Oh Brooksea! I am always so grateful when I see your posts! I am going to copy the email that I sent to friends and distant relatives to share Wayne's diagnosed and the gifts that ALS has brought into our lives. I am a very open person so it has not been difficult for me to tell our story truthfully in all of it's up's and down's. In less than one month, we have gone from a very comfortable upper middle class life to receiving a small weekly short term disability check. Unfortunately we lost most of our life savings in a business that failed when the economy failed and our retirement and investments disappeared when Wall Street collapsed. So here we are-basically penniless but rich beyond comprehension. :] We have the GIFT of living and loving in the present moments! We just returned from a three week bucket list road trip [I charged it on my credit card] My Son and his wife and our 3 year old Grandson met us in Montana and had a Condo for us to stay in! My Daughter and her fiance rented a Houseboat for 4 days on Trinity Lake and bought all the food and planned everything! A neighbor sent us a $100.00 debit card to us on our trip! Two of my sisters pay $200.00/month towards Wayne's medicine! Minnesota ALS Organization can not help us financially but they have been LIFE SAVERS for phone and email support! Another sister paid to have our fur people boarded for three weeks so we could leave! Yesterday I got a card in the mail from a unknown local person with $50.00 in it! We have been the recipients of a blessing and a laying on of the hands from a local church that we do not belong to-We are on Prayer lists all over the World-We received blessed holy water and soil from a Catholic spot that is known for miraculous healings and we are not Catholic-Someone paid for our Son's first month of school lunches-every single day we are blessed. I do get soooooo frustrated having to fight tooth and nail with all the beauracracy ie SSDI, VA etc to get what Wayne has paid for... It is such a journey and we have so much to be grateful for! My husband struggles with being on the receiving end of the gifts and refuses to ask for help but I just gently remind him that it is his lesson to learn and that it is always a blessing to give AND to receive :] Here is a copy of my email
Dear Friends, Now that we have had the opportunity to share the changes in our lives with all of our immediate family, it is time to share with you. Wayne has been diagnosed with Bulbar Onset ALS on 13 July 2009. Some of you may know this as Lou Gehrig's Disease. Please read my note, include us in your prayers and pray for a miracle.
My sweet "Web" has been diagnosed with Bulbar Onset ALS. [A simple and generalized description] Amyotrophic Lateral Sclerosis (ALS), or Lou Gehrig’s Disease, is a progressive neurodegenerative disease that causes its victims to become completely paralyzed, gradually stealing their ability to move any of their limbs. The disease affects motor neurons in the brain and spinal cord. When the motor neurons die, a patient’s muscles waste away. The patient is robbed of the ability to walk, speak, eat, and eventually breathe. Upon diagnosis patients are given only two to five years to live. There is no cure for ALS. There are currently 35,000 victims of ALS living in the USA. A victim of ALS dies every 90 minutes. Every 90 minutes someone is newly diagnosised with ALS. I respectfully request that you join hands and hearts with Web, Matthew and I as we live the present moments with joy on this journey of life!. If you believe in a higher power, we respectfully and with sincere appreciation request that you pray for a cure for the 35,000 ALS victims currently alive in the USA and the countless others in the World. Please do it this moment. I absolutely believe in Miracles, fairy dust, ruby red slippers [I actually own a pair and a crown in the shape of the Golden Gate Bridge Thanks to Brent!] and that the Universe unfolds as it should! ALS is not robbing us of our lives. ALS has given us our lives. The gift of ALS for us is that we have been given the opportunity to soulfully and completely understand that all any of us have is this very moment. What has happened in the Past or what may happen in the Future is so unimportant. That is our gift to you. LIVE EACH MOMENT WITH JOY! We have all been soul blessed. This moment in time is for healing for all of us.
I also respectfully request that each of you become the voice, arms and legs for the victims of ALS by becoming advocates for the victims of ALS. Join your local Chapter or Association for Muscular Dystrophy and ALS. Organize a Community project or join a ALS Walk to raise FUNDS for RESEARCH. Phone, write or email your Politicians, the Leaders in your Community and LOUDLY DEMAND because you have a voice that funds be made available for research and for a cure for this horrific disease. Join online ALS MDA forums. DEMAND reform and accountability for health care and for Social Security! Are you aware that the ONLY medication FDA approved and available since 1996 is Rilutek, it prolongs life by 3 months and it costs $1000/month! Do you know that even though Web is immediately approved for Social Security Disability that we still need to wait for 5 months to receive payments of HIS MONEY and that there are no back payments for the waiting time...Doesn't that make you feel outraged?! Here is a passage that says it like it is,
"Because people die from this disease, because there is no cure, because there is no long term life extending treatment, there are no survivors. Let me repeat that, no one survives ALS. The myth continues because there are no survivors to shout from the rooftops how horrible this disease is, and why we need to rally around, raise money, and find a stinking cure. We need to make aware that this disease can strike anyone, anywhere, at anytime in their life. We need to make aware that this disease is not just “something” named after baseball great Lou Gehrig. We need to make aware that this disease strikes real people; moms, dads, grandparents, sisters, brothers, aunts, uncles, nephews, nieces, baseball players, boxers, football players, soccer players, golfers and veterans. "
I found the National Institutes of Health spends billions of dollars for research -- the vast majority targeting preventable, treatable and non-life threatening diseases. The sample below provides perspective on how much money the NIH was willing to spend in 2008 to prevent each death from these diseases: HIV/AIDS, $198,263; substance abuse, $162,353; sexually transmitted diseases, $40,833; ALS, $7,167. I ask you to look carefully at these statistics and question why there is not significant funding for ALS. The truth is that at this point, the Drug Companies will not make MONEY off of ALS victims. Oh, it is so true that money is the root of all evil! Please assist me in the process of increasing public awareness for this disease.
If hearing this moves you to contact us, we would LOVE to hear from you. Not talking about it doesn't make it go away. Please do not feel uncomfortable. There are no words that make it better but hearing "I'm sorry and what can I do to help" is such a comfort. We need all the support, encouragement and help that anyone can offer! :]
Today the sun is shining in the brilliant blue sky in South Dakota! Today my husband went fishing and before he left, he kissed me and said "I love you". Today we are soul blessed and fortunate. Life is good.
With Love,
Kay Marie
Be the change you wish to see in the world.
