I usually don’t write posts on here but I do like to share my thoughts to you about your exercise program. I will never say to you to do your exercise no matter what happens to you, or do exercises that will place you in your bed until you believe in “the bed people.” I would like to share my thoughts to you about being fatigued and your exercising program. I am sure being fatigued is not expressed to you with a true meaning that is accepted with SCA people as we are. I will say “being dead-tired” for days out is more of what we think. I read that one person can brush their hair or swim and become dead-tired or pay for it later. I can take a shower for more than five minutes and after “kiss my pillows” for two or three hours. That’s describes Us as being “dead-tired” more so than being fatigued.
I am able to walk for some time right now, I am able to work-out with my “senor people” who I love, and I can do some push-ups with military people only once a year. What I am getting at is that I do what I can do to exercise this body so I can keep the weight off and other illnesses that come with the extra weight that we may not need which may place us in the dead-tired zone eventually. I know that you are not always fatigued all the time. We have “episodes” we experience every day that can be almost anything and having loss of memory doesn’t make going to the Neurologist a prosperous event.
I will say that the continuing effort to exercise our bodies is a must but how we continue only you know that answer not some expert who may know but really! We want to stay alive not “dead-tired.” We have to fight this battle until there is No fight in Us left!
Its great to hear someone say it like it is and not tell us that we have to exercise no matter what. I am just coming out of a bad attack that was brought on by doing exercise because I felt lazy only doing a small amout.
Its a lovely feeling not to have a guilt trip put on my for not training enough.
I want people to understand that only you know you and those doctors are experimenting with you. This dysfunction to the brain has only been around for a short while not long like other illnesses. I encourage you to eat better, make better choices for yourself, and do as much research as possible to enrich your mind so when you see the Neurologist or any other doctor you know what you need to do to further your health. I went to the Neurologist and the end of January. I was on only on three medications and one of them was high blood pressure medicine which I only took once a day. I told one of the doctor’s and she told me to take it three times a day because I was supposed to. They also prescribed me one more medicine for the spasms I am having. The medicine keeps me tired first month. Well, the doctor forgotten about telling me to up my blood pressure medicine to three times a day. I took all medicines as prescribed and after several days of medicine, I was not able to move. I did manage to call the doctor and research the symptoms and realized I was over dosed. So I stop taking all of the drugs and regained my strength back. So by time the doctor called back I told her what was wrong with me and what I did to remedy my overdose. All I can say is that doctors don’t know what SCA people go through. Especially, if you have the progressive form of SCA like me.
Debra White said:
Hi Morlando,
Its great to hear someone say it like it is and not tell us that we have to exercise no matter what. I am just coming out of a bad attack that was brought on by doing exercise because I felt lazy only doing a small amout.
Its a lovely feeling not to have a guilt trip put on my for not training enough.
Vitamin B6 deficiency can result in neuropathies and increases in pain .... near the junction with the stomach due to chronic gastroesophageal reflux. .... A sizable fraction of individuals who have gluten ataxia have signs of GSE (either ... and malabsorption of essential fattyacids can cause depression and chronic fatigue.
Hi Debra - I'm working with a physical therapist and I'm finding out that exercising is good to keep our strength and health but with ataxia it matters what kind of exercises you do in addition. I've found personally that this works. It's not perfect but I'm tripping less and able to do things I couldn't do before like having a conversation with someone next to me while walking and turning my head to look at them; also. not looking at the ground while I'm walking. My occupational therapist found my eyes were affected and with the exercises that I've been doing for that my eyes have improved. They tell me this is also helping me to walk better.
Maybe doing the right exercises for a short period of time would help.
Debra White said:
Hi Morlando,
Its great to hear someone say it like it is and not tell us that we have to exercise no matter what. I am just coming out of a bad attack that was brought on by doing exercise because I felt lazy only doing a small amout.
Its a lovely feeling not to have a guilt trip put on my for not training enough.