• Aloha Frank posted an update 1 year, 10 months ago

    @noshier48 Hi Nancy. I was diagnosed with ALS last March and live near the Sparky Matsunaga Medical Clinic on the grounds of the Tripler Army Hospital. They have a Spinal/ALS department and, as a disabled veteran, I qualify for their services. Tripler Army Hospital is less than 20 miles from our home, but unfortunately due to the virus pandemic the earliest they can see me is the end of October. I have not seen a neurologist since my initial diagnosis, however I have had several video-conferences with various medical specialist who provided my wife and I with tons of information (information overload) about how to make my life more comfortable as the disease progresses. Unfortunately, in my case the disease is moving very quickly, much more so than I expected. Earlier this year I was as strong, healthy and active as I’ve been all my life with no medical issues whatsoever, so who knows why I suddenly, overnight, came down with this terrible disease. My quality of life is near zero and only gets worse with each passing day. BUT, I understand my situation, accept it and am determined to make the best of every single day I have with my loving wife Dhora. Depression is not an option. A few months ago we bought an adorable Jack Russel female puppy Dhora named Bella. This our first dog and we’re so happy we got her. She’s so loving and such a comfort to us. I read all the information I could find about riluzole and decided what little benefit it may provide is not worth the known side effects. I hope you’re doing as well as can be expected. Stay positive and keep the faith.

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