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Spinocerebellar Ataxia
I am 62 yrs old & was diagnosed with Spinocerebellar Ataxia 15 years ago. It is a progressive disease and rare, no treatment for it.
Anyone out there dealing with this debilitating disease? My knees are going on me from locking them trying to maintain some stability. I use a walker full time. Is there any help out there? I have no one that can even remotely relate to what I am dealing with on a daily basis. Please would like to hear from one. |
Hello Rita,
Welcome to the NeuroTalk Support Groups. :Wave-Hello: There are some older posts here in the forums from people who have been diagnosed with spinocerebellar ataxia. If you use the search feature that I post below you can type in keywords and it will bring up those threads and posts. NeuroTalk Forum Search Feature You could maybe start a new thread in either Movement Disorders Forum or in General Health Conditions and Rare Disorders Forum I would make the title "Spinocerebellar Ataxia" the same as you did here and that way if people are searching for this particular condition the thread will come up in the search more easily. Is there any family history of ataxia or have you had any genetic testing to determine a particular "Type" of spinocerebellar ataxia that you could have (as some are hereditary as you would know). Ataxia causes Ataxia resources and FAQs From the National Ataxia Foundation. http://www.ninds.nih.gov/disorders/ataxia/ataxia.htm NINDS Ataxias and Cerebellar or Spinocerebellar Degeneration Information Page take care |
Welcome!
Hi Rita,
Welcome to NeuroTalk. :D Your post touches my heart. I am so sorry you are having to cope with this huge challenge. I am also sorry you seem to be feeling a bit alone with this challenge. It's fantastic you are reaching out!:D Please join us on any of the forums here. We share and laugh with one another on many different forums where we share music, hobbies, movies, jokes, word games, pictures of pets and wildlife, and more! :D I hope to see you around the site. :hug: DejaVu |
Nice to meet you!!
:Wave-Hello: Hello and welcome, happy to see you have come to be with us, it a great place to be. We have a great number and caring fellow members here, where you have find a supportive and relaxing place. Have fun looking into the different forums. Our shoulders are here for support in many ways. Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you. :smileypray: Darlene :hug: |
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I'm Deb and I've been diagnosed with Spino Cerebella about 4 years ago. Oh, I forgot to say that I'm 64 years old. I was mis-diagnosed for 30+ years with Multiple Sclerosis. I changed neurologists about 4 years ago. The neurologist I'm seeing now is much better than the previous one! His office suspected that I didn't have MS right away. They put me through a battery of tests (which all came back negative) and sent me to a hospital in Pittsburgh, PA. My knees are going out on me too. In fact, I've had either close calls or have fallen & hit the floor 6 times since August. I have absolutely no idea of what to expect with this. :confused: Since you've had it longer than me, maybe you can enlighten me a bit? Right now, I'm taking it one day at a time. I do write for children, edit and proofread. I intend to keep this up as long as I can. That's the plan, anyway! It's great to finally find someone with the same thing I do! I hope you get back to me. Deb :) |
me too
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I am from Canada, am 42 yrs/old and I was diagnosed with SCA-2 in 2001. My great grandmother, my Grandfather, many of his siblings, and my Mother, myself and many cousins all have SCA-2, which is genetic. I took Mom to China in 2006 for stem cells. My Mom seemed improved, for a year or so. Now she slurs terribly and uses a walker full time and the ataxia has harmed her immune and digestive systems. She gets every bug going around and now weighs under 85 lbs. The stem cells I had seemed to give me a very minor improvement, for 4-6 months. Mom and I take Co-Q10 or CoQH every day. It seems to help though I have relatives that had no benefit from Co-Q10. I was quite lucky: I switched to a gluten-free diet. I also quit eating processed 'food'. I quit alcohol, smoking and severely reduced sugar intake. I am now very health conscious. I have difficulties walking, but on my treadmill I have a place to grip with my hands. I am only able to walk on the treadmill, I can no longer jog or run. Currently I walk 40 minutes at 3.7-4.6 mph. When I was 38 I was much more active and was able to run 1 mile in 6:51(on the treadmill) !!! What I am saying is that trying to stay active, eating healthy and staying mentally positive has been the only thing that makes me think I am controlling ataxia. I aimed to be in the best, healthiest condition possible and it didn't cure me but my doctors said that besides having ataxia, I am in great shape. But last July, I tripped on my dog's leash, landing hard on the pavement. I spent 3 months on the couch in pain. In all, it took 6 months to return to walking pain-free. Since then, my ataxia has really been devastating. My doctor prescribed marijuana to control night cramps, to help sleep, to combat depression and to boost my appetite. The marijuana does nothing for speech, gait, balance or strength, but it is extraordinary for the symptoms that it was prescribed to treat. My advice is to eat healthy, avoid aspartame, MSG, fluoride and all neuro-toxins. Exercise as much as possible. For me, if I get less than 6.5 hours of sleep, my balance is just terrible. So sleep is very important. But it is impossible to sleep through a bout of night cramps. The marijuana is a miracle, as far as the helping me sleep 6 hours, getting up for a pee, then 2-3 more hours of sleep! I have never been depressed before, but last winter I was so low, not suicidal, but I was for sure thinking of it. Exercise and marijuana controls my depression. Depression is mentally one of the worst things for ataxia, as staying mentally positive is key. I am like many ataxia sufferers. It is so nice to talk to someone else with the same, or similar health issues. I'd love to hear from you and any other people dealing with ataxia. Jay |
Hi Jay,
I'm glad I'm not the only one in this world with Spino Cerebella Ataxia. I'm Deb and I'm 64 years old. I was mis-diagnosed in the early 1980's with MS. I've lived as an MSer for 30+ years, even taking a weekly MS injection called Avonex. So far, I'm just learning about SCA. How the doctor found this is simple. I switched neurologists to a much better neuro. After seeing me a few times, they ran all kinds of tests on me here in my hometown. Then, the sent me to Pittsburgh, Pennsylvania (I'm in the USA) for conformation.
I'm still in my MS group. In fact we all got to be friends. I did tell the group when I was diagnosed with SCA (about 4 years ago), asked them if I could stay in the group now that I didn't have MS and they said yes. Whew! I really didn't want to leave my friends but was prepared to do so if they didn't want a non-MSer there. I've noticed since I was diagnosed with this that I've gone through everything that my MS friends have. I wonder if CSA is a disease that mimics MS to a point? I'll have to ask my neuro when I see him next month. How do you know if you have SCA-2 or what? I guess this is something else to ask the doctor. I can walk about 6 minutes without having to sit but am trying hard to improve that. I use a walker mainly but for long distances, I have a power-chair. I'm working on improving that. I sure hope I can! I bought myself a walking DVD to follow, and with the constant chatter out of the instructor on it, I find it fun to do! I have to admit that I can't do it everyday. Maybe that will change in the future too. I don't know. All I can do is keep on trying. I have know idea what to expect from this disease so I'm just living from day to day. I'm trying to enjoy every day I have, too. I read a very depressing blog by a person who has this. It was very depressing. Both he and his father have it. In fact, the father died from it 4 years after being diagnosed. Can you tell me what symptoms go with CSA? Like I said, it seems that the symptoms of MS are the symptoms of this but really, I don't know. I do know I've gone through at least 3/4 of the same stuff an MSer has gone through. I do know from reading that depressing blog that incontinence, weakness and depression go along with this. What I do for my depression is going to sound really corny. You'll get a laugh out of it and I hope you do. It might make you feel better! Well, when I feel myself going down that road I put in either a Harry Potter, Celtic Thunder or a Christmas DVD. All of which I love. Oh, the movie Mama Mia helps, too. But this doesn't always help. Sometimes, it happens and I don't know it happens until I am convinced my family hates me and cry for no good reason. That kind of stuff. The DVDs don't really work then. This is usually between a doctor appointment. I'm not sure what to do at these times. My right leg has been going out on me lately so both the neuro and the orthopedic doctors have ordered MRIs. Both have abnormalities in them. Again, I'm really glad I have someone else to talk to that's in the same boat I'm in! Deb :hug: |
Hello
The symptoms I have dealt with and have witnessed my Mom and Grandpa deal with are very similar to MS...perhaps SCA isn't so painful (i don't really know).
As the disease progresses, balance, gait, speech and co-ordination gets worse. From normal walking to a walker, a scooter and eventually a wheelchair. If my house is not uncomfortably warm, I deal with cramps. I like the temperature to be 19-21C. But my body needs 23-25C. I often get night cramps. Waking from a deep sleep to deal with cramps is not a cheery thing. What is happening is a slow death of certain sections of the brain. When a part dies off, maybe the balance is affected, maybe speech. It seems to be different in each person. One thing to be aware of is personality change. Once the section of the brain controlling personality is attacked, sufferers change. Personally my sense of humor has shrunk. I am now more serious. I am way more emotional. Later on, internal functions like swallowing are hurt. Many SCA people swallow food which ends up in the lungs instead of the stomach. This can, and often does, cause pneumonia. I've heard that many SCA people die this way. I'll post here again, soon, but right now my head is shaking and won't quit. Quote:
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history of sca
Hi again,
sometimes I have to deal with mini-spasms of my head. When this happens, I often have a quick meltdown of balance/coordination issues; so I'll post here when I can manage. I am curious as to why my family and I are stuck with Ataxia...were my ancestors too frequently eating something in particular? How did this become genetic? Maybe my ancestors were starving for a certain trace element in their diet? My great-grandmother had ataxia, but back then nobody knew what ataxia was. So her family teased her because she was so clumsy. Eventually she fell off a ladder and she banged her head. She died. But she had 14 children, about 8-9 of them developed ataxia. If an ataxia sufferer has children, roughly 50% will have ataxia. Nobody knew this until I was in my twenties, which explains why I even have siblings and cousins. Knowing this info, if I do not have children, SCA in my family is done!! If test results for ataxia are negative, there is no way to develop this disease. Also, it is impossible to genetically pass-on these genes. Because I am the only member of my immediate family that has tested positive, my brothers and their kids and grandkids are safe. So I won't be fathering a brood. Though the fetus can be genetically tested for ataxia and, if testing positive, there is an extended period of time to terminate. Personally, I take joy from my nephews; no need for my own children. My ancestors are from the Austria/Germany area, which is an area with above average number of ataxia sufferers. Other "warm" areas includes parts of China, Hungary/Romania...So far I haven't came across any stories or data that would point a finger at a clue. Ill post again soon. |
New here with spinocerebellar ataxia
Hi, my name is Marie and I have been diagnosed with Spinocerebellar Ataxia within the past year. Trying to learn how to live with this disease.
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