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I go to Barrow and have never experienced that level of clinic. We have clinics at Mayo, the VA and 2 other hospitals and none do them like that. That would be more exhausting than it is now. I was in a clinical trial and expanded access for 5 years.
Clinic visits are to evaluate progression and aid the patient and family in ways that can help them live with a better quality off life. . It also can help lengthen life expectancy by getting equipment ordered before it’s needed. That may stop falls or help get nutrition into a patient or hello them sleep better.
It also helps the family and friends. I want my family to know that I’m taking the best care I can to be able to enjoy THEIR lives while I can.
I would hate to be resigned to my fate without enjoying whatever I can, each and every day. That would be a hard life to live.
MemberMay 26, 2022 at 9:29 pm in reply to: A cure and hope for ALS (also wanting to know about treating excess saliva)
I hate the saliva issue. I take atropine by itself now because the hyoscyamine affects the whole body. I have a neurogenic bladder and using hyo created a constant urge feeling.
I graduated to the big bottles of atropine. I get dry mouth all the time and it tastes like desert after sleeping with the bipap. The only place I get Botox is in my bladder.
I am on a trial drug that failed phase 3. Only 40ish of us tolerated the max dose. It helped me and I’m the only one still taking it. That’s going to stop July 31 since they didn’t make more.
The will beat cure. When, who knows. Not during my lifetime. I just passed my 8th year. There is so much out there and people are looking everywhere for a cure. Please be careful with some of the roadside cures. They may make one ineligible for a clinical trial that may help.
The has been a lot of growth and a lot of disappointment. Dinner things may just need a tweak whereas others need to be flushed.
I wish you well. I’m sorry you have the issues you are having with doctors in your area.