I forgot I had an account here and just remembered. Which is terrible because this is a great place to share information with other ataxians- a rare opportunity as we all know!
I have a few new items.
My old neurologist had suggested that I take 10-20 mg of Adderall as needed to help me with fatigue. Sitting around speeds up my slow decline, but it’s so hard to get up on hard days. Years ago I had all these visions of becoming one of those scab-picking characters from Breaking Bad and I was like NO THANKS. This time I said okay I’ll try it…WOW what a difference!
I have NOT had any desire to take more than my recommended dose. In fact, I have never taken the 20 mg. I take 5-10 mg a day as needed. All of a sudden I can take my son to the park again, clean the house when my husband is at work, mow the lawn by myself even! I feel like I did 5-10 years ago. If you have a problem with fatigue you might want to ask your doctor about it.
Changed Back to Old Neurologist
I work really hard, with exercise and clean living, to stay functional. Unfortunately, I have found that you cannot do your best on neurological exams, because some of them hold that against you and don’t want to keep treating you for an ataxia. I had a long argument from a young doctor who “specializes” in ataxias because he thought that the 200+ year history of ataxia symptoms in my dad’s family didn’t have anything to do with my symptoms, and further, that since I can still walk and talk, that I didn’t have a problem at all. I went back to my old doctor, who is a nice and experienced man.
Gave Up Work/School
I was intending to go back to work after I got my Master’s degree, but it turns out that being a mom has been kind of devastating for my health. I have had to face reality, that it’s between working/finishing a PhD or taking care of my child and husband now. I have to take care of my family. I also believe that if I returned to work my symptoms would worsen. I had to use a cane when I worked in 2010. I can walk without one now.
That’s about it. Thanks for reading. I’ll try to be a better ataxia community member here this time!