Hello, i am new here. My name is Christine.
68 year old female, a runner for 35 years until I suddenly had a cerebellar stroke in April 2012 which caused ataxia in my left side, total lack of balance and vision field cut. With rehab, I was able to walk on my own, although very akwardly, but I am feeling "drunk constantly. I am getting very frustrated. My neurologist does not seem to think I will get back to my old self. And I personally feel I have reached the end of my progresses.
Anyone out there with the same type of history? Any relief possible for the dizziness?
This is not genetic ataxia, so do doctors know more about this type?
Any comment, suggestion or tips will be welcome. Thanks for any help
Hi Christine - I’m in a very similar situation. Frustration pretty much nails it.
Probably the most important thing to remember is how much progress you’ve already made from your “new” life. I had an AVM brain bleed (categorized as a stroke), then in a coma for a few weeks, and lost a lot of my former functioning…and I constantly have to remind myself of that different starting point, rather than how I was before or what I could do before.
I had a bit of dizziness, but most went away…I still have some un-defined funky thing with my vision, but I’ve just got used to it.
Regarding Ataxia, I was diagnosed formally shortly after my coma…I’m going with that; however, I sometimes feel that it’s a “go-to” diagnosis…who knows?
Either way, my main belief is to take care of yourself and put your passion into action with a goal-date since you really don’t know how much time you have left.- ataxia or not.
Sorry to hear that, what helps me is no alcohol,caffiene, plenty of sleep and also fresh air and a walk even with a stick! It took me a year to manage, hope you will be able to soon.
I was told I would never give up my cane. Thru diet, exercise and rest I have not used a cane since may 17th. Keep going. My ataxia was induced by prolonged use of minocycline.
I am/ was in a similar situation. I had a brain injury in 2008 .. (similar to a stroke) I was left with some cognitive deficits, vision issues, left side weakness and a whole lot of dizziness and nausea. I absolutely understand what you mean about feeling drunk constantly. I have some trouble with proprioception, vision issues and I am getting no vestibular info from my left side but I am from my right so I am/was constantly pitching sideways. I am really doing not bad now, but I have to tell you recovery from a brain injury tends to be SLOW. We are talking not just months but years and a lot of hard work.
Part of it is actually recovery from the brain damage with time, part is experiencing things and working on building new neural pathways. Another part is finding ways to do things differently or use adaptations so you are still able to get out there and do the things you need or want to do. I would say some of my balance challenged stroke friends are still showing improvement at 4 and 5 years!
If your rehab was focused on getting the walking going did they give you much vestibular rehab? You absolutely need to look into that. The point is to expose you to movements (including eye movements) that make you feel awful and with exposure you gradually relearn to tolerate the movements, just like building up the walking skills.
Besides working with regular physio I have been going to aquatic therapy which has made a huge difference to me. I also started doing adapted Tai Chi a year ago when I was at a plateau and had another huge set of improvements.
One small example of an adaptation -- I know a fair number of balance impaired people who find it really helpful to walk with nordic walking sticks or even two canes. You kind of get positional information through your hands that your eyes and ears aren't giving you.
Thanks to all of you for your advices and kind words. May be my frustration is compounded by the fact that this my second encounter with a rare disease. I was diagnosed 20 years ago with Long Qt Syndrome, a disorder of the electrical system in the heart which causes sudden cardiac death. So I am used to literally fighting for my life (with the help of an implanted defibrillator) and I have never let this problem affect me. But this stroke! really? I have been living a very healthy life, no smoking, drinking …I have always practiced some kind of sport. In a word I played by the rules. I feel that I should now eat, drink and be merry. But feeling drunk all the time without drinking is really getting to me. I find myself looking forward to night time so that I can go to bed.
One question which might sound crazy after all I have told you: does anyone drive at all? I could manage with my eyes and arm I think, and it feels like the dizziness is not bad at all in the car, but I am scared to even try. I would certainly not want to cause an accident.
I stay as active as possible during the day and walk everyday, always without a cane if my husband is with me because I can grab his hand for support, but I do have one for my “solo” walks so that I might not fall should I trip…
Thank you again for all your answers. I will be in touch.
Oh I forgot. Someone mentioned swimming pool. Do you swim laps or do exercises in the water? I am going to be reassed by my rehab therapist next week and I have found a neurologist who specialize in ataxia in my area ( Atlanta, GA)
Hi Christine,
I had a stroke in 2010 at the age of 51. I use a walker & now have a scooter that I have used very little. I have yet to be formally diagnosed as my first neurologist gave me a diagnosis of “tremors.” I cannot write & have had to learn to use my other hand to do everyday things.
I have used a pool for therapy & exercise, it makes a huge difference for balance.
I drive when I feel it is safe, I am over careful with that.
I have felt “drunk” in the past, it is not a good feeling.
It never ceases to amaze me about what others here have dealt with & their outlook, I find it inspirational.
Good luck.
Christine Gokey said:
Thanks to all of you for your advices and kind words. May be my frustration is compounded by the fact that this my second encounter with a rare disease. I was diagnosed 20 years ago with Long Qt Syndrome, a disorder of the electrical system in the heart which causes sudden cardiac death. So I am used to literally fighting for my life (with the help of an implanted defibrillator) and I have never let this problem affect me. But this stroke! really? I have been living a very healthy life, no smoking, drinking …I have always practiced some kind of sport. In a word I played by the rules. I feel that I should now eat, drink and be merry. But feeling drunk all the time without drinking is really getting to me. I find myself looking forward to night time so that I can go to bed.
One question which might sound crazy after all I have told you: does anyone drive at all? I could manage with my eyes and arm I think, and it feels like the dizziness is not bad at all in the car, but I am scared to even try. I would certainly not want to cause an accident.
I stay as active as possible during the day and walk everyday, always without a cane if my husband is with me because I can grab his hand for support, but I do have one for my “solo” walks so that I might not fall should I trip…
Thank you again for all your answers. I will be in touch.
Oh I forgot. Someone mentioned swimming pool. Do you swim laps or do exercises in the water? I am going to be reassed by my rehab therapist next week and I have found a neurologist who specialize in ataxia in my area ( Atlanta, GA)
You sure are a fighter and that makes all the difference.
I drive. I got my license back -- almost 4 years post event. It took a lot, but I did it eventually!
I am a safe and confident driver during the daytime. I choose not to drive under bad light conditions because my depth perception is really off once it gets darker. I also try to avoid really busy downtown traffic because even though I feel safe driving ... I can wind up with headaches and exhaustion when things are really visually busy. Hospital Occupational therapy departments can probably test you, give advice or redirect you. I caution you to be sure you are ready before challenging for your license back.
about swimming...
I do like to swim laps but really still find it hard to do much ... I still have too much left side weakness and can't go in a straight line.
What I do is go to group class in a hospital pool. The water is warm so it is relaxing to the muscles. The sessions are run by a highly trained aquatic therapist who really knows what she is doing and can challenge each of us appropriately. (Had a physiotherapist working in the water with us on occasions too.)
The water is physically supportive so you don't have the same worries about falling as you do on dry land so you are safer and able to push yourself differently. At the same time the water provides resistance just walking in it and that is great rehab and exercise. One comment is the movement of the water can be very challenging for dizziness, but I found I had much quicker vestibuar improvement because of the water therapy.
Sorry If I am writing way too much today. I know how hard it can be to get support and information on ataxia and dizziness post stroke and I want to help.
Good luck with the new neurologist and your rehab reassessment.
Hi. I am 57 with severe ataxia. I am confined to a wheelchair, can’t write and my voice sounds funny. I had a stroke during surgery to remove a benign brain tumor in 2009. My balance has also been affected. Because of ataxia I am unable to cook, drive,sew or do anything I did before. I am totally dependant.Thank goodness for my husband. I also have someone who comes twice a week to do stuff. Long term care insurance has helped a lot financially . Technology is essential like kindle smartphone, iPad, computer (I had a business called Computer 101 so I am very computer savvy).
Dear Christine, Welcome to the fold! I am soon to be 59, diagnosed about 9 years ago with sporadic cerebellar ataxia (non-hereditary/unknown cause). I had genetic testing this past year, which was negative. No one in my family has ataxia, except me. I have no idea why I have this! It effects my gait/balance, dexterity, speech and swallowing. I use a cane to prevent falls when I leave my home. Anyway, the best advice I can give you is don't give up or give in! Even though ataxia is frustrating and more than challenging, keep doing whatever exercises you can do safely! Exercise for strength and balance helps me the most! Physical therapy may be helpful and as other have said, aquatic exercise would be great! I do drive and consider myself to be a safe driver, as I'm always very cautious. The hardest part for me is getting in and out of my car...,ha! I have experienced dizziness, but not constantly, so I'm unable to help you with that...,sorry! Unfortunately, I don't think doctors know much about ataxia,whether genetic or not. You kind of have to be your own patient advocate. But with all the great people on this site, dealing with ataxia due to different reasons, hopefully you'll find the support you need to get you through!!! Best wishes..., ;o)
About swimming- I went for about two years and met all sorts of disabled swimmers.At the time it made me feel so grateful.
Now I don't go because dressing and undressing is such an ordeal. It is good for you-keep it up while you can.
About driving- I have my license til the end of the year.The small mobity car sits on the drive for emergencies.I can drive butchoose not to.I thought it would be the end of the world but it's surprising how you adapt.I kept driving for three or four years safely. I have only given up recently because I am the sort of person who would worry.
It is nice to know you can drive and choose when to give up and not be forced into it.
This is really a wonderful place. I very much appreciate everybody’s answers and advice.
I will keep reading the posts to learn more and let you know if I learn anything from my new doctor in March.
My best wishes and good luck to all.
This is the first time in over 20 years that I have seen people talking about ataxia and stroke, altho ataxia has long been considered a symptom of stroke in medical journals. I had an aneurysm burst in my brain over 22 years ago, and have been in a w/c ever since....and there has been continual improvement over the years, with occational setbacks. Exercise is important- I go to the pool at rehab twice a week to walk in the water, the gym for exercises with m.s. society, and I have parallel bars in my backyard...I also get out a lot for social activities....and next month I'll be 77! I cannot drive a car, but I do have an electric cart. Frustrated as I get, i realize that acquired ataxia is not progressive.Old age is terminal. Jill Winslow
Welcome to a great site Christine (Cicina)! This is a a wonderful place for support and advice, as the people on this site all share different types of ataxia for different reasons (some hereditary, some not)! Anyway, I was diagnosed with Sporadic Cerebellar Ataxia 10 years ago (unknown cause/non-hereditary, all least for the known genetic types). Mine is not from a stroke, so hopefully you'll receive feedback from those that share this common thread! My ataxia primarily affects my gait/balance, dexterity, speech and swallowing. I find that exercise for strength and balance helps my ataxia more than anything else. Also, I try to eat healthy (good for general health). Don't give up, even though it's frustrating and challenging (downright difficult...,ha!)! As a rule, I don't suffer from dizziness, although many people on this site do, so hopefully you'll hear from them also. My best to you..., ;o)
Thank you for your input, Jill an Rose.
I too was surprised to find very little information on Ataxia caused by a stroke, but since it is a cerebellar stroke and they are more rare, I figured this was the reason.
I am trying to stay physically fit, which I was before the stroke anyway… I know that my running for 35 years has given me strong legs and good balance, which helped me walk very soon after the stroke.
Dealing with the fatigue is difficult though. I would think that constantly fighting gravity is the main reason why I feel so tired.
Fatigue is a common complaint with ataxia. I think it has to do with how we use our muscles (for example, to hold ourselves up). Yes, I agree Cicina, we are constantly fighting gravity! I take a multi-vitamin and a B-12 vitamin each day, as well as 300 mg of CoQ10 twice daily and fish oil and flax seed oil caps (make sure you always check with your doctor before taking anything, even over the counter meds). I make sure I get plenty of rest and try not to overdue my activity. I do push myself to continue to do the things I enjoy, within reason (like grocery shopping). I stretch my muscles each day, as that helps with tightness. Good for you on continuing to stay physically fit! You sound as though you're doing the right things for yourself! Best wishes..., ;o)
Thanks for your advice, Rose. I will check with my doctors for the supplements. I do rest enough. I sleep well at night and take a nap in the afternoon almost everyday.
Stay well!