|
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: |
Quote:
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
Quote:
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:
|
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.
|
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: |
Hi!
Quote:
I've only been diagnosed with SCA but have decided to take each day as it comes. I don't know how else to handle it. I've noticed lately that I am getting a little more dizzy. I wonder if that goes with fatigue? I've had real bad fatigue for a month or two. I wonder if fatigue goes along with SCA? My legs are getting a little more unstable & I've noticed (this is going to sound silly) my fingers dropping when I don't want them too. Let me explain that. I'm at the computer quite a lot & when I'm typing I notice my fingers just falling & hittting keys before they're supposed to. I guess this is another thing to tell the neuro next month. Well, I better hit the hay. I'm really tired & morning comes wayyyyyyy to early anymore. It's been nice meeting you & I'm glad there's more than myself with this! Nite! Deb |
Hi Marie, :D
Welcome to the club! I was just diagnosed 4 years ago. I have no idea of what to expect from this. None at all. So, I'm just taking things day by day. I have a few questions to ask my neurologist when I see him this month. Does 'finger drop' go along with this? That sounds like a stupid term but it's one I made up and describes the problem. I'll be typing on the computer and all of a sudden a finger drops. This happens quite frequently and I usually hit the wrong key. Very aggravating!! I want to also ask if fatigue goes along with this. I've had to lay down in the afternoon (almost every afternoon) but these past few months have been terrible! I do know that cognitive issues go with this. So do urinary and bowel issues. Well, I can't talk long today. I'm very tired and I also have to start writing a chapter for a book I'm writing. I find hobbies and other things to do help. It helps you keep your mind off yourself. It was great meeting you and it's fantastic that there are a few of us with CSA that can talk to each other here! Welcome to our little group! :grouphug: Deb :D |
Quote:
Some of the things to be expected with ataxia (based on ataxia type and severeness): Loss of balance, loss of appetite causing extreme weight loss, loss of muscle strength, loss of flexibility, degradation of eyesight, heightened emotions, personality change, slurred speech, dizziness, clumsiness, cramps (often severe), loss of gait, all food is now a choking hazard (many sufferers swallow into the wrong tube filling the lungs often causing pneumonia which is often the cause of death), alcohol and tobacco make many ataxia symptoms worse, walking gets worse sending sufferers to cane, then walker, wheel chair, scooter, etc... Things in everyday life that are affected by ataxia: I can no longer jog, run or walk without holding on to something (treadmill !), I no longer drive, walking in winter is sooo hard (ice is a drag), no more sports or activities exercising, getting dressed is getting harder, no booze or drugs or cigs, no more work/job/money, anything requiring finesse, dexterity, coordination, timing, balance, strength and flexibility is hard or impossible. The list is long, ataxia is progressive, meaning most symptoms intensify. Washing/drying dishes has left me with considerably less glasses and plates. There really is no + side to ataxia. But... even with no cure or treatments, us ataxia patients experience less physical pain then many of the members of this site. Ataxia isn't a devastatingly quick disease (I was diagnosed with SCA-2 in 2002 and am still walking unaided, barely). Working with heights scares me even though I never have had a fear of heights, but I know I'd fall off a ladder, roof, tower....many ataxia victims have died from a fall and head bump. I have discovered a few things that assist me daily. I'll post that later-on, I need a break from typing. |
Hi everyone,
Right now I'm very tired so this is going to be short. I'm feeling disgusted with myself right now. :mad: I was at the neurologist's office today and forgot to ask if fatigue, "finger drop" (as I call it) and cognitive issues come along with this. My eyes are very tired now and couldn't read all the information Moonspell had. I'll get to it. I usually write my questions along with what's been happening down for the doctor. I forgot to today and could kick myself! But I want to know. Deb :confused: |
Quote:
Fatigue is absolutely a very common symptom. Which makes sleep very important- if I sleep less than 6.5 hours, ALL symptoms get worse. I aim for 7.5-9 hours of sleep per night. I usually get 7-8 hours. For me, the most important tactics I have used to slow ataxia are(in no order): - sleep enough - quit drinking and smoking - get and stay in the best physical shape your current situation allows (treadmill, swimming, light weights, crunches, push-ups...) - develop and keep a strong, positive mental attitude. Not doing so seems to allow for depression to take route; and ataxia is bad enough, there is no need to fight through depression as well - eat and supplement healthy foods and natural herbs, vitamins....etc. When grocery shopping, I no longer buy processed "food", but I garden and I have friends that hunt big game, so I am a very healthy man, excluding ataxia. I haven't even had a cold or sniffle in 10 years. - I don't now, nor never have, used pharmaceutical crap. For me, natural medicine works best and causes only very minor side-reactions. I don't even use aspirin, tylenol, Rolaids (or any anti-heartburn meds). - for the last 10 months I have started making, preparing and eating fermented foods, such as: sauerkraut, kefir, kombucha, many lacto-bacillac fermented, jarred foods like carrots. This stuff does nothing to combat ataxia symptoms, but fermented foods contribute to over-all health. They say healing begins in the gut, so all the probiotics in fermented food are so good for you. Sandor Ellix Katz is a ferment expert and has written books on fermenting showing recipes, health benefits, and the ease and inexpense of fermenting. Or, go to youtube.com to watch shows that teach how easy, cheap, healthy and labor-ease fermenting is. |
Hi Moonspell,
You sound like you've really done your homework by reseaching SCA! I'll try to follow your lead (the key word here is 'try'. What you experience when you're using your hands is what I have dubbed "finger drop." It frustrates me to no end as I'm on the computer quite a bit. My debut picture book is just about ready to come out. The illustrator has a few things to do on it yet. I run an online critique group, gave up reviewing books to give myself some time for myself. I'm also doing things for 2 book publishers. I enjoy all this. I've found that keeping myself busy like this helps me keep my mind off this SCA. Oh, I also have my hobbies and they sure help in the same way. When the fatigue sets in (which is practically everyday) I hit the bed and lay down. Most of the foods you mentioned, I've never heard of! I've never heard of carrots in a jar, either. Can you use them on a salad? Yes, I too am eating organic, most of the time. There are times when my budget just won't allow it as organic foods are pricey! I guess CA has the same problem the USA has. Healthy foods cost much more than processed stuff. I lead the MS Support Group in my town & they have to be on a non-processed diet as well. They're up against it, too. It's just not fair. I'll have to look up the author you mentioned and download a book! As for growing my own food, I have a bit of a problem. I'm in an apartment complex (like townhouses) and have a 4 foot by 4 foot area for planting. I have a nice size yard though! A couple of years ago, I bought a couple of packets of seeds (green onions, radishes and marigolds to keep the rabbits out) and since I was still new here, I asked the manager if I could plant the seeds along the fence of the whole yard. He blew his top! I was told under no uncertain terms that I could only plant in my planting area. Oh, that man!! Well, I'm going to try tomatoes in my little 4' by 4' area. I'm going to try to use pots. I know I'll have to get those metal tomato trellises for it them. It's in the lease. I hope I don't get yelled at again. It seems every spring when I try to do something out there, I get yelled at. I take that back. It's been every year except for last year. I was so disgusted, I didn't try to plant anything. We do have room in here for a community garden but he won't allow it. This apartment manager is a piece of work, I'll tell you. Well, I'm tiring out fast here so I'll close here. Deb |
Quote:
Hi, I didn't do much homework- My Mom, Grandpa and many, many far-off relatives, and myself; all have ataxia- I have seen ataxia up-close. The jarred carrots I made turned out well. I grated enough carrots to pack tightly a mason jar. I just added 1.5 tbsp of salt to 1 liter of filtered water, to make the brine. Stuff grated carrots in 1 liter mason jar, add brine, and wait 5 weeks. Keep the jar out of sunlight and in a warm place. Keep carrots under the brine. Check every few days to "burp" the jar (open the lid to dissipate the CO2 or the jar may explode due to pressure formed during the ferment). You don't have to use carrots- any veg should work (like cucumbers, beets, etc.) I like to eat them right out of the jar but they do work on salads. I wish I had kidztale's job....I'd love to edit/review books. I am now 42, but I have had a book-on-the-go since I was 7 (the library was in a smalltown so I had to wait until I was 7). Reading/music are my current hobbies. |
Hey Moonspell,
It's never too late for anyone in the writing world. People always want reviewers for their books that just came out. Just join LinkedIn.com, Facebook, Goodreads or Librarything. All you have to do is say once that you'll be happy to review a children's or adult's book (or either) & people come out of the woodwork at you! You meet lots of great people (the authors) & form friendships with them. For editing it's a little of the same procedure. In any writing group you're in on Facebook (there are a lot of them) you just list yourself in the docs part of the group. Well, try it & you'll see what I'm talking about. The best thing besides meeting great people all over the world? You can go at your on pace in reviewing. It's pretty flexible in editing too, but the author might have a deadline. Unfortunately, those things do happen. Give it a try! Deb (kidztales) |
Disease Progression
In less than a year my ex husband's symptoms have progressed very quickly, although his formal diagnosis didn't come till about 9 months after he first realized something was wrong. After reading the types I think he has SCA type 1 he has the muscle wasting, tremors and even though he is 52 now, I think he was showing signs almost 10 years ago. Initially we though he was the only one but then his mom called, not knowing what was going on with him, and told him about how his brother (who lives in texas and is 3 years older than he is) is falling all the time, he has horrible tremors etc. Thats when we told our neuro and he immediately diagnosed him with SCA. On the MRI the cerebellum is atrophied and his 4th ventricle is enlarged, much too large for someone his age. At the rate he is going he will be wheelchair bound in another 6 months, has anyone else experience such a quick progression or know someone else who has?
|
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: |
| All times are GMT -5. The time now is 05:41 AM. |
Powered by vBulletin • Copyright ©2000 - 2025, Jelsoft Enterprises Ltd.
vBulletin Optimisation provided by
vB Optimise (Lite) -
vBulletin Mods & Addons Copyright © 2025 DragonByte Technologies Ltd.