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