Violet's Web: Vi Jones-Medusky's Blog

April 13, 2011

2011-04-15T13:00:00.000-07:00

Memorial Service on Wednesday, April 13, 2011

2011-04-05T18:07:00.000-07:00

Thank you to all of our friends for your support.

The family is united in their strong belief that Vi passed away peacefully, under the best of circumstances given the challenges of ALS. While we are all saddened and feel loneliness at times, we have a deep sense of peace, understanding that the family, friends and caregivers all came together over the last 7 years to provide the best for Vi.

Thanks to all of you from Vi (and the family).

The memorial service events have been scheduled and are as follows.

Wednesday, April 13, 2011

Memorial
Visitation with family at noon (12:00PM) with memorial service at 1:30PM at the Honolulu Japanese Seventh-Day Adventist Church in Manoa located at 2655 Manoa Road.

Parking will be limited. Therefore, if at all possible, please carpool. There is on-site parking, but you may need to park off-site.

Reception
From 4:00PM to 7:00±PM at the Outrigger Canoe Club located at 2909 Kalakaua Avenue in Waikiki. We have reserved half of the club facility. Visitors may park at the Outrigger Canoe Club. Additional public parking is available along Kalakaua Avenue. Food and beverages will be served.

Paddle Out
As is Hawaiian/surfer custom, Vi’s ashes will be scattered off-shore from the Outrigger Canoe Club. Jan, carrying Vi’s ashes, will be paddled out at 5:30PM in an outrigger canoe from the club. Others are invited to paddle out via surfboard, canoe, kayak, etc. to participate in the event. There are shower and changing facilities at the club for those wishing to participate. Also, people may park/paddle out from nearby Kaimana Beach. However, all are welcome at the Outrigger Canoe Club.

After the ocean ceremony, festivities at the Outrigger Canoe Club will continue.

All our welcome at the memorial service and the reception thereafter. Please join us in a celebration of Vi’s life.

Some people have asked about sending flowers/making a donation in Vi’s name. Vi requested that any donations be made out to ALS - Augie’s Quest. In the memo section please note “in memory of Violet Jones-Medusky” and mail to:

MDA Hawaii
1221 Kapiolani Blvd., Suite 220
Honolulu, Hawaii 96814.

Aloha,

Jan

March 29th, 2011

2011-03-31T13:50:00.000-07:00

Tuesday night, March 29^th, Vi experienced breathing difficulty and peacefully passed away. Aimee was the caregiver on duty and took all appropriate action. However, Vi’s body was too frail. Dr. Davis believes Vi experienced pneumothorax, a rupture of the lungs.

It was Vi’s wish to pass away by natural means as opposed to being taken off of the ventilator. Her spirit is now free of her body.

While all of this is very sad, Vi’s love from the heart continues to live in us all.

We are formulating memorial service plans and will advise later.

Aloha,

Jan

Vi and Peg's Adventure Trek and Run 2010!!!

2010-10-12T22:40:00.000-07:00

Vi and Peg's Adventure Trek and Run was a huge success again this year! Thank you to all those who helped put the event together, the MDA, HURT, PJ and John and everyone else who helped make it another success. Thank you also to all those who participated! It was a beautiful day at Kualoa! While it was a bit over cast most of the day, it was still hot as ever! Below are some photos from the event. We look forward to seeing you all again next year!

Vi and Peg's Adventure Trek and Run

2010-09-22T19:46:00.000-07:00

Here is the application for Vi and Peg's Adventure Trek and Run. The race is on 10/10! You can also go to HURTHawaii.blogs.com for more info. The deadline to apply for the race is October 1 and no late applications will be accepted to so hury and enter and we'll see you there!

MDA Telethon

2010-09-06T14:14:00.000-07:00

The Jerry Lewis MDA Telethon airs today, Labor Day, on KITV-4. Be sure to tune in today to watch! There will be a live interview with Jan at 2:00 this afternoon and Natalie will be answering telethon phones from 3:00 to 5:00pm so please be sure to call in and donate! Here are the numbers to call:

MDA Donation Phone Numbers
Oahu: 792-4632
Maui: 270-2632
Hawaii: 930-2632
Kauai: 240-2632

Address:
MDA Hawaii
1221 Kapiolani Blvd #220
Honolulu, HI 96814

Vi's Adventure Trek and Run

2010-08-10T01:40:00.000-07:00

It's set!!! Vi and Peg's 3rd Annual Adventure Trek and Run will be held on October 10, 2010 at Kualoa Ranch Valley! How cool is that? The trek and run will be on 10/10/10!!! We look forward to seeing everyone again this year at beautiful Kualoa Valley for another breath taking trek. More details to follow as it gets closer. We're putting the word out there, so please mark your calendars!

2010-07-10T22:34:00.001-07:00

Fourth of July SUCCESS!

2010-07-09T13:25:00.000-07:00

Vi really wanted to write the Fourth of July Update Blog herself, but her neck has been hurting so she asked me to write it. She's a much better writer then I am, but here goes anyway.....

Early in morning on the 4th, our country's birthday and Lou Gehrig's 76th year of retirement from baseball when he was diagnosed with ALS (Vi wrote this line, see how good she is).

Our Fourth of July set up crew met at Divina's house at 7:00am sharp to load up her tents, tables, grill and decorations. Meanwhile, at a much earlier hour, Glizza and company were busy picking up the Fourth of July BBQ food from Vi and Jan's house. We all met at the Kapiolani Park and began the long haul of set up for the second annual ALS Fourth of July BBQ. The tents were set up on the Diamond Head side of the park, trees were wrapped in red, white and blue streamers and the American flag flew high. It was a team effort! Thank you to our set up crew for your hardwork!

When we finally started with a welcome speech from Jan, he remembered all who could not come and those among us who flew to Heaven this year: Daria, Sylvia, Nancy, Joe, Bully, Charlie. They are having their own fireworks up there, I bet.

Lance and Nicole manned the BBQ grill, grilling up burgers and dogs. Vicky and Priscilla collected tickets and donations. Nancy was busy making shave ice. Jeannie was painting the kiddies face. Divina and Natalie called out winning raffle numbers. Pete took photos and everyone had a great time! Thank you to all of our raffle prize donors: Tropical Blends, Ocean Minded, Smith, Vertra, The Peggy Chun Gallery, Menchies Frozen Yogurt, Bikram Yoga and The Moana Surfrider. Thank you to Daniel, Cole and Tanya for collecting the prizes! Thank you to D. Otanu Produce for donating the veggies and to Loves Bakery for the buns!

Vi, Britt, Chester and Celeste were there enjoying the festivities and soaking up the sun.

The Fourth of July competitive spirit was souring high! We played water balloon toss, tug-o-war, relays and a good ol' fashion game of softball.

This Fourth of July was a huge success and could not have been possible without the tremendous help from family, friends and strangers. For fear that I might leave a name out I'm just going to say thank you to all for making this event so successful, you know who you are no matter how big or how small your contribution. Pictures are soon to follow!

ALS Baseball 5.23.10 v2.mov

2010-07-01T11:54:00.000-07:00

AWARENESS, AWARENESS, ALS AWARENESS

2010-06-30T18:04:00.000-07:00

Last year 4TH OF JULY was declared ALS AWARENESS DAY by Mayor Mufi Hanneman. No one pursued the mayor's office this year to obtain the same proclamation as last year. There are different kinds of awareness. The proclamation declared by the mayor was to make aware what is ALS as most people do not know what is ALS. The awareness written about today is about physical awareness, emotional awareness and spiritual awareness. These are three important components that every person and family member touched with the disease should be aware.

I feel every day should be ALS Awareness Day, especially for us who have ALS and their families. Remember the day when your doctor announced to you that you have ALS! You were shocked, your head was spinning, and maybe crying. This will last for awhile until this processes through you and then you can move on to education. We need to educate ourselves first about the disease process and know your body, keeping track of the progression of the disease. Everyone is different. There are many resources out there. Start with your local MDA (Hawaii MDA has a wealth of resources and knowledgeable people that would love to help you.)

Search your heart, reviewing your life and it's meaning to you, your priorities in life and are they to remain the same. Educate your family about this awful progressive disease that will steal part of your life away that you are so looking forward to spending time with your family watching them grow up! From there you and your family can educate all of your friends and the people that stare at you (For the one's starring: I use to throw the SHAKA with a big smile).

Again search your heart spiritually and know where you stand between you and your God. I know I have a wonderful loving God. Take time to talk to your pastor or counselor, sharing the issues that are heavy on your heart. Relationships will go up and down like a roller coaster along with your emotions. Seek marital counseling, again go talk to your pastor and have someone you trust come and help with a family intervention that all will understand and also bring up their own fears. Having a family intervention can bring unity and understanding to the family.

I wrote the above from my personal perspective. When I was diagnosed, I was sitting on the clinic bed and the Janster was sitting on a chair next to me. We both had a good idea what was ALS. When the doctor opened his mouth and the words flowed out ALS. I closed my eyes and prayed, "please God give me strength and please take this burden away." In an instant I felt lighter and knew Jesus was with me and will be with me to the end.

After hearing the sad news, both Jan and I cried and cried for awhile. Jan put together a nice binder of information about ALS for each of our 3 children. I met with Daniel in person on Mother's Day at Magic Island over looking our favorite surf spot Ala Moana Bowls. Tihis was one of the saddest thing I've had to do. We cried and cried together with hardly any spoken words. There was no need for words. Jan called the other two children who lived abroad telling them the sad news and sending them a copy of the binder of ALS materials.I spoke to each child to see how they were doing emotionally.(As a mom and nurse, I wanted to make sure they were understanding what this disease was about and how it would affect their/our lives.

Jan and I made a Ben Franklin Truth chart of all the things we wanted to do and what I wanted to do before the big HURRAH. The first 3 years, I continued to work on an on-call bases and traveled with the kids thru Europe on the surf tour and meeting up with Jan to spend time and travel witb him. I spent 18 months studying for my Masters in nursing with my nursing friends which we all finished in flying colors. The last 5 years we have spent many months in Bali near our son Mikala, watching our grandchild grow and surfing. (Jan's favorite place to surf). I continued to swim and surf until I no longer could. The passion of running turned into walking, then with a cane and then with a walker and finally a wheel chair pushed by my friends. (We did the Haleakala Run to the Sun Race the last 5 years as a relay). The list goes on and we've checked them off. Family is the top of my list.

We continue to see a counselor once in a while to check in to see how our relationship is going emotionally. This seems to be working well. I continue to meet with my pastor once a week. I am now on the vent having 24/7 care. I take it one day at a time keeping in check my emotional, physical and spiritual awareness.

On my last post, I received a comment from a 44 year old lady just diagnosed with ALS who touched my heart. The one who gives me solace and peace in this life is God.

God Bless,
vi

COUNT DOWN TO THE 4TH OF JULY PICNIC FOR ALS

2010-06-29T15:22:00.000-07:00

YEAP! This is the count down for the preparations for our ALS 4TH OF JULY PICNIC honoring Yankee baseball star Lou Gehrig's retirement from baseball SEVENTY-SIX YEARS ago when he was diagnosed with ALS. Our Hawaii ALS Ohana have been working very hard to make this event a success to help start a foundation for
helping our Hawaii ALS families in need for a care giver for respite time and also to make sure you have a lot of fun.

This is Hawaii ALS Support Group biggest fund raiser to help our ALS families give quality care to their loved one as well as to give the family time to re-energize themselves. ALS is a disease that can occupy the care giver's time causing burnout if there is no relief for that care give. (I can give you an example, since I am an experienced ALSer: When I go to bed at night, my body molds to the bed making every bump and crease irritable to my body. The weight of my body becomes heavier and heavier and I soon feel my circulating blood slow down in my extremities until their numb. I call on my care giver many times at night to help me get comfortable, to do range of motion on my extremity's and then to take care of all my other needs! I know each morning when the sun is rising to a new day, that care giver is poopped!) Now just imagine if this care giver was a family member and had to go to work! Sooner than later this family would be in chaos.

Many families care for their loved one and do not have the luxury to hire an outside care giver to give the family a time out. Care givers cost anywhere from $10-$25 per hour depending on their schooling, certificate for CNA and experience. Don't forget ALSers need 24/7 care. As you can see, the cost adds up.

Thank you! Hawaii ALS Support Group for making this a success. This OHANA comprises of families with current loved one with ALS, family members who have lost a loved one to ALS and wonderful friends whose hearts have been touched. More than special MAHALO to DIVINA ROBILLARD, RN, MPH. Divina is the founder of Hawaii ALS Group under the MDA. Divina and Natalie have been the ACTION directors for our picnic and I have been the bed potato making sure everything is covered.

Thank you again to all my friends, family and those out there who are touched for supporting Hawaii ALS Support Group.

God bless you all!

Good nite Violet and Bella. Good nite Spike.

Nana loves you!

ALOHA
vi

"All things are possible through my God who strengthens me daily."

2010-06-25T21:00:00.001-07:00

This 4Th of July, the ALS SUPPORT GROUP will again have a fund raiser honoring Lou Gehrig's seventy-one years of retirement after being diagnosed with ALS. This year your donated money will stay at home in Hawaii to help our ALS families throughout Hawaii. When ALS strikes a family member, this also affects the whole family and circle of friends. As the ALS progresses, more care is needed which becomes a heavy burden to the family especially if there are no other help and there are other involvements outside the home such as work, school and raising children. Family members become burnt out which signs are being resentful, depression and not doing a good job of care giving. These families need help with another care giver stepping in to give the family member respite time. However, this scenario does not take place very often because of the cost to hire another care giver. One of the goals of the ALS SUPPORT GROUP is to help these families by paying for a needed care giver in time of need.

Cost of tickets are $5 for delicious picnic food, a raffle ticket ,fun ole fashion games and baseball at Kapiolani Park staring at 11:00am-4:00pm.
Call Vi's cell (808) 256-9607 for tickets. See Natalie's poster above. We will also graciously accept your donations greater than $5.
Make check out to:
DIVINA ROBILLARD
HAWAII ALS SUPPORT GROUP
244 AKIOHALA ST
KAILUA, HI 96734

Fourth of July BBQ and Fun for ALS Fundraiser

2010-06-16T23:41:00.000-07:00

Last year we celebrated 4Th of July honoring one of the baseballs' greatest player retirement, Lou Gehrig of the Yankees. Lou Gehrig retired from baseball seventy-one years ago when he was diagnosed with ALS which was not quite as known as today. Since Lou Gehrig's retirement seventy-one years ago a cure for ALS has not yet been found. Last year the ALS Support Group with leader Divina leading the way were able to raise approximately $3000 for TDI Research the largest ALS research center in the United States. Our 4Th of July picnic, games and baseball was a success because everyone gave a hand in helping with the tents, helped with the BBQ, helped with the clean up, participated in the fun old fashion games and played baseball.

This 4Th of July, the ALS SUPPORT GROUP will again have a fund raiser honoring Lou Gehrig's seventy-one years of retirement after being diagnosed with ALS. This year your donated money will stay at home in Hawaii to help our ALS families throughout Hawaii. When ALS strikes a family member, this also affects the whole family and circle of friends. As the ALS progresses, more care is needed which becomes a heavy burden to the family especially if there are no other help and there are other involvements outside the home such as work, school and raising children. Family members become burnt out which signs are being resentful, depression and not doing a good job of care giving. These families need help with someone else stepping in to give the family member respite time. However, this scenario does not take place very often because of the cost to hire another care giver. One of the goals of the ALS SUPPORT GROUP is to help these families by paying for a needed care giver in time of need.

Cost of tickets are $5 for delicious picnic food, a raffle ticket ,fun ole fashion games and baseball at Kapiolani Park staring at 11:00am-4:00pm.
Call Vi's cell (808) 256-9607 for tickets. See Natalie's poster.

I apologize for letting you know a little late. About a week ago I had my first bout of
P. .pneumonia that set me back along with my slow pace typing one letter at a time with my head mouse.

Thank you and God bless!

vi

SHARE THE CARE IS ALIVE AND WELL

2010-06-13T10:58:00.000-07:00

We have been giving out accolades to all of our care givers and everyone else , however we have not forgotten about
our Share the Care, a group of friends and volunteers who generously give us their time to help Jan and I have a life of substance. Share the Care Friends are broken into groups of things that they are interested in helping such as doing the flowers,massage, grocery shopping, cooking once a week, getting the laundry and even as far as helping interview and pick my present care givers. We also have Share the Care Friends and Family that come from the the outer island and mainland spending the week-end to share their love and give the Janster some respite time for himself. We have been blessed to have all these wonderful people in our lives. I pray for every person and family that comes into my room.

First of all I have to tell you how useless I feel to myself and the world. However, I thank the Lord for the use of my neck and facial muscles that I can still smile and mouth the words I want to speak. And how wonderful it is to have Share the Care
Friends come and do the things I use to love to do like cooking and arranging my flowers. We have 5 friends that love to cook and who all take turns one week a month bringing their delicious homemade meals for Jan and caregivers. The food they bring is a feast not only to the palette but for the eyes as well. There are a few gourmet chefs within our Share the Care Friends that are very conscious about their health that now I don't have to worry about what Jan is eating. Thank you to Cellia, Fran, Marian, Punkin and Angie : ) you make me happy when Jan's tummy is filled with your home cooking.

Kathy Q and PJ has been doing an excellent job arranging the beautiful flowers. My family from Hilo have been sending me a steady supply of Hilo's Anthuriums of various colors and sizes and my favorite Dendrobium orchids that lasts forever! Thank you! Most of my friends know how much I love flowers so my room is filled with flowers.

Thanks to Peggy for taking care of our cats, Mama and Baby cat, doing their monthly grooming. Thanks for Allen T, who comes periodically to help our care givers . It's always nice to spend time with friends.

At least once a week, I get a massage from one of our Share the care massage therapist; Andrea, Christa and Sandra. Massage and range of motion are important to keep my circulation going and keep my joints mobile. Any time your visiting, don't be afraid to grab an arm, hand or leg to massage or do some range of motion. One can never do enough of both to help someone with ALS.

There are many others who come to the house to do things around the house or errands that make life easier for us. Thank you
to those others! I want you to know how happy it makes to see you and how much I appreciate the time you take out of your life for Jan and me.

We can't forget those behind the scene that makes our Share the Care work out so smoothly. Janice has quietly and graciously coordinated our Share the Care Friends with the help of Natalie. Thank you Janice and Natalie for directing our Share the Care Friends!

God Bless all of you!

Good nite Bella, baby Violet, and Spike! Nana loves you!

Aloha,
vi

Vi's First Outdoor Shower!

2010-05-29T11:16:00.001-07:00

Just wanted to post this beautiful photo from Vi's first outdoor shower since she has been home! How beautiful and refreshing does it look?!?

HOME SWEET HOME

2010-05-24T22:47:00.000-07:00

It's been a little more than two months that I have been home adjusting to my new way of life with a vent to breathe for me, a G-tube that takes in all my nourishment (all of one flavor every day) and eight caregivers that divide the hours of the month so that I can have someone with me 24/7.

Can you imagine having someone with you 24/7 and doing everything for you because you are not able to move. Your body's muscles have deterioated and once your body is put down to bed it becomes heavy and then numb as the circulation of your body slows down and then there is potential for skin break down on any bony prominence like your sit bones, tail bone, elbow, back bone or anything that sticks out. This is where the care giver come in to massage, move and do some range of motion to all extremities. This happens approximately every 2 hours. Another importance of comfort are the positioning of my 3-4 pillows can determine how well I sleep. There have been a few nights where I've had a new care giver who did not know about pillow positioning and could not read lips. We were really in trouble then!

I am very thankful for my team of caregivers (Glizza, Andrea, Keith, Keisha, Renee, Sierra, and Michelle. Backups are Natalie, Daniel). Also to Corey of Care Alternatives and staff who have instructed our care givers in the many nursing aspects for care giving and the vent.

I have to thank Jan for his hard work and persistence in obtaining the best care and fixing everything at home for me! Jan totally ROCKS! I LOVE YOU HONEY!

All in all, it's been a tough road, however I am blessed to be here at home with my family and friends.

Good nite Bella, good nite Violet and good nite Spike! Nana loves you all!
Aloha and God Bless
vi

2010-05-21T21:41:00.000-07:00

Vi’s adjustment to her new life with the vent at home is starting to settle in, as is the case with all of us taking care of her.

She has relatively few doctors appointments. The doctors either come to the house or visit her via the camera/internet system we have.

We now have a good group of eight caregivers that provide 24 hour a day comfort for Vi. The caregiving is very intense in that her mouth is suctioned about every 5± minutes. Her lungs are suctioned about once an hour. She also requires constant moving/shifting by the caregiver as she can’t move herself. Toileting, bathing, etc. is all handled in the bed. She is basically in her bed 24 hours a day, 7 days a week except for a few occasions.

Getting out of the bed is somewhat complicated and involves 2 or 3 people. We use a hoyer lift to raise her. It’s not possible to lift her up by hand due to her connection to the feeding tube and ventilator. As other aspects of her care are becoming second nature, we intend to work on getting her out of the bed more often.

We did have a minor emergency situation last week when the ventilator stopped working. The caregiver, Kisha, promptly recognized the situation, got me to help her and began to bag Vi (use the ambu bag to manually provide air to her lungs). After a few minutes, Kisha found the air leak problem. We fixed it and told the emergency people that were on their way that everything was alright.

Another event involved taking Vi to the emergency room at Queen’s Hospital to have her trach switched. The old one was malfunctioning. Getting her ready, out the door and to the hospital required 5 of us as we had to go with vent, suction machine, backup battery, power chair, ambu bag and other related equipment. All went well. Vi now has a new trach.

Vi is using her computer and connection to the internet more and more. However, she still is not using the Dynavox machine which can speak for her. Communication is pretty much handled by watching her lips as she forms words or letters. Some of us are better/worse than others at understanding what she means.

In summary, Vi/we have made a lot of progress since she left the hospital two months ago. Her spirits remain good, mitigated somewhat by the very difficult/uncomfortable situation.

So much for now.

Same, Same, But Different

2010-04-15T19:21:00.000-07:00

It's been months since I have blogged! A lot have happened during that time up to the present time. I feel like the same person, but then again different. It's like in Bali where there are so many copy cats. Really, they can copy just about anything. So, when in Bali looking for that special something and something similar pops up. We say "Same, same, but different." And that is how I feel.

First of all I have to thank my God, my family, friends and others for their support, prayers, flowers , cards and love while in the hospital. I am now home settling down in my new bed and new care givers. (Believe it or not I am being bagged with the AMBU bag to practice in case of an emergency and the vent fails to work as I write this.) On the day of my birthday party I was rushed to the emergency room for respiratory distress by Jan, Malia, Spike, Natalie and Renee. . Jan noted that I was acting very lethargic and used a pulse oxyimeter to measure the oxygen in my blood which happened to be in the 80's which is not a good sign and away we went to Queens Medical Center. While checking into the emergency room, I must have lost it because I don't remember anything happening. When I awoke, I was in the respiratory CCU feeling groggy, in pain and something was sticking out of my mouth.
After a few days a traecheostomy was done and a vent hooked up. The three week stay at the hospital was not the best. It's so much better to be in your own surroundings. I now lie in my bed attached to my vent for the air I breath and I sometimes ask myself if this was the right choice! @#!

I thank the Lord for all His Blessing and for giving me another opportunity to life!

I am the same person but different!

Good nite Bella, good nite Violet and good nite Spike! Nana loves you all!
Aloha and God Bless
vi

ALL THINGS ARE POSSIBLE THROUGH CHRIST WHO STRENGTHENS ME

Vi Update

2010-03-15T20:44:00.000-07:00

I wanted to write a quick update on Vi. She is still recovering at Queen's Hospital while her care team is put in place and trained on how to operate the ventilator. We're busy getting the house organized and set up which includes ordering all of the equipment we'll need. Vi is scheduled to be discharged on Monday the 22nd so this is a very busy week. Please email me if you would like to know her room number to visit. She loves the company!

Vi Update

2010-03-03T19:13:00.000-08:00

Last Sunday, Malia and Jan took Vi to the emergency room when they observed that she had breathing difficulties. She was intabated (a tube inserted into her throat so she could breathe) and placed in the ICU (Intensive Care Unit). This morning (Wednesday), she had the tracheostomy operation. The surgeon performing the operation was hand picked and had completed the New Zealand Ironman Triathlon with Vi over 6 years ago! The anesthesiologist was also a co-athlete with Vi who had volunteered for the operation. It all went well.

All of this was in accordance with Vi’s wishes. She now can fully recline to sleep. Her body is getting all the oxygen she needs without any concern for CO2 buildup.

She will likely be at Queen’s Hospital for a number of weeks while preparations are made for her home care.

She is surrounded by her family. We will keep you posted on her progress.

Never a dull moment!

2009-09-29T18:54:00.000-07:00

Its been about two weeks since our race. There are a few people I would like to recognize who completed the race. First there is Pooky (Trystan Wong) a 7th grader at Kamehameha school who did the race as a class project. I thought how compassionate he is to learn all about ALS and motor neurons for his class project and then, there was Chad who has a muscular dystrophy disease and completed the race happily with his mother. Both of them filled my heart with joy so thank you thank you thank you!!!

Since we last blogged we have had tons of visitors. Besides our regular friends that comes to visit, I have had my college classmate Lei come to visit me from California. It was fun catching up on 25 years of absence. Crazy but Fun! Then their was Rosa who happens to be at a conference in Kona and found out about my situation. She promptly found my number, called me and flew over for the day to spend some girl time after not seeing each other for 15 years. It seems like a day has not passed us by as we picked up our friendship from way back then.

Wow Lau lau!

Share the care, Violets Web, is finally coming to fruition. Last week we had Sandra come over to give me a massage and ouh was it nice! We are expecting another massage therapist to come this week. We also had Fran prepare some food for us and the caregivers. Fran surprised us with a delicious risotto and salmon dish. Thank you to Sandra and Fran who is starting to spin the web. Thank you also to Bev from the Big Island who came over with her daughter Carlee to spend the weekend with us. If any of you have any questions about share the care please call Natalie at 258-9388.

Three weeks has past since getting the G-Tube. It has been a slow getting used to the tube feedings. I take in approximately 900 calories of tube feeding and then eat between 500-600 calories by mouth. I did not realize that I would have to eat all day to get in enough nourishment. We are still adjusting the amount and time of each tube feeding and sometimes I get a little nauseous or I feel sick to my tummy. Hopefully we will be able to resolve this problem soon. My gastro doctor said the peg looks beautiful and to return in one year. Whew!!!! We will be getting back in the water in a couple of weeks so be ready water people!

This Thursday we will not be having swim day but, we will have tea and reading by Bill and Punkin at 10:30 am here at my house. Come up and join us to all my swim friends and anyone else.

On the last note I want to share that Daniel made the cover of the new Surfing Magazine that is coming out soon.

You would never guess who helped me with today's blog. GLIZZA! She is covering for Malia, Spike and Daniel today and will leave back to Bali this week.

Good Night Bella! Goodnight Ruby! Goodnight Spike! I LOVE YOU!

God Bless You All!

Aloha,

A Big Mahalo!

2009-09-23T21:30:00.000-07:00

Thank you Natalie for posting the pictures of the run! Thank you HURT and MDA for making this run possible. Thank you all for supporting this event and bringing your high energy that made you all glow happiness. Thank you to all who donated food and drinks for all. We appreciated every drink and morsel.

On the day of the run, we were blessed with the most beautiful day in Kaaawa Valley! Approximately 220 runners, walkers, moms and tots, dads, families and costumed creatures lined the start and off they went on the 3.7 mile trek into the beautiful valley guarded by the majestic green Koolau mountains on either side. The view is breath taking! The 3.7 mile trek route is rather challenging as the HURT motto is "You wouldn't want it to be easy". The course marshals dressed in costumes such as Spam, girl in pj's, Ling Hing Mui seeds and the bat guided and cheered the runners on their way. The cows mooed and ran scattered as runners ran through their turf. Now how many runs do you know of that goes through a cow pasture?

It's late and I will continue tomorrow. In the mean time check out these pictures and You Tube.

http://www.youtube.com/watch?v=-lLVeWu6tzY

Good night Bella and Ruby. Good night Spike.

God bless and aloha

Photos from Vi's Adventure Trek and Run!

2009-09-20T22:06:00.000-07:00

Thank you to everyone for making today such a success!

Vi's First Blog Back

2009-09-15T20:33:00.000-07:00

It's been twelve days since the insertion of the PEG Tube. Thanks for all your calls, concerns, love and support. I sailed through the simple procedure which could have turned bad, on the wings of my angel. Thanks to my great Doctor, everything went with no problem.

I apologize for not blogging, however, the last week I've been feeling a little depressed. I know that I am feeling this way because I haven't felt the ZEST that I usually feel and now I have this tube protruding out of my stomach that needs to be hooked up three times a day. Wouldn't you be depressed too? Just imagine I have always loved cooking, eating, shopping for my own fruits and vegetables which I am not able to do anymore. I am trying to be positive and look on the brighter side of how to enjoy eating, cooking, and smelling and caressing the fruits and vegetables.

The highlight for our family this week was the engagement of Daniel and Natalie! Sighhhhh....FINALLY! We love you both, Daniel and Natalie, and wish you both continued love and support.

We are all looking forward to our Adventure Trek and Run on Sunday which will have approximately 300 participants. Be sure to dress in a funny costume! We are looking forward to seeing you.

Goodnight Spike! Goodnight Bella! Goodnight Ruby Rose! Nana loves you!

Aloha, Vi

Photos from The Last Swim Day Before Vi's Operation

2009-09-07T01:31:00.001-07:00

Thank you everyone for making last Wednesday's, late afternoon swim so wonderful! We had such a great time and I know Vi did too! She's doing well and we promise she'll post a blog soon!
- Natalie

Update on Vi's G-Tube operation!

2009-09-03T23:49:00.000-07:00

Hello everyone! So, I'm sure you all must be going crazy wondering how the operation went today so I just wanted to write a quick message and let everyone know that the operation went really well, no problems. It got off to a late start, about an hour later than expected because the prep time took a bit long, but the total operation didn't seem longer than 15 to 20 minutes. Vi was in recovery for a few hours as they searched for a hospital room for her to stay the night. Jan is there now with her for the night and she will be checking out and back home at 11:00am tomorrow. She was in a bit of pain after but overall was just really sleepy. Thank you all for your blessings and positive thoughts. I know Vi will want to write another blog and tell you all about the experience when she is back home. But, for now, you can all rest easy knowing it went well.

Natalie

The Day Before The G-Tube

2009-09-03T00:45:00.000-07:00

Today, Wednesday, is hopefully not the last day of swimming even though tomorrow I go in to have the G-tube put in. We had swim day this afternoon which ended with a picnic of scrumpaliscious food. Everything from KFC to Indian food and imported olives from Italy and, of course, Hawaiian food! Thank you Jeannie, Heidi, Aunty Karen, Malia and Spike, Tina, Elaine, Rene, Roy, Sandra and sister, Lorenn, Jan, Daniel and Natalie. The day was just beautiful with an occasional gusting trade passing through. At first, the water looked cold but it turned out it was warm. We swam and chatted as usual. It was nice to have Jan there to experience swim day. Hopefully, I will be able to continue swimming and return back to the water in approximately 6 weeks. Until then, it would be nice to keep meeting at the beach and hang out. What do you gals think? After I get the G-tube in, I will still be able to eat, however, it is called recreational eating as I will be getting most of my caloric intake through the G-tube. Oh well! I am ready for the transition and going with the flow. So this is a little video for you my friends and I truly appreciate all of your love and support. My family has also been over the moon for me. There is nothing else I can say that can truly paint a picture of their love. I will be having the G-tube put in at 11:00 at Queens and will stay the night for observation. Natalie, Jan and Daniel will be with me and you may call Natalie at 258-9388 for updates.

Goodnight Spike! Goodnight Bella! Goodnight Ruby Rose! Nana loves you!

Aloha and God bless,

Vi

Wednesday through Saturday

2009-08-29T22:53:00.000-07:00

What a day this has been! Poor Mary, our wonderful new care giver, was greeted today not with anticipation but with constipation. I'm pretty embarrassed to even mention the P__P word but in the world of ALS constipation is real. This was my first episode of constipation...... and it was painful. We did everything to remedy the situation until finally the storm was calmed and I found relief. WHEW! When I was healthy running, biking, swimming and surfing was an every day occurrence that constipation was not in the vocabulary. Now, foods that I eat will have to be high in fiber and soft enough to swallow. Not to mention drinking a lot of liquids. Thank you Mary, Daniel, Malia and Spike for being there and helping me today. Thank you also to Tina who, with great compassion, brought me some yogurt and a movie. Enough about that, now on to other things.

Last week my family from Hilo and Maui visited and stayed with me while Jan went to Bali. I had such a wonderful time with them all. My brother Al and sister in law Nancy from Maui arrived last Thursday evening and left on Sunday evening. We did a lot during the weekend including the tour of Shangrilla. The home of Doris Duke who created her home on the shores of Diamond Head around the Moslem culture. Her home was amazingly beautiful and she was not Moslem. If you get a chance, it's worth the visit. Jan returned from Bali on Monday and was back to work the next day. Everything is almost back to normal.

Okay it is now Saturday already and I did not get to complete my blog. Good thing Natalie and Daniel are here visiting me today and Natalie is taking over to help me complete this blog to get it out. Let's go back a couple of days.....

Thursday was the most beautiful swim day. The air was crystal clear after the down pour and the blue sky was bluer than ever. Heidi, Sandra, Rene, Karen and I stayed in the ocean for the longest time. Aunt Karen dared to put on her bathing suit and join us in the beautiful ocean. This was her first time ever to enjoy the ocean with us as she is usually sitting on the beach watching us. Good going Aunt Karen! Congratulations to Heidi for running a great race for Council Woman for her district. There were fourteen competitors and Heidi came out a whopping fourth place finisher which is great for an unknown. We are all proud of you Heidi. And, by the way, Heidi is our swim day photographer.

On Friday afternoon, I went to see my pulmonologist for my monthly visit and the results for my vital capacity were the same or better than the last one. See, I am hanging in there. I am also trying to use my AVAP as much as I can. Daniel is making sure that I follow through.

Today, Saturday, is a beautiful day. Lorie and Allen came up ad spent a couple of hours with me. Both Lorie and Allen are apart of our Run to the Sun relay team. Lorie is fast!

There is probably a lot more that I have forgotten to write about, however, I will try to write more next week. Here is an update on our run. As of last week, we have 270 runners and we are still open for more. So if you haven't sent in your application, there is still time. We would love to have you! Don't forget the costume!

On September 7th, Natalie will be answering the phone for the MDA Jerry Lewis Telethon from 3:00pm to 5:00pm. Be sure to call her and donate! Natalie will have a picture of me in the front of her phone. Call Natalie!

Hope you all are having a great weekend. Be sure to get out and enjoy our beautiful Hawaiian sunshine.

Goodnight Bella! Goodnight Spike! Goodnight Ruby Rose! Nana loves you!

Aloha, Vi

Pictures from Thurday's Swim Day!

2009-08-22T23:09:00.000-07:00

Picnic photo

2009-08-20T18:54:00.000-07:00

A couple of Blogs ago we said we were hoping to get a photo of Jan at the MDA picnic participating in the relay race. Well, here it is! We told you it was funny!

Blog 35!!!

2009-08-19T23:55:00.000-07:00

Today, Lisa and I spent a lazy day at home doing nothing. It is a rare event that we are home without anything to do. It's been 12 straight days that we have been out and about through out the day. So today was a delight not to do anything. This is going to be a very short blog to remind you that tomorrow, Thursday, is swim day. My swim days are limited so be sure to come and enjoy the ocean with me. See you there!

Don't forget, tomorrow is the deadline for the run. Here again is a run application.

Lita, Eric, Marcus and Grandpa Sagon have been enjoying their stay. I have enjoyed their company and they have been so helpful to have around. They wl be leaving us tomorrow to return back to Hilo. We will miss them! My brother Al and Nancy arrive tomorrow to spend the weekend with me.

So, we will blog again tomorrow after we swim.

Goognight Spike! Goodnight Bella! Goodnight Ruby Rose! Nana loves you!

Goodnight Jan! I am glad you sounded very rested on the phone and I am glad you and Henrik are getting the work done. I love you!

Aloha, Vi

Blog 34!

2009-08-18T19:29:00.000-07:00

This is Tuesday. Natalie is on the other end of the telephone line trying to decipher everything I am mumbling about (mumble, mumble, mumble). I'm mumbling and slurring my words together with a nasal pwang caused by ALS. Again, if you can't understand me don't be ashamed to ask me to repeat it and, don't tell me you are getting deaf and can't hear me! I won't mind at all to repeat myself.

Lisa has made me a template for communicating when I am not able to talk using a frame with six sections of letters on both side. One side of the frame faces me and the other faces whoever I am communicating with. The middle of the frame is empty where the person who is communicating with me peers through. That way, they are able to see what section of the frame I am gazing at. To communicate, I then look at the section of the letters that I need on the first gaze (like A, B, C, D or E, F, G, H or I, J, K, L). The second gaze tells you which letter (1, 2, 3, or 4). At first it may seem difficult but once you catch on, we will have a fun time talking. So sharpen up on your spelling.

Renee, Michelle's twin, is here with me today as school is starting and Michelle had school orientation today. Its been a pretty good day and Renee is a fast learner. This is the first day she stayed with me all by herself. School is starting not only for Michelle but for Natalie and Renee. However, they will continue to help me while attending school. I feel very thankful and blessed to have wonderful, energetic caregivers. So thank you, thank you, thank you.

Today, Renee, Daniel, Marcus and I attended Aqua Therapy. As usual it was awesome to get in the water in the morning. However, aqua therapy was hard, hard, hard! Today, I wasn't able to walk backwards. That was the hardest thing to do and Matt, my physical therapist, said that my gluteus maxi mus was very weak and those are the muscles that pushes you up from a sitting position to stand. I have noticed in the last 6 months, a loss of "junk in my trunk" or loss of muscle on my bum. Now, I have to concentrate more on doing exercises for my gluteus maximus to strengthen those muscles.

Ok, it has been set for September 3rd to insert a PEG (Percutaneous Endoscopic Gastrostomy) to help to get enough calories and to keep me safe from choking as my swallowing has weakened considerably. Everyday something slips away from me from this awful disease. I can still eat and drink, but very carefully. I am not excited about having the PEG inserted. Tt only takes approximately 10 minutes to complete this procedure. However, it can become critical as my vital capacity is at 20-something percent and I will have to be put under anesthesia which will depress my breathing even more. So, pray that it all goes well.

I especially want to say Hi to my Hilo friends and many who I haven't seen for 40 years. Harriet, I do remember Lois. And Hi to Steven who sent his business card with a nice note with Jessica. And to all my other friends who have written on my comments, next time, add your email address and I will send you an email.

Jan is doing well in Bali. He and Henrik have gotten everything under control. Jan and Henrik will be having dinner with Glizza and Antoine this evening. I wish I could be there too and will send my love to all of you. Hi especially to Aming and Nugrata and the Villa Teresa staff.

Goodnight Bella! Goodnight Spike! Goodnight Ruby! Nana loves you!

Goodnight Jan! Be safe and happy.

Thanks again to all my friends and don't forget to sign up for the great fun run.

Aloha, Vi

Blog 33!!!!!

2009-08-16T22:37:00.000-07:00

It's another weekend. Sighhhh....How life can pass by when you're not conscious of it. However, I'm not trying to do that. I've had a load of company this week and through out the weekend while the Janster is on a business trip to Bali. Half of my family from Hilo picked this weekend to come and hang out with me. I can't believe they are all here staying at my house. They are all learning about ALS firsthand. Jessica has just been promoted to the "A Squad" of caregivers. Since their arrival yesterday, the pots in the kitchen have been clanking with delicious home cooked food and Lita has even busted out the vacuum cleaner and don't forget about Grandpa Sagon who is 103 this October who has been wandering about the house with everyone trying to keep track of him. We have to keep a close eye on Grandpa as he chews tobacco and forgets that he is in doors and spits on my floor! True story. However Grandpa Sagon is the specimen of good health with no medical problems. He walks by himself with no aid and has a passion for reading anything that is placed in front of him. We love Grandpa Sagon "Okie Dokie!" (his favorite saying). My brother Junior and his daughters Jessica and Jennifer will be returning to Hilo on Monday and Eric, Lita and Grandpa will stay with me through Thursday when my brother Al and Nancy from Maui will take over for next weekend until the Janster returns (Jan, I am well taken care of. So, you don't have to worry about me).

Yesterday, I had my Aunty Tala, Wanda and Dirk, Leana, Uncle Leggie and Cindy and Uncle Bo come up and spend some time with me. It was fun talking with them and catching up all that was happening in their lives. Thanks again and come again!

This is the last week to sign up for Vi's Adventure Trek and Run. So be sure to sign up soon by August 20th. If you know of anyone who would like to donate beverages, we're looking for someone to donate for our event.

Goodnight Bella! Goodnight Spike! Goodnight Ruby! Nana loves you!

Goodnight Jan, I love you! Have a nice dinner with Emma, Mikala and Bella!

Aloha, Vi

Blog No. 32

2009-08-13T16:48:00.000-07:00

Hallelujah! Natalie and Daniel are back. It seemed like forever that they have been gone. Welcome back Daniel and Natalie! So now, we can get back to business.

A few things have happened since our last blog. Last Thursday we had a great swim day at Kaimana. We must have swam for over an hour and as usual, we chatted up a storm. I think we will only have a couple of swim days before I get a g-tube put in/ This will likely happen in a couple of weeks. Thereafter, I may not be able to go swimming for a few weeks. The doctor had already scheduled this procedure for yesterday, however, I was able to put it off for 2 weeks and I am happy about having it put off. So, we will let you know more about it. As for me, my goal is to eat as many things as I can.

On Saturday, Jan and I attended the MDA summer picnic at Ala Moana Park. There were many new faces who we had not met before. It was fun to see all participate in the games and having fun. Jan even helped out in one of the relays which was hilariously funny as his task in the relay was to pick out 5 gummy worms hidden in a plate of flour, only using his face. It was so out of character for Jan. Hopefully, the MDA will send my a picture that I can post to show you how funny it was.

On Sunday, Jan and I attended brunch at the Outrigger with Farber's flyers running group honoring their coaches. Jan was a coach once, a long, long time ago (and that's how we met). It was nice to see all the women I used to run with and visit with them. It was also nice to visit with the coaches and honor them for their great work. Farber's Flyers has been in Hawaii for the last 30 years. The only person left was Donnie Farber himself.

After the scrumptious brunch, Peggy and Stote hung out with me so Jan could get some time to himself. Peggy and I picked a movie out of the sky and ended up hating it. So anyway, we ended up hating it and found solace in going to Whole Foods which made us happy. While at Kahala Mall, we met several of out tri-friends and old classmates. Everywhere we turned, it seemed like we knew someone. Thank you Peggy and Stote! I had a wonderful day with you guys!

Don't forget that the deadline to register for Vi's Adventure Trek and Run is on August 20th. So please don't forget to sign up! All proceeds will be going to our ALS friends here in Hawaii. If you have any questions, please call the MDA office at 548-0588. Thank you again!

If you are in Kailua on Saturday, the ALS support group will be having a garage sale at Divina's house at 244 Akiohala Street in Kailua from 8:00am to 2:00pm. So come by and buy something!

I guess this is it for today's blog. I am very glad to see Daniel and Natalie home. We have all missed Glizza, however, I think she is doing well in Bali.

Goodnight Spike! Goodnight Bell! Nana loves you!

Goodnight Ruby! Nana loves you!

Aloha everyone, Vi

Blog 31: Tuesday

2009-08-04T23:28:00.000-07:00

I'm back to apologize the mess up in the last blog. Natalie is the expert blogger. As for me, I am in need of blogging 101. In the last entry, did you notice that there was no ending? That is because I didn't know how to edit the blog. And just a reminder that Natalie is still on vacation til Saturday and I am blogging using my head mouse one key stroke at a time. Yes, it is time consuming.

Just want to remind you about the second annual Vi's Adventure Trek and Run on Sunday, September 20th at Kualoa Ranch. The run is the most beautiful 4 mile loop you will experience. You can run or take your time to enjoy being outdoors and enjoy your motor neurons. Those are the guys that are dying in my body causing my muscles from walking, running and most movement. If you need to run more than 4 miles, then run a few more loops! All the net proceeds will be donated to the MDA ALS division to provide support to our local families living with this horrible disease. You can find the run application on the HURT website below:

http://hurthawaii.blogs.com/

Thank you for participating in the run which serves a great purpose and will also make me happy.

This is short tonight. Will blog more tomorrow!

Good nite Bella. Good nite Spike. Nana loves you!

Good nite Glizz and good nite Natalie and Daniel.

God bless you all.

Aloha,

Blog 30: Sunday, Sunday, Sunday!

2009-08-02T22:23:00.000-07:00

Hi again! Here we are already Friday afternoon. Jan came home from work late this morning not feeling well which is rare for him. (I had good intentions to blog last week Friday.)

Let’s try to blog again. It’s been at least a week or more since the last entry. Natalie, my main blog helper, and Daniel are on vacation in California and will be returning next Friday. They both deserved this vacation and I hope they are having fun!

Getting back to last Friday, Jan came down with the stomach flu and was bed bound for three days. Just so happened that Malia was helping me that day and ended up taking care of Spike, Jan and me. What a handful we all were! She scurried around the house all day making sure we were all watered, fed and comfortable. We then packed my things for the weekend to go to the North Shore with my sister in law, Nancy who was coming from Maui for the weekend. I had to leave the house to be away from Jan as to not to get the flu which if caught would have been disastrous for me. Don’t worry, Malia made sure that Jan had homemade chicken rice soup, fruit, lots of liquids and all the flu and cold meds out. Jan is now better and back to his usual. Thank you Malia!

Nancy and I spent a quiet weekend at our Mokuleia beach condo watching movies, eating and enjoying watching the ocean and the colorful parachutes as they floated back down to earth at Dillingham Air Field. Malia and Spike came over a few times to swim and hang out. We had a nice girl weekend. Thank you Nancy for coming over to care for me when Jan was down and out!

We’ve had two swim days. As usual it was beautiful and fun. However this past Thursday, we forgot to bring the water belt. We (Kathy, Peggy, Karen, Malia, Spike and Michelle) sat at the beach talking and catching up on each other’s lives while enjoining the ocean, warmth of the sun and happy beach goers.

Congratulations to Punkin, Bill and Kathy Q for completing #3 of the North Shore swim. Congratulations to Peggy and Stote on placing in their age group for the Tinman triathlon and a big one to Roy for completing his first triathlon with little training. I think he is hooked on triathlons!

The last two weeks have been the initiation of our two new caregivers Lisa and Michelle who are the replacement for Glizza. They are both caregivers that give from the heart. I feel totally blessed to have them in my life. We are at the stage of getting to know each other and learning my daily needs. As time goes on things will get better and better. One day a week, Malia and Spike will be here for me. However it would be nice if we had someone to carry and hold Spike.

With summer, comes many friends and visitors to Hawaii. In the last two weeks, we have visited with a few friends. We were reacquainted with Dean and Elaine now living in Oakland after not seeing them for nine years. They now have two children.

We had dinner with Andrew who once worked at Jan’s office. We also met his girlfried Amanda as well. Both Andrew and Amanda live in New York. So nice seeing them and catching up with these young people.

We had an enjoyable dinner with Buzz whom he and wife Nell are dear friends of ours. Nell is on the mainland.

On Saturday morning, my friends from my old school dazes in Hilo like elementary to the 9^th grade stopped over for a visit before returning to Hilo. Randy and Bobbie from Hilo, Harriet who now lives on Oahu and I had a fun morning going over our classmates. This is the first time meeting Harriet since the 9^th grade and that was in the late 60’s! Wow! I don’t fell that old. Harriet is the same today as she was back then….funny. She can really make you laugh! As for Randy, we were reacquainted a few months ago in Hilo with classmates Brian and Les. Randy is also funny. I can’t believe how many of my classmates I have connected since the diagnosis. Thank you Randy, Bobbie and Harriet for taking the time to visit. I totally loved every minute with you!

Blog 29!

2009-07-20T20:21:00.000-07:00

WOW! It's been a long time since we last blogged. A lot has happened in the past few days. Today is Monday and here we are sitting in the living room with Lisa, who is one of the caregivers replacing Glizza, Malia and Spike, and Joyce, who is typing this blog as I speak. As we sit here, Glizza is on a plane flying to Bali. Hope you're having a great flight Glizza and just to let you know we're thinking of you. I know you're reading this blog because you're missing us. The best news is I saw my pulmonologist on Friday and my breathing vital capacity was up to where it was in April. It must have been the use of the AVAP or it could have been that the nurse pinched my mouth shut while doing the pulmonary test.

Last Thursday there was a jellyfish warning. Therefore we had no swim day but met at the beach and walked around the park and ended up at Starbucks. There we (Jeannie, Glizza, Karen, Lorren, Kathy Q, Malia, and Spike) drank coffee, enjoyed the morning, and chatted like we do in the water. This Thursday there will be no jellyfish so we are definitely meeting for swim day. We had a busy weekend. Besides being glued to the TV watching Tour de France we had a string of visitors. I had another counseling session which was helpful and enlightening. Glizza, Roy, and Tyler came up and hung out for awhile. Then my sister-in-law Irene from the Big Island came and visited us for awhile. She even massaged my feet and hands with some special lotion that she brought. Thank you Irene!

Early Sunday morning we met Glizza, Roy, Tyler, Natalie, and Daniel at the Outrigger Canoe Club to go swimming. The morning was beautiful and swimming with all of them was very special. We missed Joyce who did not get up for the event. We then had a great brunch at the Outrigger. And we should do that more often. Then as usual I spent the rest of the day with Daniel and Natalie as Jan took his day off.

Last week we also met with several potential caregivers. I think we have found a few caregivers that will work to fill out Glizza's schedule. However, we will still continue to interview for others. Each day this week we will be having a new caregiver to work with. It will be a challenge and we're going to make it fun. Malia will be here to act as a backup.

Happy Birthday Bella! Today is Isabella's 5th birthday. I wish you were here so Nana can give you a big birthday hug! Happy Birthday!

Good night Bella, good night Spike Nana loves you!

Aloha, Vi

Blog 28: Wednesday

2009-07-15T23:08:00.000-07:00

Three more days until Glizza is gone. Glizza has been a wonderful person to spend the time with. In the last 20 months, Glizza and I have shared many experiences. Some experiences you would never believe! We're going to miss Glizza alot!

On Monday, I met with Corey my speech therapist and Bruce, the DynaVox specialist. A DynaVox is an AAC (augumentative and alternative communication) device which will help me communicate when I am no longer able to speak. The DynaVox is the size of my computer and will be fitted on my powerchair. It is both a communication device as well as a computer. I will be able to put my own messages and phrases that I often say into the DynaVox and I will also use my own voice. As you can see, one has to be proactive in getting the needed equipment before the disability sets in. Since I can no longer move my hands to type, I will be using a headmouse to control my computer and DynaVox as I do now with my own computer. So, in approximately 6 to 8 weeks, I will be getting the Dynavox and start to practice.

Yesterday was a typical physical therapy day. Following physical therapy, Glizza and I met up with Malia, Spike, Kathy Q. and Peggy and attended a movie at Kahala Mall. What a nice outting!After the movie I met Jan at the monthly ALS support group meeting, which is held at Queens Medical Center. At the ALS Support Group, families affected by this disease come together to support each other and share their stories on how ALS affects their lives. The support group led by Divina, helps to educate families of the disease and helps families find resources on care. It has been very helpful to us as we journey through this disease process.

We continue to interview and meet new caregivers to replace Glizza. We continue to look for at least 3 caregivers to fill Glizza's place. This has been a difficult and challenging job for me as I will have to teach each one how to care for me. I look forward to the challenge.

The applications for Vi's Adventure Trek and Run are all out. We will also be posting the race application to this site. PJ, our race director, is still looking for volunteers.

Godnight Spike! Goodnight Bella! Nana loves you!

Goodnight Daniel, who is in Bali!

Aloha, Vi

P.S. Tomorrow is swim day so if you want to come we're at Kaimana Beach at 9:30am. Look for the beach wheelchair sitting empty in the sand, we'll be in the water!

Blog 27: Sunday, Sunday, Sunday!

2009-07-12T19:26:00.000-07:00

On Saturday, we were invited to go to the sand bar at Kaneohe Bay with some friends. Jan and I woke up at 0 dark 30 to make sure we would be on time to meet our friends at Kaneohe Marine Base. We went to Starbucks to get our keraff filled with coffee and then hurried to Waikiki to pick up Greg ad Trudy, who we invited as our guests. The day started out over cast and breezy. We met our friends Clay and Gail and their family at Kaneohe Marine Base. We loaded our boat and off we went circling the bay and taking the long way out to the sand bar. Everyone swam and some even tried stand up paddling for the first time. I must say, they did pretty good for the first attempt in paddle boarding. We brought my beach wheel chair and I was pushed around on the sand bar. How beautiful! As the day went on, the weather cleared and became a gorgeous day. The Koolaus stood green and majestic as we looked back to land. Gail fixed a wonderful breakfast of keesh, fruit and little pastries which was yummy! The feeling of being on the water and on the sand bar in the middle of the ocean is such an exhilarating feeling. It is also a time to reflect on how beautiful Hawaii is and how lucky we all are. Thank you Gail and Clay for inviting us to something that we love to do and sharing your company. After the long day, Jan and I were both exhausted.

Today, Sunday, we will be taking Glizza and her family to dinner to wish her farewell and to show her how thankful we have been to have her for the last 19 months. This is Glizza's last week with us and her last day will be on Friday. I can't believe how fast time has slipped by. Glizza had shared my journey with ALS in the last 19 months and has seen the progression of the disease firsthand. We have developed a strong bond of friendship and sisterhood. I am really going to miss Glizza, but I know she has to go on with her life. We wish her the very best.

Thanks again for making our Fourth of July BBQ a success. We were able to raise $3,600 for ALS research. Our next project which is the second annual Vi's Adventure Trek and Run is set for September 20th. Applications are now out. PJ, our race director, is still looking for more volunteers. If you are interested, please email me at jonesmeduskyvi@hawaii.rr.com. Remember, we are only taking 280 runners so send your application in ASAP. PJ has planned a great run and fun post activity.

Hope you all had a great weekend! Have a great Monday!

Find something beautiful that makes you smile. Did you notice that when you smile, you take in a deep breathe which is so healthy for you? So smile more!

Goodnight Spike! Goodnight Bella! Nana loves you!

Aloha, Vi

Blog 26: Happy Friday!

2009-07-11T13:18:00.001-07:00

Happy Friday! Friday is a day most of us look forward to and which takes us into the weekend.

Earlier this week, Glizza and I drove around town returning the things we borrowed for the picnic. The last few days we have been quietly resting and enjoying the time spent at home. We even took a rest day from aqua therapy, but did not give up on swim day. Malia and Spike have spent a couple of nights at our house. Having a baby around brings happiness and joy. There also appears to be a special energy surrounding those little perfect bodies. Thank you Spike for spending time with Nana.

As usual, swim day was energizing to the body and soul. Ocean water is so invigorating! Punkin, Elaine, Rene, Natalie, Kathy Q, Glizza, Malia, Spike and I had a great time soaking and floating
around in the crystal blue water. Everyone helps to keep me afloat as I exercise my arms and legs. This is the time, we all caught up on what's happening in each others life. We're all chatty Cathy! FUN! Today Spike was the center of attention as he smiled and kicked his legs. We girls all cooed and encouraged him on.

Today I met with my physiatrist for my monthly appointment. I am slightly weaker. The concern is when will I be ready to put the g-tube in. All of my physicians are ready for me to have this procedure done. The one thing that stops me is that I will not be able to go swimming. That makes me sad. On another note, I will be evaluated for head control for my power chair. That means I will be able to drive my power chair myself using my head.

Good luck to Punkin this weekend as she swims the North Shore swim series #2 at Waimea Bay.

Thank you to all. Remember to find something beautiful in your life that makes you smile.

Good night Bella. Good night Spike. Nana loves you!

God bless you all.

Aloha,
Vi

PS: I wrote this whole blog using my head mouse and one key at a time.

Blog 25: Swim Day..

2009-07-06T21:39:00.000-07:00

Since last Thursday, we have been extremely busy putting together our last bits for our fourth of July BBQ for ALS research, which turned out to be a great success. Now we can take a deep sigh of relief and go back to last Thursday's swim day!

On July 2nd, Thursday, our swim day was a hot, hot, hot day and in many ways HOT (Jeannie, you really missed it!)! Punkin and Bill, PJ, Glizza, Heidi, Heidi's Mom, Joyce, and Greg enjoyed the beautiful, cool, and soothing ocean. We all floated around in the current talking, massaging, kicking, and having fun. Believe it or not, I got dunked in the water three times which felt out of this world. Today we met old friends Wade and Celeste, whom I have surfed with for the last 20 years. Then we have new friends, Joyce who was visiting home from college (Glizza's cousin), and Greg who is visiting from Huntington beach. Then we have local new friend, Daniel. We have seen him for the last several weeks frolicking around us while swimming. The girls have truly admired him and his well cut physique...we were envious. Then we met him and he told us his story. He was once over 200 pounds and decided to take care of himself by changing his diet and exercising. His outlook on life was so positive that we could feel his good energy surround us. So we now admire Daniel for making a positive change in his life. We look forward to seeing Daniel again on Thursday.

I forgot to congratulate Punkin, Bill, Kathy Q, Stote, and others for finishing the first North Shore series swim from Sunset beach to Ehukai. This was Punkin's first 1 Mile swim. Congratulations Punkin!

Hope you all had a great 4th or July. We were so tired after the BBQ that we have done nothing. It's now Monday afternoon, Glizza and I have been goofing around and spending a quiet day at home.

Have an awesome week and make sure you smile at something beautiful.

Goodnight Bella! Goodnight Spike! Nana loves you!

ADIOS!

Blog 24: The Fourth of July MLB 4 ALS Barbeque!

2009-07-05T15:23:00.000-07:00

Take me out to the ball game, take me out to the park, buy me some peanuts and cracker jacks, I don't care if we never come back 'cause it's root, root, root for the home team ( sing along)....... it's Hot dogs, apple pie and baseball for our 4th of July picnic that was also held through out the U.S. to honor Lou Gehrig and to raise money for ALS research. Mayor Muffi Hannemann officially proclaimed July 4th as ALS Awareness Day. Our picnic was held at Keehi Lagoon Beach Park. The day was beautiful, sunny, and breezy. The tents waved and shimmered in the wind but we payed no attention and continued the day's festivities of food, games, and softball.

Although there were many other 4th of July events happening through out Oahu, we managed to have at least 100 people come to celebrate this event. Every one of our volunteers found their place and made this event successful. The barbie was cooking and smoking with hot dogs and Teri- burgers! Everyone came with an appetite and enjoyed the barbeque and the pot luck dishes that everyone brought and shared.The day opened with Kathy O's introduction with a Hawaiian chant and hula dancer. Jan followed with a talk about Lou Gehrig and then the day continued. Games such as tug of war and water balloon toss were played before the softball game. Most everyone thought they were too out of shape to go about jumping around but once out there, they had no fear and had a blast!! Prizes were given to all winners of the games. Every ten minutes, Natalie announced at least two raffle winners winning such prizes as T-shirts backpacks, shoes, watches, paintings, gift certificates, surfboard and water bottles. Thank you to all of the generous donors.

By the end of the day most of the food was eaten and a lot of juice water and soda quenched the thirst of all. Everyone left the park happy, filled, and with a prize in hand. And I myself watched the whole happy event from my power chair. Living vicariously through those around me with their running and jumping hitting and throwing and pulling the tug-of-war rope. It made me very happy to see all having fun and being more aware of ALS. Thank you to the ALS Support Group for all the hard work put into this late bloomed effort. Thanks to Devina, Nancy, Tammy, Tanya, Maile, Nicole, Lance, Tom and friends, Kathy, Jan, Glizza, Natalie n Nancy S. and Malia. If I missed anyone, know that I appreciate everyones help. Hopefully we will be able to do this again next year with alot more planning and gusto. Happy 4th of July!!!

Good Night Bella, Good Night Spike, Nanna loves you!!

Aloha, Vi

Blog 23!

2009-06-30T23:01:00.000-07:00

Hi again, it's another beautiful summer day. Don't forget to enjoy at least one thing that is beautiful each day. Today is Tuesday already. How time flies. So let me see, lets start last weekend when I had another counseling session which was once again was great. From it I learned about passion and empathy and that one cannot give compassion or empathy without giving it to one's self first.

Then on Sunday we celebrated Jennifer Dodson's baby shower with the ALS Support Group. There was a lot of good food to go around and beautiful presents for Jennifer's baby girl whose name is Jade.

Monday was a beautiful day spent at home enjoying the sunshine on our back lanai. Nothing could have been a better way to spend the day. Glizza's cousin Joyce who is home for the summer from college brought us Chinese food for lunch and it was yummy! Joyce is spending her summer studying for the MCAT test to get into medical school. So we enjoyed her company as she took the day off from studying. Thank you Joyce!

Today we, once again, attended Aqua Therapy. Wren, my other physical therapist, worked with me as Matt is on vacation. As usual we walked the pool and did are arm and leg exercises. We also had an appointment with my internist. The conclusion is that I'm doing as good as I possibly can and will return to see him in 2 months.

This is the count down for our Fourth of July picnic. I think there will be over 100 BBQs across the U.S. for this special event. So be sure to come out and enjoy the fun and raise awareness of ALS and ALS research to find a cure. Be sure to bring a beach chair to the park. We're looking forward to having a great time with you. The next few days we will be gathering all of the goods for our picnic.

Don't forget we are swimming at Kaimana on Thursday at 9:30am.

Have a beautiful tonight and tomorrow!

Until then, goodnight Spike! Goodnight Bella! Nana loves you! and God bless you all.

Aloha, Vi

Fourth of July Reminder!

2009-06-29T23:23:00.000-07:00

To my dear friends and family,

On July 4th, the ALS community throughout the U.S. will be honoring Lou Gehrig’s 70th anniversary from his retirement from major league baseball. Lou Gehrig’s diagnosis of ALS caused his retirement from the New York Yankees who he played for his entire baseball career. On July 4th, many barbeques through out the U.S. will be held to raise money for this awful disease that strikes approximately 5,000 people each year. Since Lou Gehrig’s diagnosis 70 years ago, there has been no found cure for this disease.

ALS is often called an orphan disease because no major drug company has committed to finding a cure because there are so few people stricken with this disease and therefore, it is not profitable for these companies. ALS TDI (Therapy Development Institute) is one of the nation’s largest research centers for ALS with the sole mission to find a cure for ALS. All contributions for research are donated by family and friends of patients with ALS. In the 70 years since Lou Gehrig’s diagnosis, there has been little break through of what causes ALS and no major break through for a cure.

Throughout the 5 years of my diagnosis, you have been very generous with your love and support. So once again, I ask for your support in this National push to both raise awareness and funds to find a cure. All money donated whether online or by purchasing a $5 ticket to our event will go 100% to ALS research. I will be calling upon you to come to our event on July 4th for fun, games, softball, food and remembrance of Lou Gehrig.

Aloha nui loa,

Vi

Long Lost Blog 22...

2009-06-26T23:08:00.000-07:00

Well, it has a been a fast and furious week. The week was filled with being a little tired, excitement and anxiety. Tired from not being able to sleep well for a couple of nights, excited that Mikala and Isabella are here visiting us and anxiety for wanting everything to go well during the week with Isabella and Mikala. Just like a mother hen herding her chicks around.

We all had fun with Mikala and Bella the short time they were here. We swam like fishes, ate lots of ice cream, visited the bug and insect exhibit at the Bishop Museum, went to the Aquarium, and did a lot of fun shopping. Apparently, the surf in Indonesia will be epic for hardcore surfers and Mikala and Daniel will be chasing those waves starting tomorrow. We will miss them a lot! The little time we had was precious. Bella was on her best behavior, being polite and making many new friends everywhere. At four years old, she is a great story teller. Mikala and Bella spent most every night at my house in Tantalus. The weather up in Tantalus was cold to both Bella and Mikala who are used to Bali's warm, humid weather.

Tuesday as usual, I worked hard at aqua therapy. Using a water belt and balancing on a water buoye, I walked laps on the short course of the pool. The short course is approximately 15 feet which I walked approximately 6 laps (1 lap = down and back). Just imagine, I was pooped out walking a total of 180 feet. That was hard work! Then we did bicycles in the water and arm exercises. My physical therapist Matt is on vacation to visit his family in Canada. Have fun Matt!

Thursday was swim day which was very special having both Bella ad Spike there. Poor Spike did not swim because he is experiencing his first cold. Instead he, Malia and Aunty Karen took a walk at Kapiolani Park. Thanks again to our regular swim crew; Kathy Q., Punkin, Bill, Heidi, Jeannie and Glizza. Miss you PJ, see you next week! Just wanted to let you know that Heidi Bornhorst, our swim day photographer, will be running for city council woman for the areas Palolo Valley to Makiki. We are so proud of her and know that she is a great candidate for this position. Don't forget that Marian is running the Western States 100 Mile Race in California. If you are reading this blog today, SaturdaY, be sure to send Marian good thoughts.

Goodnight Spike! Goodnight Bella! Nana had such a wonderful time with you and God bless to all of you!

Aloha for now, Vi

Blog 21!!

2009-06-22T23:28:00.000-07:00

The weekend was filled with on the North Shore. Mikala & Bella arrived on Saturday morning. Mikala was a bit worn out however, Bella was like an energizer battery bunny, on the go, visiting her little friend and swimming at Rocky Point like a fish. Later that afternoon, Bella finally gave in to a deep sleep in place, 1/2 on, 1/2 off of the swinging bench with Natalie at her side. It is so wonderful to watch her energy and to think we were like once before.

Sunday, Father's Day, was spent celebrating all the fathers in our family (Jan, John and Mikala). Great Grandma Jones from California was also visiting the kids and grand kids, especially Bella & Spike. Happy Fathers Day to all of you!

The afternoon was spent in the lush, green yard watching the waves build as the day went on. Watching the ocean brings a soothing comfort to any one's soul.

Monday was also spent on the North Shore with Malia, Mikala, Daniel, Bella, Spike and Grandma Jones. It's so nice having the whole family together. Wish Emma could have made the trip, however, we understand that this is the busiest time of the year for her swimwear business. Emma, we're taking good care of Bella and we miss you too!

This week again has started off with a bang! Hopefully Natalie and I will be able to blog more this week. We're nearing the 4th of July BBQ! You can purchase your tickets through Divina (262-5797) or through us. My cell is (256-9607). We're looking forward to seeing you on the 4th!

Goodnight Spike, Goodnight Bella! Nana loves you!

Aloha, Vi

Blog 20....

2009-06-19T23:55:00.000-07:00

(Nana and Spike)

Whew! It's already Friday. Since our last blog, life has gone on and on and on with many things happening. Our days have been so filled that by the time it was time to blog at night, I was too tired and pooped out. Glizza's first week home and we're glad she's back. Three weeks away from home and so many things to learn such as the AVAP, the new bed and Big Red. Welcome back Glizza! Speaking of Glizza and Big Red in one sentence, today we had a little encounter with a wall while negotiating a turn in the parking garage at Jan's office. The hit was on the side passenger sliding door where the ramp is stored. Luckily, the door can still be opened and the ramp is working fine. The main thing is that we are safe and did not involve another car. So Glizza, don't worry, it is just a car! Big Red has now been broken in officially!

Today, I have legally put my life in order. It has taken Jan and I five years to complete this task of doing our wills, trusts and medical directives. Now I feel that anything can happen and I am comfortable knowing that my wishes will be carried out. This is a tedious process, but once done, it gives one peace of mind.

On Tuesday evening, it was nice visiting with my friend Nancy who I went to college with and have not seen in about 5 years. Nancy also loves flowers and brought me the most beautiful bouquet of mixed florals. So thank you Nancy and hope to see you soon in the near future.

(Jeannie, Me, Elaine and Heidi)

(Heidi, me and Elaine)

Yesterday was Swim Day at Kaimana. As usual we all had fun. It was a real work out for me. During the whole hour, I was constantly moving my legs or arms and someone was massaging my bottom, massaging my hands, and massaging my legs while we all talked. Thanks Peggy for the red rash guard! As you can see, it fit perfectly. So thanks again for swimming with me Punkin, Bill, Jeannie, Heidi, PJ, Elaine, Glizza and Aunty Karen who opted out of swimming and watched for sharks from the beach. Hope to see you all next Thursday! And, if any of you are free and want to come to join us, feel free to come. We're there at 9:30am, every Thursday!

(Glizza and Jeannie)

(Aunty Karen on the look out!)

We have been working hard on the Fourth of July BBQ fundraiser for ALS research. There have been many generous supporters that have contributed prizes for our raffle and food. So thank you to the Hawaii ALS Support Group, with Divina leading the charge. Thank you also to Tanya for taking the time to send out many donation letters. Tickets will be sold by members of the Hawaii ALS Support Group. The tickets will be $5 and good for a hotdog or hamburger, beverage and a raffle ticket. You are also welcome to bring a potluck to share as this grass root event is like a family picnic. We are looking forward to seeing all of you come out and join the fun of Fourth of July playing softball in remembrance of Lou Gehrig and many other Fourth of July games. You may be happy to learn the location of the picnic has been changed to Keehi Lagoon Beach Park instead of Kualoa Beach Park.

As I dictate this to Natalie, I have to smile as Bella and Mikala are on their way to Hawaii. So I can't wait!

Goodnight Bella! Goodnight Spike! Nana loves you!

Aloha, Vi

P.S. Thank you Aunty Nene for the deliscious shoyu chicken and to Karen for the soup.

Blog 19: It's Manic Monday!

2009-06-15T16:18:00.000-07:00

Just another Manic Monday (you're supposed to sing this)! We're busy working on our Fourth of July BBQ fundraiser. I know it's kind of late but we're putting in a good effort so I hope if you're reading this, you'll come and have fun at the barbecue. The final location will be determined by this afternoon. So Natalie and I have been busy on the phone and on our computers sending out letters for support and donations. We can't believe it is already 1:30 and half the day has already gone by.

This morning, Rennie and Daniel were busy trying to figure out if my new micro air mattress could fit on mine and Jan's therapeutic frame. After a long time of looking and moving things around, they were successful in putting the beds together into our present koa bed frame. I am happy about that as the hospital bed and our present king size bed cluttered our bedroom which Jan was not too happy with. So we solved the bed problem and everyone is happy.

Natalie is solo today as Daniel is catching the big summer south swell. How fun! This weekend was restful and pleasant. We were visited by our friends Jeff and Jamie who spent the afternoon with us catching up on our everyday life. Have a great trip Jeff and Jamie! They are off to the mainland having fun with their kids. Ryan, his mom and family also came over on Saturday night to visit us. And then on Sunday morning, Marian and Neal visited before their training run of repeats on Hog's Back. Marian is ready to run the Western State's 100 Endurance Run which starts in Squaw Valley California and ends Auburn. This is one of the most grueling and famous 100 mile endurance runs. The run starts June 27th. You can go onto http://webcast.ws100.com/ Go Marian!

Getting back to Friday when I saw my two physicians. My breathing test or pulmonary function test (PFT) is at a slow decline. He said my breathing is declining on a slow steady pace, however because the muscles around my mouth are weakening, there may be air escaping on this test so next time we will use a snorkel mouth piece to more accurately measure my breathing. Good news is he does not think it is urgent to put in the G-Tube now. He also said that I look better than what my medical status says. The last time I was tested, my breathing was at 27%. I also weighed myself for the first time in two years at which time I weighed in at 111 lbs and now am 104 lbs. Alot of you ladies might be thinking this is good, but not so. As you may remember from an earlier blog, ALS patients live longer with more weight. The week before last, I ate 7 Hagendaz ice cream bars over a ten day period. So where did all those calories go?? My physiatrist, after going over the strength of all of my limbs, indicated that my hands were now weaker than the last time I saw him two months ago. So overall, I'm hanging in there and I will focus on swimming and eating.

So thank you to all my friends and family who has helped me make my life incredibly beautiful by your presence, generosity and support. Thank you again Violetta, I really love my bed!

Goodnight Bella, see you soon! Goodnight Spike, see you sooner!

Welcome back Glizza! Who is taking this Monday off to recuperate after three weeks of traveling. We are looking forward to seeing you tomorrow!

Aloha, Vi

Blog 18: It's Thursday!

2009-06-11T22:48:00.000-07:00

(My beautiful orchid that my dear friend Henrik gave me)

Hi all! We are now playing catch-up to the blog. Since our last entry on Tuesday, I have attended physical therapy, interviewed another potential caregiver, looked at Kualoa Beach Park, got a new bed and took a lab test to find out my CO2 level. All of these activities, have centered around Jan, Natalie and Daniel's schedule of activity.

For the last few days, I have been running as hard as I can away from catching a cold. So, on Tuesday, I decided to do land therapy instead of Aqua Therapy so not to exacerbate my cold. Daniel and Natalie have been taking good care of me, filling me up with vitamin C, green tea, nano greens and Zicam.

My physician called me last weekend advising that I may have to have the Gastro Tube (I call it the gastronomic tube or the feeding tube) placed in the next month or near future. I knew this was coming about but was hoping it to be later, as once the tube is in place, I may not be able to go swimming anymore. So I was very disappointed that I couldn't go swimming today because of this cold. I want to be able to swim in the ocean with Isabella who will be coming to visit me in a couple of weeks.

Instead of swimming, Kathy, Punkin, Stote and Peggy came to our house and spent the afternoon. Picture this, Peggy is brushing my hair, Punkin is massaging one of my feet and Stote is massaging the other foot while Kathy is massaging Stote's back. How fun! Sorry we don't have a picture to prove it! Peggy and Stote even passed toileting 101 by taking me to the potty. Good going Stote and Peggy for the first time! They also relieved Natalie so she could go to work at Jan's office and gave Daniel a few hours to catch the south swell. So, we all thank you for coming up and making my day. Share the Care is here!

Last week, Daniel and I were at ACE Medical Supplies in Wahiawa to look for a sheep skin to put on the back of my power chair. While there, we talked to a sales lady who turned out to be the owner and a nurse acquaintance of mine. When we both recognized we knew each other, Violetta asked if I had a good bed. I told her we had a bed but I have been sleeping in my power chair for the last couple of weeks because of comfort. Violetta said she wanted to give me an air flow mattress that would prevent pressure sores and give me a good night's rest. So today, we received an Invacare MicroAir system bed. I don't know how to thank you enough, Violetta, as I don't think medical insurance would cover this bed. So thank you Violetta with all my heart. My bum thanks you too!

After the bed arrived, Daniel and Natalie had review class on the Hoyer Lift. It was fun to watch Daniel and Natalie learn how to use the Hoyer Lift, transferring each other from the bed to the wheelchair. Natalie was pretending she couldn't move and Daniel put her into the power chair with the lift and she slithered down the front of the wheelchair to the floor. Practice, practice, practice!

Also this week, I was scheduled for an arterial blood gas lab test that measures acid/base balance, PH and the CO2 level in your blood. It is not official, but the lab tech said my test results were fine. Tomorrow I see my pulmonogist for the results and take another pulmonary function test (breathing test). Wish me good karma for blowing into the tube.

We are still working on the Fourth of July BBQ and may change the location depending on what we can find available. So we will keep you posted as time is of the essence. We are still looking for anyone that may be able to donate food such as hot dogs, hamburgers, buns, condiments, beverages, etc.

Until tomorrow...

Goodnight Bella, Goodnight Spike! Nana loves you!

Goodnight Glizza!

Aloha, Vi

Tuesday!!!!

2009-06-09T22:40:00.000-07:00

Hi folks! Well, I guess we're getting ready for the Fourth of July BBQ that marks the 70th Anniversary of Lou Gehrig's retirement from baseball after his diagnoses of ALS. Natalie and I have been busy coordinating this event. After calling many parks to find a location to hold this event and play softball, we finally found a park not in the Honolulu area as we would of liked, because they were all taken up by baseball! However, we will be having our BBQ at Kualoa Beach Park which will be beautiful and we'll have plenty of room to play softball! We even talked our local ALS Support Group to help us in hosting this event and we're looking forward to having alot of fun! On another note, we are looking for donations for food and beverages. If you know of anyone who can help us, please let us know.

It is pretty late and Natalie who has been with me all day, has to go home now. We'll blog tomorrow and fill you in on all that is happening this week. Never a dull moment! Thank you for your love and support. Talk to you tomorrow!

Goodnight Spike, goodnight Bella! Nana loves you!

Goodnight Glizza!

Aloha, Vi

Fourth of July BBQ & Softball Game Invitation!

2009-06-09T17:54:00.000-07:00

The link for http://www.violetsweb.alscommunity.org/ is to the right, which is labeled "DONATE NOW to ALS TDI to find a cure" . The link takes you to the main Family Sites page. From there, click on Hawaii on the map and you will be directed to the ALS TDI, Violet's Web site where donations cane be made! Thank you!

Blog 17...

2009-06-06T23:16:00.000-07:00

Before we go onto the weekend, as I told you on Friday, we had the nursing agency come to our house. They were there at 7:30am to meet Natalie, Daniel, Jan and I and learn my morning routine. So there they were, at 7:30am in my bedroom to learn the routine. It's a good thing that I'm a happy morning person and not Oscar the Grouch in morning. The experience was amusing to have everyone following me into the bathroom and watching me do my morning bathroom activities. Overall, the experience was good as I enjoyed meeting our potential caregivers. We will be having more of the agency's caregivers come to meet and observe my daily routine. We also have others on the list to interview. Our caregiver search has been steady and we have had friends give us other potential recommendations.

After the working morning with the caregivers, Daniel, Natalie, Karen and I had fun by going to the movies to watch "Land of the Lost" starring Will Ferrel. Will Ferrel is so funny and crazy! Remember, laughter is good medicine.

So far the weekend is going smooth and mellow. Nancy and Al from Maui, are spending the weekend with us and we are enjoying their company. Al and Nancy have been fantastic and gracious and they always come and visit and take good care of Jan and I. We, Jan and I, always look forward to spending time with them. Thank you again Nancy and Al!!!

Today, I had my third counseling session. It is important for me to tell you this because as a person with a chronic illness, there are many issues to resolve and to learn how to work through them. Today, I learned about the different ways people communicate and how communication is understood by others. I also learned about acceptance and letting go. Counseling has opened up my understanding and acceptance of this devastating situation and has given me freedom to accept myself and others as they open their hearts.

Natalie and I have been busy looking for a baseball park to host our Fourth of July BBQ. We will be having a website on ALS TDI (the link is to the right). We will continue to keep you informed on our BBQ.

Hope you are all having a great weekend. While Janice, who is the coordinator for Share the Care is on vacation, Marian has volunteered to fill her shoes during the time she is away. Hope you are having a great time Janice and thank you Marian!

Goodnight Bella! Goodnight Spike! Nana loves you!

Goodnight Glizza!

Goodnight Malia!

Goodnight Mikala and Emma!

Aloha, Vi

P.S. A Note from Natalie: Hi Web! I know that a lot of people have been asking how to post comments. So here again are some quick instructions how:

1) You'll first have to go to www.google.com
2) at the top right side of the page click "sign in." If you don't have a google account, you'll have to create one. You can use whatever email address you regularly use as your username.
3) After youve created an account, go to violetsweb.blogspot.com and select "follow this blog" on the bottom right side.
4) Now you should be able to post comments.

Vi loves reading all of your comments, so keep them coming! Also, please be sure to make Violets Web your home page so you can you can always stay up to date on what's happening. Thank you!

"Big Red" the new van!

2009-06-06T14:59:00.001-07:00

Hello everyone, Here is the long awaited picture of "Big Red", our new van that is able to transport the powerchair around town. We're still getting the hang of it and learning what everything does, so don't park too close if you see us out because we may accidentally take you out with the ramp!

Blog 16: Aloha Thursday!

2009-06-05T01:31:00.000-07:00

Glizza has been gone for 2 whole weeks today! Daniel and Natalie have been exceptional caregivers. So exceptional in fact that I have forgotten that it has been 2 weeks since Glizza left and Daniel reminded me today that he and Natalie have been with me for 2 weeks, not 1 like I thought. So, I guess we're having fun!

Today was swim day at Kaimana Beach. Punkin, Bill, Heidi, Natalie, Daniel and I enjoyed the beautiful ocean. We were having fun floating, exercising, and gibbering away. We came up with several reasons why swimming is therapy:

Reason 1: Breathing the fresh air

Reason 2: Being in the ocean

Reason 3: Being outdoors

Reason 4: Being with good company

Reason 5: Exercising to promote range of motion and to increase circulation

Reason 6: This is the only time I am not sitting on my bum

Speaking of buns, booties and bums, Punkin got the privilege of massaging my booty as I am constantly sitting on them and my booty, at times, causing more pain than you could imagine! Heidi is learning how to stand up paddle on Jeannie's old cloud board. Go Heidi! Also, I want to mention that I think the AVAP is really working because I was able to be in the water longer, talk more while in the water and have an easier time breathing.

Tomorrow, the agency's caregiver will be coming up to our house for part of the day to observe Natalie on my morning routine care.

We have volunteered to host a 4th of July BBQ/baseball game to raise money for ALS TDI (Therapy Development Institute - the link is to the right of this blog) and honor Lou Gehrig who has put a name and a face to this disease. ALS TDI has a goal to host a 4th of July BBQ in every state. This 4th of July marks the 70th anniversary of Lou Gehrig's retirement from baseball after being diagnosed with ALS. So, mark your calendars and watch for more info on our blog about this event. It will be a lot of fun and Hawaii will be represented. You can also go to the ALS TDI website for more information as well.

Malia and Spike have gone to California for a couple of weeks and we will miss Spike's cooing. So, we're thinking of you Malia and especially Spike!

My brother Al and sister-in-law Nancy will be coming to visit us this weekend. Al & Nancy have been very close to Jan and I and we have all gone to Bali together the last 4 years, shopping, surfing and eating! We're looking forward to seeing Al & Nancy. Oh, another important thing about Nancy is that she and her brother were diagnosed with breast cancer two summers ago. Nancy just completed and participated in a 39 mile walk in Massachusetts to raise awareness and funds for breast cancer. We love you Nancy (and Al too of course).

Goodnight Spike, Goodnight Bella! Nana loves you!

Good night Glizza!

Goodnight Y'all! I love you!

Aloha, Vi

Blog 15: It's Tuesday!

2009-06-02T22:41:00.000-07:00

I can't believe it's already Tuesday and once again we're going to aqua therapy. Just standing in the pool (this is an exercise for me) with Matt, was difficult to do today. I could feel my legs buckling under me. As usual, we included exercises for the arms, legs and hips. Practice, practice, practice....until next week!

I also used my AVAP for 25 minutes today which was easier to use today than yesterday. When looking at the picture of me on my AVAP, don't be frightened as it does not look as bad as you may think. Believe it or not, the mask is soft and comfortable (oh no!!! Natalie just showed me the picture and it does look bad!). Note that I am sitting in my power chair that I use more and more each day. I have even been sleeping in it at night as I find it more comfortable than my bed. The only thing I need is a protective cover or something for my seat to absorb the moisture and keep me cool. It's been weird having Jan sleep on a huge bed and me in my power chair.

Staying on the North Shore has been fun and nice to have a different perspective of living. This is my fourth night here and Jan thinks it is about time I come home. I haven't forgotten about him, in fact we brought him a nice lunch to share with him today. I'll be home on Thursday, and ready to meet the new caregiver from the agency on Friday morning. The new caregiver, will assist and follow along with Natalie on my morning routine of getting up, toileting, grooming and breakfast. Wish us luck! If any of you know of anyone interested in being my caregiver to replace Glizza, let us know or call us.

Congratulations to Stote, who completed the Honu Half Ironman Triathlon under an unusual circumstance. Check this photo out. Stote split his wetsuit and was forced to use duct tape. See, duct tape really works wonders!

Another thing I want to mention is that Lorren Walker set up a Share the Care with her friend on Maui whose daughter is ill. Way to go Lorren to spread Share the Care with others!!!

Thank you Daniel and Natalie for putting up with me all day and all night! And thank you Malia for baking some delicious scones and making us a few dinners.

Goodnight Spike. Goodnight Bella! Nana loves you!

Goodnight Glizza who is having fun in France!

Aloha, Vi

Blog 14: This Weekend!

2009-06-01T23:04:00.000-07:00

Summer is here! The weather has been hot, hot, hot and sticky. Just imagine what it is going to be like in a month.

We spent a quiet weekend at the North Shore with various friends and family. It was nice not to have to go anywhere or be on a time schedule, so nice! I watched the Mokuleia Sunset with my friend's mother who was visiting from California, while Jan and Don paddled out for exercise. We then had a delicious dinner together. The following night, we had dinner with our neighbors.

We brought my power wheelchair for Jan to practice driving as I am not able to drive it myself. I put my life in Jan's hands as he swerves and speeds down the pathway. He treats it like his toy remote control car! I think he needs more practice. However, Daniel, Natalie and Glizza are pretty good driving my power chair. Daniel says it is because they were brought up playing video games.

The kids came over to eat and take me swimming in the salt water swimming pool. Natalie, Daniel, Malia, Spike and Jan all had a fun time swimming together. I hope we do this more often as it brings family bonding and more exercise for me. Mikala, Emma and Bella will be coming to visit us in a few weeks and they too will join us swimming! Yay!!!

I started using my BIPAP AVAP today for 15 minutes and will gradually increase the time. Using the AVAP is like having someone automatically fill your lungs with air. For me, it was filling my lung spaces that have not been used due to the loss of the use of my chest muscles. After 15 minutes of being on the AVAP, removing the mask created a feeling of difficulty breathing because I was not able to take in as much air on my own as the AVAP put in. However, after my breathing returned to normal, I felt better.

We are in the planning stages to have a second annual Vi's Adventure Trek and Run to be held September 20th at Kualoa Ranch. We will raise money for ALS research and raise awareness of this disease. So, stay tuned for more information. This race will be as much fun or more than last year.

Daniel, Natalie and I ended the day by watching a beautiful sunset at a secret surf spot in Mokuleia. The evening surf was glassy, as Daniel ripped and shredded for an hour and finally had to come in, not on his own accord but because he was not wearing a leash and his board washed in without him. Natalie and I watched 2 big honus diving in the shore break. It was the perfect end to a perfect day!

Speaking of honu, congratulations to my friends who participated in the Honu Half Ironman Triathlon on the Big Island....Stote, Mati, Ruth, Wendy, John and others.

Goodnight Bella. Goodnight Spike, Nana loves you!

Goodnight Glizza!

Aloha, Vi

Lucky Number 13!!!!

2009-05-29T20:14:00.001-07:00

Boy have we been busy and the week is not over yet as we go into the weekend. Since we last blogged on Wednesday, we had another beach day, finally got the AVAP and had a Hoyer Lift delivered to our house in town. On top of all of that, we celebrated life such as Daniel's birthday and, mine and Jan's 15th anniversary. Yesterday, we also went to Kuakini Hospital where I took my swallowing evaluation. We continued to interview candidates to replace the Super Glizza. This weekend, we will be attending graduation.

The best news of the week is my swallowing evaluation went well. During this test, an xray video, videos my swallowing while eating various types of foods given to me. Barium is a substance put on all of the foods and is what makes the food detectable on the xray video. I ate foods such as fruit cocktail with barium, bread with Barium and drank Barium water. Yuck, not something I would like to eat everday! The results showed that the base of my tongue is weak and therefore my swallowing is good but not as good as a normal person and the best result is that I am not asperating silently which means liquids or foods are not going into my lungs. I am encouraged to do my swallowing exercises.

(Daniel and Natalie had to wait behind the curtain)

Swimming on Thursday, once again, was fun. The morning started out raining and we almost cancelled until the sun creeped out from behind the clouds. Daniel, Natalie, Malia, Spike, PJ, Bill, Jeannie and Kathy Q. were there to have fun and get wet. The transition of beach to sea was alot smoother. I think my friends are getting the hang of it !!! So everyone got a turn holding and helping me to do my exercises for my legs and arms. Thank you again to all of my friends and see you next week as I love swimming with you!

(Jeannie, PJ, Kathy Q., Natalie, me and Bill)

(Thank you Hana for suggesting the life jacket. We're going to try it again next time)

(Spike is a water baby just like Nana!)

In this disease, one has to be proactive in what is to come and needs for thise disease. The list of needs is endless such as getting registration for the new van, turning over power of attorney, completing the health care directives, getting the AVAP and Hoyer lift, starting Share the Care, actively looking for caregivers to replace Glizza (which would be possibly at least 3 people) and continually transitioning to new equipment. Coordinating and completing all those tasks is a job in itself that Jan single handedly completes while working his full time job. So thank you Jan! Our house is slowly being filled with the necessary medical equipment.

On Thursday, we celebrated Daniel's 26th birthday and my and Jan's anniversary. I want to thank Daniel for completing a whole week with me. Poor Daniel, he has been a fish out of water. Mikala, if you are reading this, Daniel wishes he could have been there and hopes you are getting great waves. So Daniel and Natalie had a really great birthday dinner at Sosobune in town while Jan and I had alone time having dinner at the Outrigger.

(Natalie baked Daniel and really cute cake!)

(Dan wishing for good waves...)

On Sunday, we will be celebrating with Brandon, at his graduation. Brandon is one of the boys that works for Jan in our forest yard for the last 3 years. Congratulations to Brandon and we will miss you next year as he goes away to college in California.

Thank you Randy and Crystal from the Big Island, who brought me beautiful anthiriums.

Goodnight Bella, Goodnight Spike! Nana loves you!

Goodnight Glizza!

(PJ, Vi and Spike peeking through the back)

(This weeks beach gang!)

Aloha, Vi

Blog No. 12!!!

2009-05-26T22:57:00.000-07:00

Hope you all had a great Memorial Day weekend. Now, it's back to work!

Natalie, Daniel, Malia and Spike have been taking great care of me so far, since Glizza has been gone. Well everyone, except for Spike who made a great big mess on his Mama's lap today while visiting her friend, Cappy's store. So Glizza, all is well at home!

On a bitter sweet note, we bought a Handicap van that will allow my power wheelchair (300 lbs) with BMW wheels and me to travel anywhere on Oahu. In keeping with my spirit, the van is deep red, and I named it "Big Red." So, I am happy about getting the van, however, sad that I need it and will need to give up my beloved "Olive", my green SUV.

I attended another PT session, this time I'm back into the water... how nice as it was 88 degrees outside today. Prior to going into the water, Physical Therapist Matt, showed Daniel how to do range of motion for the legs and arms and taught him the importance of doing this every day. Range of motion is important to lengthen the muscles that shorten from inactivity. Because I am in one position most of the day, I look forward to anyone doing range of motion on my arms and legs.

Finally, tomorrow I will be getting my AVAP (non-invasive breathing machine). Last week we mentioned the benefits and requested this from my physician. I will be fitted for a mask that goes with the AVAP and will be taught how to use it. So, we will let you know.

A special thank you to Susan and Marc Lanci of Sand Diego who generously donated a substantial sum of money in my honor to MDA - ALS Research Augie's Quest. So thank you, thank you, thank you again! As many of you know, ALS is an orphan disease, which means that no major drug company is trying to find a cure. Therefore, most research is funded by private donations (families and friends like Marc and Susan).

I want to thank you all again, for your support, love, and prayers. Every night, I thank the lord for friends like you and pray that He will bless and look over you.

Goodnight Spike, Goodnight Bella! Nana love you!

Goodnight Glizza! Aloha, Vi

P.S. To my wonderful husband, thank you for taking good care of me this weekend. Glizza would be proud!

Blog 11!

2009-05-24T21:51:00.000-07:00

On Friday we wished Glizza Bon voyage!!! Glizza will be on vacation for the next 3 weeks. She will be in France with her french boyfriend, Antoine, attending a family wedding for the first 2 weeks. Prior to her departure, everyone was teaching her their favorite French phrases. Glizza, if you are reading this, we already miss you. Hope you're eating a croissant every morning. Au revoir! The third week, Glizza will be visiting her family who has just moved to West Virginia.

Natalie, Daniel, Malia and Spike will be filling in for Glizza. At this time, we will also look into the nursing agency's nurse aids to help us and to start integrating this service. In case you were wondering, we have been going over the forms that you filled out at our Share the Care meeting. We will be calling upon some of you, putting Violet's Web into action.

Thank you to Flu, Natalie's Dad, for bringing all the delicious foods such as Filipino desserts, apple bananas, papayas, pineapple lihing mui and coconut soup. Thank you also to Karen Char, and to my Aunty Nene for the soup.

Memorial Day at the North Shore has been blistering hot! Daniel and Natalie picked me up and drove me to Mokuleia to spend the night. Then, Sunday, we started the day by going to the open market and ending the day sitting in the front yard and Daniel and Malia's house enjoying the sparkling sapphire ocean. It was so hot that Malia gave Spike a bath in the front yard. I'm hoping you all had a safe and wonderful Memorial Day weekend.

Goodnight Spike, Goodnight Bella! Nana loves you!

Aloha, Vi

More Photos from Vi's Day at the Beach!

2009-05-23T12:28:00.000-07:00

(Spike isn't so sure...)

(Jeannie and Vi warming up after the water)

(What a team!)

(Show them how it's done ladies!)

(Jeannie and Spike soaking up the sun!)

(Don't worry Vi, you're in good hands!)

(That's more like it!)

Blog 10: Natalie's Birthday and Beach Day!

2009-05-21T20:54:00.000-07:00

Happy Birthday Natalie! We love you!

Today was a glorious, beautiful day to celebrate Natalie's 24th birthday! She is beautiful, strong, intelligent, loving and has an energetic spirit. Natalie has been the #1 backup for Glizza and Daniel's forever girlfriend (hopefully she'll be getting an upgrade soon!) We celebrated Natalie's birthday at the Honolulu Academy of Arts Cafe where the food was yummy and the company was great! Thank you Natalie for being the wonderful you!

Before celebrating with Natalie, I went swimming with a large group of my friends at Kaimana Beach. I have not been in the ocean for several months since attending aqua therapy and the cold winter water. Punkin, Bill, Kathy Q., Fran, Jeannie, Heidi, Glizza, Malia and Spike enjoyed the warm water and the warm sun rays of the mid morning. I can't believe how much my muscles are not functioning due to this disease since the last time we all swam together. We spent alot of our water time learning how to transfer me from the wheelchair to the ocean and then how to manage me in teh water as I need alot of secondary support. I think most of my friends today, were a little afraid to manage me in the ocean and to my friends who are learning to manage my body positions, don't be afraid! So today, I thought I'd call it "swimming 101 with Vi." I have to say, it was sucha great time, but I was pooped after the session and I know for sure Punkin was too! So, we're trying again next week. See you then!

Goodnight Spike, Goodnight Bella! Nana loves you!

Aloha, Vi

Blog No. 9

2009-05-19T22:51:00.000-07:00

Funny thing, yesterday I thought I had nothing to write about. But guess what? Last night as I was asleep, all these thoughts flashed through my mind of all the things that I should have written about, such as, having Mikala come and visit me for the last five days from Bali. On the day that I had nothing to write about, I spent the majority of Mikala's last day happily with him. Thank you Mikala, for giving me that time to spend with you and I look forward to seeing you, Emma and Bella again in one month. I am counting down the days!

Another friend in my life is Heidi, the plant lady of Hawaii, and a surfing buddy of mine from a long, long time ago. You probably saw all of the flowers adorning my house that were graciously given to me by Heidi from her yard. If any of you are interested in having someone to help you with your garden of plants, call Heidi.

Today was an especially long day. I went to physical therapy and speech therapy. I participated in land therapy today as I was not feeling well to go into the pool. At speech therapy, I learned one new exercise to strengthen my throat and vocal chords. My speech therapist also reviewed my chart to gather information for the application for a speech communication device called a Dynavox which will be used when I can no longer speak. This device will communicate for me with the use of either a head mouse or the eye gaze. As I dictate this blog over the phone to Natalie, I can really tell that my speech is going "to hell in a hand basket" (this is how Jan's mom, now passed away, would have expressed it). I have what's called, the ALS slur. I'll just have to double up on my throat and mouth exercises. I won't be embarrassed if you ask me to repeat what I say at anytime.

Another thing that happened today, is that I called my pulmonologist and spoke to him regarding a non-invasive ventilator called an AVAP and discussed with him the value of ALS patients using this before having to get a trache. ventilator. If you look on the MDA site (the link is located on the right side of this blog) and read the article on the longevity of patients with ALS, it states that ALS patients placed on a non-invasive ventalation can have their life extended to approximately another 3 years. I will be fitted for an AVAP hopefully by the end of this week. We'll give it the good old boy scout try and if it doesnt work... nevermind, it doesn't work.

All of our Hawaiian days have been so beautiful that I can hardly wait for Thursday when we all go swimming at Kaimana Beach.

Goodnight Bella, Goodnight Spike! Nana loves you!

Aloha, Vi

P.S. A Note from Natalie: Hi Web! I know that a lot of people have been asking how to post comments. So here is some quick instructions how:

1) You'll first have to go to www.google.com
2) at the top right side of the page click "sign in." If you don't have a google account, you'll have to create one. You can use whatever email address you regularly use as your username.
3) After youve created an account, go to violetsweb.blogspot.com and select "follow this blog" on the bottom right side.
4) No you are able to post comments.

Vi loves reading all of your comments, so keep them coming! Also, please be sure to make Violets Web your home page so you can you can always stay up to date on what's happening. Thank you!

Blog 8: Share the Care Day!

2009-05-17T21:27:00.000-07:00

Hello my web! What an awesome day! Jan and I are deeply touched with your overwhelming response to be educated about Share the Care. It was great to see so many of you, my dear friends, coming to my rescue. Your hearts are over flowing with love and Jan and I can't express this overwhelming feeling. Again, thank you. I foresee our web of Share the Care friends, family and others will blossom to something extraordinary. For me, I will get out of this experience a chance for me to know you better and you to know me better. I can also see that I may be able to teach you that the process of death can be beautiful when one has an abundance of love surrounding them. Also, you may learn not to fear death and the unknown. Kimi did a beautiful job facilitating the group in a loving and non-threatening manner. Having her here, holding our hands through this new journey is comforting as she has experienced this firsthand. Thank you Kimi for making this possible. Thank you also to Hana, from Peg's Legs, for sharing her experiences with Peggy Chun. Hearing both, Kimi and Hana, made the groups' uneasiness soften and lessened their fears.

Janice will be sorting and organizing all of the forms filled out at today's meeting and will be contacting you in the near future. I want to thank Janice for helping organize today's event and also for her future help. In the meantime, I will be making my "wish list" of things to accomplish. Remember, if you have any questions/concerns about Share the Care, and what was discussed today, please contact Kimi at kimi@peggychun.com. Be sure to look for photos from today's meeting which we will be posting shortly.

Thank you again to all and thank you for bringing all the great food! We have plenty of yummy left overs!

Goodnight Bella, Goodnight Spike! Nana love you!

Aloha, Vi

P.S. Today is my 5th anniversary of being diagnosed with ALS. I was diagnosed on May 17th, 2004.

Blog No. 7 and Counting!

2009-05-16T22:20:00.000-07:00

What a weekend! We attended the ALS Seminar at The Queen's Conference Center today. The conference was well attended by families affected by ALS, friends, vendors, and physicians. The topics discussed ranged from wills and trusts, care giving and an update on the current ALS research. Kimi Chun made a great presentation on the different aspects of caregiving which included the model Share the Care, that Peggy Chun used successfully. It was also nice to have a speaker from San Francisco to give an updated research development report. Michael Shannon, Director of Development for ALS Therapy Development Institute (TDI), spoke on the current research for ALS and answered questions from the audience. There were many prizes given out and I would have won, but Jan accidentally through my ticket away. Oh well! However, overall the conference was a success.

(me with Michael Shannon of ALSTDI)

(Chester, Gloria and me after the seminar)

Thank you to Daniel and Natalie for coming and supporting Jan and I today. We always love it when any of you kids can attend these ALS events with us to learn more about this disease that is plaguing my body. I love all of you.

Jan and I, went to visit Kathy's brother, Brian, at the Convalescent Center of Honolulu. Brian, has been living with ALS for 7 years and has been on a vent for the last 5 years. Brian has a beautiful smile and a positive attitude. We were able to bring him some leis to beautify his room and have aroma therapy smelling of ginger.

Tomorrow is our first Share the Care meeting/party where Kimi Chun will host the party and explain to all my wonderful friends, what is Share the Care. Our response to this meeting/party was just fantastic! Thank you all my dear friends, you are the angels of my life. Like I said before, don't be afraid that if you come, you will be committed. This is an opportunity for you to come and learn what Share the Care is all about. I am excited to see you all tomorrow!

You all have hearts of gold and smiles of the rainbow.

Goodnight Spike, Goodnight Bella! Nana loves you!

Aloha, Vi

Blog No. 6!!!

2009-05-14T23:19:00.000-07:00

It's another busy week! No slumming around here. I really have to thank Natalie for helping me do this blog each time. Natalie is my hands that pounds out this blog as I dictate to her the day's happenings by phone and tonight she is live, sitting next to me. I am capable of using my computer using a head mouse and if I would be doing this blog myself, it would take me all night to complete as my head mouse can only type approximately 10 words a minute or less. But I am thankful I am still able to use my computer. So now you know, for those of you who were wondering how I do it. Thank you Natalie!

On Tuesday, I attended aqua therapy and then speech therapy. After 5 weeks of having a cold, I finally was able to get back into the water for aqua therapy. The water was wonderful, at least 86 degrees. After 5 weeks, I find that my legs are weaker when standing. My therapist, Ren, had me do various arm exercises and walking in the pool to increase strength of my arms and legs. Speech therapy was at Rehab Hospital of the Pacific. Today, I learned exercises that should strengthen my throat muscles and help my swallowing. Here, try one of my exercises: stick your tongue out between your teeth, collect suliva in the back of your tongue and swallow. Another exercise is to sing at the highest pitch as you can (and you're not singing the "do, re, me" song!) This exercise tightens your vocal chords and also strengthens your throat muscles. Thanks for trying! If you like, I have a whole set of exercises to share with you.

As I sit here, dictating away, a little angel named Spike is blissfully sleeping in my arms. I feel so lucky and blessed. I should mention also that Malia, Mikala, Daniel and Natalie are here at my house for the night. Now I am doubly blessed!

Today, Fran, Punkin and PJ were up at my house for lunch to celebrate Punkin's belated 39th birthday (hehehe). Fran made an awesomely beautiful salmon salad and PJ brought some yummy white wine (I don't drink so I can't be sure, but it looked yummy!). Good luck to PJ this weekend at her golf tournament. It's always fun to celebrate birthdays with my friends. Happy birthday Punkin!

Jan and I met with Cory Lee (RN) who runs a nursing agency and will be helping us as needed as this disease progresses. When Glizza will be on vacation, the next two weeks, we will be trying Cory's staff out to fill Glizza's spot. Natalie will also be here to help direct my care.

Spike and I will say good night now. Good night Bella, Nana loves you!

Have a great Friday!

Aloha,

P.S. Thank you for all the nutrition advice....we're going in the right direction.

More Mother's Day Photos from the Royal Hawaiian!

2009-05-13T16:09:00.000-07:00

(The Princess and her pillows!)

(Nana and Spike wiped out from all the Mother's Day Excitement!)

(Jan and Spike ready for bed)

(Natalie on the balcony of our hotel room)

(Glizza and Me at breakfast!)

(Nana, Malia and Spike at brunch!)

(Jan, Malia and Spike at breakfast)

Vi's Mother's Day Blog

2009-05-11T20:22:00.000-07:00

(Me, Natalie, Malia and Spike at the Royal Hawaiian Mother's Day Brunch)

Hi again! It's been three days since our last blog. So much has happened in my little life. It was Mother's Day this weekend and I hope you all were thankful for your moms who have nutured you through out your life. My mother's day weekend was just over the top! Malia, Natalie and I had brunch at the newly renovated Royal Hawaiian hotel. There was so much yummy food and, to make it even better, we got to spend the night there! This was Malia and Spike's first mother's day.

On Saturday, Jan and I participated in the Banana Man Chase, 5K Run around Magic Island to benefit the MDA. The day was beautiful as ever and the turn out was just fantastic. There were all sorts of runners chasing the bananas around the park. Jan pushed me in my big wheel, wheel chair and sadly we were not fast enough to catch a banana!

On the reality side of life, Jan and I decided and agreed that counseling would be beneficial for both of us as we go through this journey of this disease, called ALS. We had our first session this weekend bringing up many sensitive issues that were acknowledged and gained understanding of these issues invovled. I was glad and relieved at the same time that we were able to express to each other how we felt about this disease within our relationship. So, counseling is always a good thing to help you understand the issues that you face.

We had a long, fun and intense weekend and we made it through to another new week. So, have a great, beautiful week. Be positive, smile and take in the beauty of your world!

Good night Bella, Good night Spike, Nana loves you!

Aloha,
Vi

Vi Blog #5!

2009-05-08T00:10:00.000-07:00

Glizza and I were up early and out the door this morning, to the airport to pick up Malia and Spike. It was so nice to see malia and WONDERFUL to see Spike! Spike is two months old, and has changed so much in just two weeks. As an example, I would guess he weighs about 15 pounds. He is a chubby, yummy and solid! I spent most of the day cooing and gagaing over him. Oh, I forgot to mention that after picking up Malia and Spike, Glizza, Natalie and I went out to breakfast at Boots and Kimo's in Kailua. Their famous pancakes with macadamia nut sauce are out of this world! They had just the calories I needed!

This evening we visited our friends Paul and Daria. Paul has ALS and Daria was just diagnosed and has undergone surgery for brain cancer. Both Paul and Daria have exhibited such strength and courage through out all that has happened to them. Jan and I got to meet their whole family from Kansas.

Life is good, but very short. Make sure you find pleasure in at least one thing each day that makes you happy.

Good night Bella, Good night Spike. Nana loves you!
Aloha,
Vi

P.S. Thank you all for the comments! I love reading them. It is so great to hear from you all!

Vi Blog No. 4!

2009-05-06T22:21:00.000-07:00

Today started out as a great day. It was great because Jan spent the morning with Glizza and I having breakfast and enjoying the morning. Most of the day was spent at home (which is rare) reading, computering and meditating. It has been fun to go back the next day to look at our blog and read the comments. So keep them coming!

I met with my speech therapist today for a swallowing evaluation as my swallowing is becoming a little challenging. The swallowing eval. consists of eating a variety of kinds of food while the speech therapist evaluates my swallow. Now I have a set of exercises to do to strengthen my tongue and to swallow. On May 28, I will be having a swallowing X-ray where my swallow will be examined closely.

The one thing that I forgot to do today was to find something to eat high in calories. It has been difficult for me to eat junk food, which is high in calories because it hasn't been in my eating pattern. So I guess I better start changing my eating habits and really focus on those peanut butter smoothies at Jamba Juice. If you have any ideas, let me know!

It just occurred to me that I mention Glizza often and you may not know who she is. Glizza has been my arms and legs for the last year and a half and spends 10 to 12 hours with me each day. I call her my "partner in crime" or my "side kick. " She has been a GREAT help as well as a blessing. We are a perfect match as far as our personalities go. Can you imagine spending 10 to 12 hours a day with a person that did not match your personality? We spend alot of our day laughing.

I'm excited because Malia and Spike come home tomorrow from Australia. We can hardly wait to pick them up, squeeze Spike and spoil him!

That's it for another day, until tomorrow, God bless you all!

Good night Bella, good night Spike! Nana loves you!
Aloha,
Vi

Vi Blog No. 3!

2009-05-06T01:34:00.000-07:00

It was another beautiful day! Yesterday I mentioned that this month is ALS Awareness month. I forgot to mention that when you buy something from Peggy Chun's Gallery, a portion of the proceeds go to ALS research, so...Happy Shopping!

Today I attended Physical Therapy in Aina Haina. My therapist, Matt, put me through a grueling, hard session of upper body exercises. The exercises were hard for me but it would probably be a breeze for you. It's incredible to watch your muscles weaken.

I also attended an appointment with my internist, Dr. Davis, who is coordinating my medical treatment. It looks like I will be progressing to the next stage of ALS in the near future of having a peg (feeding tube). One thing on our aggenda is to help me to eat foods that are fattening because the more calories, the greater longevity for ALS patients. So malasadas, here I come!

Through out the challenges, life has been wonderful.

We do have some fun in the process of this disease. Glizza and I had a wonderful mother's day lunch followed by a mani pedi.

Please keep our friend, John Henderson, who was critically injured in a biking accident in your throughts and prayers. So all of you bikers out there, please be careful!

Goodnight Bella, who is living in Bali. Goodnight Spike, who is currently in Australia. Nana loves you!

Aloha, Vi

Vi's Second Blog

2009-05-04T22:15:00.000-07:00

Hi again! May is ALS Awareness month. The MDA will be holding ALS seminars at Queen's. Also, the Peggy Chun Gallery is offering great deals for the month. Mother's Day is coming up so lets support the gallery and ALS month. A watercolor print would make the perfect Mother's Day gift! Here's the link: www.peggychun.com

Today we had an appointment with with Dr. Kimata, the neurologist who we will now be seeing every 3 months. Be sure to look for Jan's Medical Report which will give you the present status of my medical condition. It should be posted by the end of next week as we have another doctor's appointment coming up. Jan and I also met with an HMSA case manager to discuss benefits for this disease.

Once Again, onto a lighter note. It was a beautiful day today! The sun was shining bright and it was hot! One of my favorite things to do on hot days is to shower outside. It's a sight to see Glizza in her pink and purple polka-dotted bikini scrubbing me down. It feels wonderful to take a shower and be squeeky clean! I never want to get out.

I had lunch with Mati and Ruth at one of my favorite places, Mocha Java. They are in training for the Honu Triathalon and Ironman Revisited. It was fun to catch up with them and to see how fit they are!

God blesses us! Thank you again for all your love and support. Until tomorrow....love you all!

Vi's First Blog

2009-05-03T22:45:00.000-07:00

Aloha everyone! It's Vi and this is my first blog. I welcome all of you! I want to start off by thanking Kimi Morton Chun for making this blog possible. I've never blogged before, so this is a learning experience. Hopefully my blogs will get better once I get the hang of it.

At the moment I am working on my advance health care directives which are not as easy to create as it seems. Once it is done, I will share it with all of you. Thank you Jan, Kathy Mah and Daryl Funai for putting in tedious hours of back and forth discussion.

On a lighter note, this weekend Jan's nephew, Clay Biddle from San Diego took time off his busy work schedule and family to visit us for a couple of days. We were so happy to spend this time with him! My friend Liz Toledo also came over from Hilo. I really enjoyed seeing her and spending time with her. Today, Sunday, I spent half the day with Natalie and her mom at the movies while Jan took his well deserved time off. Thank you Natalie (and Daniel, when he is not chasing waves) for spending Sundays with me.

I'm looking forward to seeing you on May 17th, at the Share The Care party. I've invited all of you to come and learn about the care model, Share The Care, which Peggy Chun successfully used for her care. Don't be afraid to come and think you will have to be committed. This party is for you to learn about this care model and see if this is something you would like to participate in. As time goes on, my care will need an expansion of helpers and every little bit counts. Thank you Janice Churma for helping to coordinate the Share The Care party.

I'm going to try to post on a daily basis what I'm up to. Some days are better than others, but I'm taking everything day by day. Also, look for our monthly Medical Reports which my wonderful husband Jan, has been writing and sending out to our family members. That way, you will always know what's happening health wise.

Aloha for now!

You're Invited! Vi's Share the Care Kick-off Potluck

2009-05-01T11:22:00.000-07:00

Aloha all! Please join us on Sunday, May 17th, 1:30pm to 4ish, for "Vi's Share the Care Kick-off Potluck"! This first gathering, which will be at Vi & Jan's house on Tantalus, will be an opportunity to understand the concept of "Share the Care" and learn about Vi's Share the Care group, "Violet's Web".

Please join us to support and nurture Vi and her family as she faces the challenges of living with ALS. This first meeting is simply about connecting with Vi and the family, understanding what "Violet's Web" is all about, and learning how YOU can help.

Please feel free to bring a light pupu or dessert. Also BYOB!

Please RSVP to Janice Churma at 255-3122 or by email itsdonehi@hotmail.com by May 8th. Let us know if you can attend and what munchies you might be bringing. Also, let us know if you know of someone that would be interested in attending and/or being a part of "Violet's Web". Help us spread the word!

If you have questions, please contact Janice at itsdonehi@hotmail.com or Kimi Chun at kimi@peggychun.com

Directions & Parking Info:

Directions To Vi & Jan’s House at 4059A Round Top Drive
Vi’s Home Phone: 945-9357
Vi’s Cell: 256-9607

Coming From West -
Take the H1-E Freeway
Take the Punahou Exit, Exit 23
Turn left onto Punahou Street (Cross freeway)
Take your next left onto Wilder Avenue (Go 3 blocks)
Turn right on Makiki Street (Go about .3 miles, pass through Nehoa Street)
Stay to the right and follow Makiki Street, past Triangle Park on your left, until you see the Round Top Drive sign pointing left.
Turn left onto Round Top Drive
Follow Round Top Drive to near the top (along the way you will pass the popular tourist look-out point and Ualakaa Park)
After approximately 4.5 miles, the road will come to a seemingly level area. To the left, you will see a large parking area. Directly across from that parking area is a stone mailbox holder. You will see 3 addresses, including 4059A, which is Vi’s house.

Coming From East
Take the H1-W
Take the Wilder Avenue Exit, Exit 24A
Stay straight to go onto Wilder Avenue (go about 1 mile)
Turn right on Makiki Street (Go about .3 miles, pass through Nehoa Street)
Stay to the right and follow Makiki Street, past Triangle Park on your left, until you see the Round Top Drive sign pointing left.
Turn left onto Round Top Drive
Follow Round Top Drive to near the top (along the way you will pass the popular tourist look-out point and Ualakaa park)
After approximately 4.5 miles, the road will come to a seemingly level area. To the left, you will see a large parking area. Directly across from that parking area is a stone mailbox holder. You will see 3 addresses, including 4059A, which is Vi’s house.

Parking Instructions:
Please park in the parking lot on the left of Round Top Drive, below the driveway across from the mailbox. There will be people shuttling guests up and down the driveway (or you can walk/run). If that lot is full, please park along the road.

Jones-Medusky Refusing to Give Up in the Face of ALS

2009-04-30T13:22:00.000-07:00

For those of you who may have missed it, here is the article that ran in the Honolulu Advertiser on October 3, 2008 along with a great photo from the Kualoa race.

Jones-Medusky refusing to give up in face of ALS
Veteran endurance runner highlights race to raise awareness

By Michael Tsai
Advertiser Staff Writer

In considering Vi Jones-Medusky's latest adventure, it is perhaps helpful to ponder the potential outcomes when the irresistible meets the immovable. For Jones-Medusky, an accomplished ultra-distance runner and triathlete from Hawai'i who is battling Lou Gehrig's disease, the answer lies not in a single cataclysmic moment, but in the dogged accumulation of days in which the inevitable victory of the disease is nudged to its heels, however temporarily, by joyful determination. Jones-Medusky will be the athlete-of-honor at Vi's Adventure Trek and Run, a 4-mile off-road race scheduled for Oct. 18 at Kualoa Ranch.

Jones-Medusky, who will participate in a wheelchair, is hosting the event in conjunction with the Muscular Dystrophy Association's ALS Division and the Hawaiian Ultra Running Team to raise awareness of amyotrophic lateral sclerosis, a relatively rare but fatal disease that affects nerve cells in the brain and spinal cord. Proceeds from the event will be donated to the MDA-ALS division to support local families affected by the disease.

"Running has always been a passion for me and I've always wanted to give back," Jones-Medusky said. "I want more people in our community to be aware of ALS because there are families here who are really in need." The disease affects roughly 1 out of every 50,000 people nationwide. There are 80 to 100 known cases in Hawai'i, according to MDA.

"ALS research isn't funded by the big pharmaceutical companies because it doesn't affect enough people," Jones-Medusky said. "It's funded by people like you and me." Mother of professional surfers Malia, Mikala and Daniel Jones, Jones-Medusky has long been a familiar face in the local racing scene.

Her seemingly endless list of athletic achievements includes marathons in New York, Portland, Maui and Honolulu, three Ironman triathlons (California, Canada and New Zealand) and ultra-marathons like the Tantalus Triple Trek and the Haleakala Run to the Sun.

It was around the time of the 2003 New York Marathon that Jones-Medusky got the first inkling that something was amiss with her body. She had a lingering pain in her calf and, though she hadn't realized it, she had finished the marathon without the use of her toes.

For reasons yet to be established, ALS demonstrates perverse preference for athletes. It also is notoriously difficult to diagnose; only after everything else is ruled out can a firm determination be made.

"During the diagnostic process, her doctors were actually hoping she had a spinal cord problem to explain why her muscles were wasting away," said Jones-Medusky's husband, Jan Medusky. After six months and a battery of tests, Jones-Medusky's doctor arrived at an ALS diagnosis-by-exclusion. Jones-Medusky, a nurse at Kaiser, knew enough about the disease to understand that her superb conditioning would eventually be undone as motor neurons degenerated to the point where they could no longer initiate muscle movement.

The average life span for a person with ALS has been estimated anywhere from 1 1/2 to 5 years, though the known extremes range from a few months to more than 20 years. Jones-Medusky has been aware of her disease for 4 1/2 years.

Still, the woman whose ability to endure to the end made her a respected ultra-athlete has proved stubbornly indifferent to other people's timetables. No longer able to complete the 37-mile Haleakala Run to the Sun by herself, she continued to compete as a member of a relay team. Unable to stand unassisted, she still swims in the ocean whenever she can.

And no longer capable of maintaining the rigorous training schedule that consumed so much of her days and weeks, she recruited a few of her fellow nurses to join her in earning a master's degree in nursing.

"I don't think I'll ever sit still," Jones-Medusky says. "Even when I'm in my wheelchair, my mind is moving." Dealing with ALS in her usual positive way, Jones-Medusky has become a important figure in the local ALS community.

"Vi is energetic, always upbeat, a constant source of inspiration for our staff and for families (of people with ALS)," said MDA healthcare services coordinator Jennifer Li. "With her, there's this exuberant, overwhelming outpouring of joy always. She's funny and witty and just fun to be around."

Still, Jones-Medusky has no illusions about her prognosis. The disease has progressed to her arms and hands as well as her lower body. She needs help to go to the bathroom. She can't turn over in bed. She requires some sort of assistance 24 hours a day.

Like many other ALS families, Jones-Medusky and her husband have benefitted from the resources, information and support available through MDA and, in particular, the ALS support group founded by Divina Robillard. Though the group is small, Jan Medusky said the mutual support it provides is invaluable to people with ALS, as well as their caregivers and family.

Jones-Medusky said she hopes to work with MDA to organize a road race in May — ALS Month — to benefit ALS research and to support people with the disease. If that's successful, she hopes to bring the race to other states.

"As the disease progresses, it gets very expensive," Jones-Medusky said. "I'm lucky, but there are other families who are dealing with the disease that need help. As a community, we need to be more aware of what this disease is and what it does."

Welcome to Vi's Blog!

2009-04-29T17:15:00.000-07:00

You are looking at the first posting on the "Violet's Web" Blog! This blog will be used to keep everyone updated on Vi. We are in the process of setting up a "Share the Care" group for Vi. We will be posting the information soon. Until then, if you would like to learn more about "Share the Care", check out the website www.sharethecare.org