I was diagnosed with ALS 6.5 years ago. What I haven’t shared is at my first diagnosis I was told I had bulbar onset, very aggressive, and I had about 6 months to live and to go home and make my plans!
Well I walked out saying, “Wow, I thought it was going to be bad, but at least I don’t have cancer!”
“Bart & Loulou” – in Bart’s Power Wheelchair
I had the diagnosis confirmed at my first ALS clinic. Oh joy, but this time I was told that I had bulbar onset, very aggressive, but my Dr. explained, every case is unique, and if you have seen one person with ALS you have seen one person with ALS. No two cases are alike!
If you know me, you know I am a FIGHTER! I won’t quit till I beat this “thang”!
So from day one, I said, we are NOT going to come at this with sadness and negativity! We are facing this head on with Faith and Laughter! We have maintained this attitude for the past six and a half years, and will continue!
At this time, there was ONE drug Riluzole (Rilutek) for the treatment of ALS. It was supposed to increase your lifespan by up to two months, had side effects, and frankly, when I asked my neurologist if he would take it, if it were him – he said no, so, I declined taking it.
I am very blessed to have my wife Denise – the original Ninja Caregiver!!! She has single handily got me the best care possible by not taking NO for an answer! If a doctor or provider said NO, she questioned why until she got what we wanted or called another Dr. or provider until we got the service or treatment we wanted. i.e. Speech device, physical therapy, a few clinical trials, any equipment we needed, the top of the line Power Wheelchair – Permobil F5VS (thanks Mom for the vertical standing portion!!! $10,000), and now RADICAVA!!! The first drug for the treatment of ALS in over 22 years! Denise might be small in size, but she is MIGHTY! My mother, Denise’s parents, and a few more family and close friends have supported us. Thanks Y’all!!!
It was during this time I experienced several life changing events:
I just about completely lost my voice. (Was prescribed Neudexta for “Seudo Bulbar Affect” – it brought my voice back!)
I fell and broke my wrist, requiring surgery, a plate and seven screws! (Any major trauma to an ALS patient is a major setback!)
I pretty much gave up walking, and depended on my scooter, then my power wheelchair for mobility.
Then enter the first drug for the treatment of ALS in 22 years! RADICAVA!!!