Never a dull moment!

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,

VI

A Big Mahalo!

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

vi

Photos from Vi's Adventure Trek and Run!

Thank you to everyone for making today such a success!

Vi's First Blog Back

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

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!

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

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

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!

Picnic photo

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!!!

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!

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!!!!!

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

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

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,

Vi

Blog 30: Sunday, Sunday, Sunday!

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!

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

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!

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!

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..

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!

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