AWARENESS, AWARENESS, ALS AWARENESS

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

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."

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

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

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