I have been diagnosed over a year, with cerebella atrophy, but the debilitating symptoms are starting to kick in and im struggling to know how to feel about it. I have also been diagnosed with a pineal cyst, known to cause very similar symptoms. One day my legs feel fine, walking good, head is clear, I can make decisions, be productive at work. Then the next day or day after, I cant walk properly, cant think, pains everywhere, bad speech, tremors in hands and muscles spasms. Is this how its going to be now, will it come and go like this, I only have this group who understands the symptoms so well. I am getting a bit frustrated after telling people why I walk weird because they ask, then they say ok get better soon, they don't understand. I am positive, but I have been in denial. I have to face it.
Not many people are understanding of ataxia. It can be very frustrating that most people think if we just tried a little harder that we will magically correct our condition. It’s difficult to accept that not very many people will sympathize with ataxia, people tend to sympathize more with pains and aches because it is something everyone understands and have experienced. The limitations and sub symptoms of ataxia are only fully understood by us and some doctors.
I use a cane, especially when it is winter outside (I am in Canada so snow and ice are issues for me!) and people notice and think it is a passing condition that will get better. Unfortunately this is not the case - I have to accept this as I try to explain it to those around me. The people closest to me know and can accept this as my reality. I can't offer much advice here, other than to agree with Adam - not many people (including doctors) understand.
My Ataxia is consistent, I don't have good or bad days as you do. You can clearly see on the MRI's that my cerebellum is degenerating,and is almost non existent now. It doesn't get better, just worse, and I'm extremely frustrated. Absolutely no pain at all,can your pineal cyst be removed?
I run into this, too. Seems everyone thinks we will get better with time. Little do they know, we seem to get worse. I just tell everyone who Will Iisten that there is no cure or treatment, it is just somthing you have tô live with.
So far, any pain I have is NOT due to ataxia. My symptoms are all the time,'but are getting worse -- it seems day by day, at least. Wèek by week.
Dear Anne, I have Sporadic Cerebellar Ataxia (unknown cause/symptoms 24/7), diagnosed eleven years ago, although I had very minor symptoms starting about eight years before diagnosis. My symptoms are always the same, although if I overdue physically one day, I pay for it the next. I have some pain and stiffness, although I think it's because of the way I use my muscles. I went through all the stages of grief over the years, but think I'm finally at the acceptance stage (most of the time, as this is very frustrating and challenging), which is refreashing! As other's have said, exercise and eating as healthy as possible have helped me, even though it's difficult! My ataxia has progressed over the years (I've used a quad-cane the past five years, as I fell. Falling is NOT my idea of a good time...,ha!). CT scans (I've had three thus far) continue to show additional atrophy of my cerebellum. My neurologist tells me to be a active as possible (easy for him) so I am and this helps me! Always remember, ataxia doesn't define who you are as a person! Keep as positive an attitude as possible...,you are not alone in your journey! My best to you...,;o)
I’m feeling the same as you. I’ve cerebellar ataxia for 5 years now and the pain and stiffness just want go away. It hurts just to walk and balance, even though I d exercise every day. I stay frustrated. But try to keep going. I. Can’t accept the fact that it does not get better. Frustrated and sad
This is a difficult disease to accept.Others on this site have shown you how complicated it is and even experts differ.What has helped me now after 7 years with F/T CA is to tell myself someething has gone wrong with one part of the brain.I have spent bhours trying to get to the bottom of it.It seems there are nummerous types,different symptoms and varying diagnoses.It is a minefiield.Just try to get the most you can out of each day and find a way rouund some of the obstacles.There will be goood days and the odd bad day.Do feel free to vent here on the bad days. Your emotions are understandable. Many of us are grieving for basic skills we once had and now are lost.I had aa good time for 6 years!
Please excuse the typos---tremors .
I think we need help coming to terms with a condition that can get worse and to some has no end.It's a mystery and frustrating.
The diagnosis of idiopathis cerebellar ataxia (ie mine) is so difficult to accept as I'm not sure what will happen in future. I have been, and am probably still in massive denial but do accept that I walk like I'm drunk and talk like I'm drunk especialy when tired. Shopkeepers give me odd looks and I have been asked if "madam has been drinking" by a shop assistant. Lack of knowledge doesn't help and pnly yesterday I got word that I would receive a pension, but how much remains unsure. I wait to see what "progressive " means, still in denial. Take care and keep linked in.
Have you tried gluten free? Gluten free, exercise and sugar reduction has helped me manage my symptoms. It has improved my walking. Twitches and pain. Of course when I overdue things I still pay the price of pain and fatigue. It’s a balance, keep working at it. Try to track when things get worse. My triggers are anxiety, gluten and overdoing it physically. Of course I have days where I am scared of the progression. I know that I am doing everything I can to get the best results and that comforts me. I take codeine with Tylenol 3 x a day for pain but I also seems to have some therapeutic effect on my ataxia. Keep researching and looking for answers if your cause is unknown. Yes I have days with minimal symptoms and days where I don’t even want to get up for fear of falling or creating more pain.
I find no sympathy in others and those who I explain it to react with such horror.
I hope you find some relief mentally and physically.
And so it goes. You notice that we are all different, but all the same. Keep a good face! There is not a universal treatment. I would say to stay as active as you can. A workout facility would be good if they are helpful to your situation. My hospital has one, and the people are sensitive, so that helps. Like you, pain is not a problem. I would use the cane to avoid self conscieniosness. You should consider an antidepressant. (I have Effexor xr plus an anti anxiety of Buspar and there is also a tremor relief that I have seen mentioned.) This is a good place to see and compare problems. Don't even try to explain it to the general public. I simply say that I have a neurological malady that affects my balance and let it go from there. After that, I just give short answers.
Ataxia is progressive but it pretty much does whatever it wants. People don't realize that your balance, tremors, speech, eyes are just examples of what can be affected. It's very frustrating and can get you down, so your mental status can be affected.
Exercise and diet seem to help. There is no standard of treatment so you have to find what works for you.
The only people that seem to understand are those that have some form of CSA, pretty much the people on this website. It's a great resource to get feedback or even just to vent.
My husband began with lightheadedness and then pressure in forehead and walking drunk. He has been to Mayo twice and Barrows once on the neurological floors. They cannot find the cause only know the symptoms-cerebellar ataxia. Within a few months he was in a wheelchair and cannot walk without two people on either side of him due to balance and coordination. He also has nystagmus where he sees double most of the time and things are blurry and can only read the large print in the newspaper. We are both on antidepressants to cope-that is helping. He has difficulty holding a spoon or toothbrush or buttoning his shirts etc. Sometimes he just wants out of all of this...but our faith keeps us pressing on. He is having muscle message therapy and acupuncture (without the beliefs) and they are helping. His Movement Disorder doctor gave him botox injections in his neck which have helped some with tremors but has made his speech much worse for about two weeks the doctor said. Just began on gluten free diet. He also has trouble swallowing. We just won't give up!
Dear Marie, You sound like a very supportive wife! Ataxia is very frustrating and challenging, as everyone is different in severity of symptoms and progression, etc. Even an ataxia neurologist doesn't have all the answers. Just keep doing the best you can, as there's something to be said about you and your husbands fighting spirit! ;o)
thankyou so much everyone, it is really comforting having people that understand what your going through. I do watch what I eat, exercise and have been buying foods without gluten, it does seem to help. I look forward to reading all the discusions on this sight, its very informative.
Anne,together we stand and we are a united loud voice to find a cure for future generations.Stay positive.And rant here anytime you're feelin' down..Because I damn well do..
My Ataxia is consistent, I don't have good or bad days as you do. You can clearly see on the MRI's that my cerebellum is degenerating,and is almost non existent now. It doesn't get better, just worse, and I'm extremely frustrated. Absolutely no pain at all,can your pineal cyst be removed?
To take a pineal cyst out costs around $100,000 apparently, so its staying in for now, lol.. It sucks now your ataxia is consistent, it must be really frustrating for you, do you have some home help? I wish no-one was going through this, to loose the ability to walk, speak, see, think, is like a horrible curse. To stay positive some days Is hard, but please message on this site, when you need to vent because everyone is so supportive. Stay strong. Anne
