I would like to hear some other peoples symptoms. I am starting to slur speech, have problems with my hands working well with doing fine movements, involuntary muscle spasms i.e. leg, arm and body jerks. I fall when I mis step or get startled, if I'm going down a tree lined street and the sun filters through the trees even when I know it's coming it always makes me flinch. I can't navigate crowds, can't even look at a ladder or basement steps, and can't walk backwards at all.
Thanks Terry
Everything is about the same for me, I do have auto immune cerabellar ataxia …
My handwriting is quite illegible; my typing is slower and filled w mistakes (which I correct); if I carry something too heavy, I can tip forward with it; I have avoided the company of many people; I no onger wear heels. But remember whatever you "give up" will be lost. You can supposedly retrain your brain. Not sure I believe this... but have been told this by numerous physios.
My speech slurs or becomes very slow especially if I get too tired or anxious. The muscles spasms tend to be at bedtimes, again if I am very tired. The visual disturbances you describe I had for several years before being diagnosed. What a pain they were. Fortunately, they have lessened as time passes. Ramps and stairs are just invitations to fall even with my walker. I am fortunate to have assistance from my husband for those particular moments, but am very dizzy all the time and falling is always a threat. I have just started on a medication for narcolepsy. I had always thought that meant you would suddenly collapse sound asleep, but in reality it has a form where I take "mini naps" and can easily be roused. This has greatly helped the foggy brain days and I seem to have less pronounced symptoms. As I said, I have just started on it, so time will tell. You might want to see a "low vision" ophthalmologist....this is a special field and not all ophthalmologists are well-versed in the field. They might be able to fit you with special lenses to help with the shadows in trees, etc.
As so often true with this disease, you are the best advocate for yourself. Nobody else knows what you are experiencing and fewer know squat about ataxia. Educate those you can and keep hanging on!
I'm not sure you can retrain your cerebellum when it has literally shrunk. But I still, within reason, try to do what I have done before, driving, walking with cane, writing, using the keyboard, walking with grocery cart in supermarket. My symptoms are pretty much the same as Terry's list. I don't have muscle jerks, but I do have occasional pain from peripheral neuropathy.I am compensating in many ways, but the most dangerous thing is descending stairs. I use two hands and never carry anything down. I throw it down! I do fall down when I change direction too fast. I avoid crowds or really hang onto someone. Going to the theater and coming down the balcony stairs at the end was a nightmare. I will never sit in the balcony again. Yes, handwriting is in the process of changing but not too much yet. I am fatigued a lot and really have to pace myself. I am squinting a lot as well.
I think if two ataxians met each other in the dark, they would know each other instantly.
neta said:
My handwriting is quite illegible; my typing is slower and filled w mistakes (which I correct); if I carry something too heavy, I can tip forward with it; I have avoided the company of many people; I no onger wear . But remember whatever you "give up" will be lost. You can supposedly retrain your . Not sure I believe this... but have been told this by numerous physios.
I picked up from a Speech Therapist at a NAF Convention a few years ago now that for speech to use gum chewing as much as possible thought your day. To get the muscles stronger in the throat all the time when they aren't needed so when I need to depend on them they are there and help me out. I noticed it helps me with swallowing, and enunciating (sp?) my words. So that's what I do as much as possible when I don't really need to swallow or get things across to another and it helps allot.
I stopped chewing gum for a few months and noticed a slow down, a real difference so I went back and was able to control my words again and swallowing better. I also have to make sure my words come out slower than I think they should. Doing that they come out normal.
Balancing is challenging in everything I do. I try to work on balancing before I have to use it and it seems to help me. I have a few friends that have ataxia that I see regularly and seeing there daily struggles helps me focus more on working at avoiding some of the same things they have to deal with. Some times that helps other times it helps me feel ok and just allowing myself not to do things perfectly. Taking the pressure off oneself not to expect perfection is the biggest help. Hope that helps some!
I have mainly gait/balance problems that lead me to toppling over to the left or backwards, double vision in my left eye that is not too bad that I can't read with reading glasses. The visual thing is interesting to read about 'cos I also get distracted by seemingly unimportant peripheral movements which cause me to turn my head too fast and lose balance. I recently got thrown by a car headlight shining through an old wooden fence, the moving diagonal shadows being very difficult to decipher!
As for speech/swallowing, I have no symptoms though I do keep biting the inside of my lips/cheeks. I noticed the walking backwards thing. Never even considered it but just tried and moved at great speed but with absolutely no control. Won't be trying that again!
All of my symptoms are compounded by fatigue/stress and I often get brief whole body spasms just before I fall asleep.....
I have apparently non-progressive ataxia caused by some kind of brain illness at xmas.
I was diagnosed with cerebellar degeneration in September 2013. Here is my symptom list (most of which I was dealing with for years but just chalked them up to time and circumstance):
-loss of balance -especially with side to side movements, quick movements, walking in a crowd and navigating stairs
-I tend to tip when carrying anything heavy
-I lost the ability to jump (This one scared me. My physical therapist asked me to jump over a crack in the floor and I couldn't. It took four weeks of therapy to barely clear the crack).
- Blurred and double vision especially when I turn my head or try to follow something (nystagmus)
- General Fatigue
-Muscle spasms especially in my thighs and calves
-Cramping in my hands and feet.
-Loss of muscle tone
-Constant tightness in my lower back and hamstrings
All of these symptoms tend to intensify when I am under stress, fatigued or when there is a change in weather
I have a lot of same things. They r worse if I get too tired. Speech therapy OT n PT helped me some.
You have all summed it up pretty well. Glad to know I am not alone !!
I also have autoimmune ataxia but no pain, spasms or eye issues. I am being given monthly doses of IVIG-- that's short for "intra venous immunoglobulin" I wonder if you get the same??
displaymom said:
Everything is about the same for me, I do have auto immune cerabellar ataxia ....
I have much the same. I find that sometimes I feel like I am losing my balance forwards even with nothing in my hands. Things do get a bit worse in the evenings when I am tired - luckily I'm still working and I'm at work first thing in the morning! People at work know about what I have and are very supportive of it. I told them in case there is a fire alarm or other evacuation - the last thing I need is someone pushing me from behind when I'm moving as fast as I can!
Jumping - hadn't given it too much thought but I think it's either gone for me or would be very difficult. Going down stairs carrying something - it has to be in one hand so I can hold on with the other or it's not going down. Fine motor control is still ok - hopefully it sticks around for a good while (since I use computers at work!). I've been on a prescription for Baclofen, but not sure it's helping with anything for me right now.
The loss of balance I was trying to deal with before I got diagnosed. I was doing karate and the sensei at the dojo took me aside to tell me that over 4 years she'd seen people improve and she'd seen people stay the same, but she hadn't seen people get worse. That got me on the road to figure out what was going on. At least having a diagnosis helps!
Yes, the tipping forward is a new balance issue for me. Sometimes its accompanied by hurried walking -- maybe that's the body's way of compensating for the tipping. Light weights on the front chest (as high as the collar bone) or magnets might be useful to control this. I agree with previous writers that evenings, darkness, alcohol (though calming) excacerbate ataxic symptoms . But supposedly it's good to walk (take someone!!) at night.
I think the "hurried walking", at least for me, is the body trying to catch itself so I don't have (another) painful encounter with the ground.
Could very well be. In any case, it feels like the wind is pushing one. More "symptoms": Walking on sand in hard. In fact any terrain switch is challenging; street curbs are a hassle to negotiateif they aren't low; if my legs are too tired getting up on a big step, can cause me to stagger. My NYC physio told me not to take those extra steps. and to limit staggering. Use self discipline and mind control, he says. He's a big believer in retraining the brain and insisted that i walk up and down a short staircase without holding on to anything but his pinky! (I think I broke it!!)
BWGreen said:
I think the "hurried walking", at least for me, is the body trying to catch itself so I don't have (another) painful encounter with the ground.
Walking downstairs holding on to only a pinkie? I would break it too!
lol. Saw him examining it after our 'walk'. Serves him right.
BWGreen said:
Walking downstairs holding on to only a pinkie? I would break it too!
He was probably examining it to see where the splint should go!
Right. But he did say, "see, you can do it." Do what? Break his finger? In truth, he was confident that even if I fell on him, he wouldn't topple(husky guy ).I can deal with stairs--both up and down--but I usually grasp a bannister with one hand and a wall with the other for extra support--although he says I should not get intothe habit of holding onto walls.
BWGreen said:
He was probably examining it to see where the splint should go!
Unfortunately, it's not a habit for me - it's a necessity that I grab on the handrail, at least for going down stairs! Going up - I can manage without the rail sometimes (if I go slowly).