I am very new to all of this, my current doctor is saying Cerebellar Ataxia, but don't know if the symptoms are caused by something like a viral infection, Lyme, B-12, Paraneoplastic Syndrome, or sporadic or inherited reasons.
The not knowing is making it really hard for me to be comfortable with my family seeing all my symptoms. They look so worried when they see me with the rollator I just got- I can't stand the looks in their eyes. I don't have anything to tell them when they ask about what is going on--- I don't know if I will be dealing with this for months or for forever. I don't know if I'll get progressively better, stabalize or get much worse.
I try very hard to hide things like the tremors, the head and body twisting ( for lack of a better term ), the difficulty with breathing and swallowing, I try to speak clearly but I slur my words..
So I come up with ways to disguise it .For example, if my hand is shaking I will grab on to the chair arm or if I can tell that I am slurring badly I'll get someone else to talk (not hard in my family lol ), or I won't eat around people if I've been having a hard time swallowing. Except for the lack of balance, the other symptoms come and go throughout the day - much, much, much more pronounced with stress. Some of them are getting worse overall - in particular the breathing - I don't know how to hide that one.
I'm middle aged, and I know how much this is scaring my parents, and am not wanting to worry them, or my young adult kids- -- who have their own babies to worry about and care for. The only person who really knows about all of it is my husband and even with him I try to minimize for a lot of reasons. Does anyone else try to hide their symptoms ? And what is effective ?
Hi, i know what you are going through, as i used to hide matters from my wife and family/friends
but they knew something was wrong. i have had symptons for about 8 yrs, until recently i was diagnosed with progressive cerebullum ataxia.I have learned to live with it. its frustrating
but i swim , play golf!!! with a buggy mind, there is pain and frustration but because i enjoy the game
i supress the symptons.I know i will not be able to play in the future, but i will seek something else to pre occupy me. Also i went on holiday to rome , first class service for people in wheelchairs
here and abroad, worth noting if you want to go abroad with your family. You get fasttracked through passport control!!
why i look at this disease wheres a negative theres always a positive.
Fortunately as this is a slow progression , it is quite easy to adapt.
my method would be to retire, to minimize confusion and loads, obligations for your family, your children; relax first, have a calm time for yourself to reflect about your future tactics. Very much has always helped me to reflect what other people have done in my situation; what i have read in books, e.g. Zen-books, and first: bring to my membrance, what has been the course of my life till now, and what where the successful tactics which allowed me to survive.. I have had several diseases in my life, and learned a lot by coping with then. How is this with you? Have a nice day, kind regards, margarete
My Ataxia came as a result of brain stem surgery last year. I was not expecting to use a walker the rest of my life (I am 43), and it does suck seeing the sympathy/concern in people's eyes. It took me a few months before I finally decided to deal with it. I would much rather not have this to contend with daily, but it has changed me forever and believe it or not, changed for the better!
I hope you can talk to someone about your feelings. Been there, I know it's hard!
Sometimes its easier to meet ataxia head on. Ive always been a showoff so it has been hard at times - no demure little old lady I fear. But the good news, for you and me, is that it was diagnosed by chance over 40 years ago. I'm still here! Learning how to fall (sounds weird), how to transfer balance and making the most of all the aides available to you is of paramount importance. Physios these days have had training in exercises etc. for clients with ataxia. Social Services can make your life more comfortable with things like shower stools, raised loo seats, bath aids (to get you in and out of the bath() and grab rails. Your GP will put both in touch with you.
Ive had my hair dyed a spectacular red and wear the ataxia tee-shirts which read on the back 'Im not drunk, I have ataxia' So you see if people want to look at me, Im there in all my glory!!
Dont hide your symptoms. You, and all of us with SCA, are very special
Hi - I was diagnosed about 40 years ago as well and there was '0' info on it back then - not like there is now. I tend to hide my symptoms by just not going out on my own that much. I am still on my feet but am really self-conscious of stumbling around in front of other people. Nobody knows all the struggles I go through to get through a day - not even my husband but I'm trying to remain positive - I put together an introductory letter about my condition a few years ago if you would like to read it I can send it to you.
Hi Obli.
The word Ataxia was foreign to me till I met the neurologist in March 2011. I too tried to hide my symptoms initially when it was manageable. Now I cannot for my balance is affected and my walking too. I will be getting a walking aid soon to venture out. I am mobile indoors and I do not step out. Our pride is the hindrance for hiding our symptoms. At this point I want to let go my pride and accept reality. I make it a point to remain calm and happy. There is no Ataxia inside our heart! Stay strong.
It IS better in the BIG picture to meet ataxia head on. I will be the first to admit that my lack of progression is a BLESSING, but exercise has been the 'MEANS' to that blessing (God gets ALL the credit; However, I am accountable/responsible
God continues to keep me strong & healthy - I know my strength comes from Him ONLY; however, He is a God of 'means' and I must/will ado my part in HIS power. I pray that I will by an encouragement to others and give testimony of Him! Ride Ataxia - Educate · Enable · Empower!
The Ride Ataxia Cycling Team has traveled 3,500 miles in the past three years raising invaluable awareness for Friedreich's ataxia and bringing together over $800,000 in research funds for a disease with no treatment, no cure, ... until now. Ride Ataxia Started as a crazy idea. And it has become the crazy idea that has changed the outlook on research for a rare, lifeshortening disease. Please prayerfully consider donating to the Team or sponsoring me as I Join the ride and become part of the crazy idea that is changing the world - Ride AtaxiaEducate · Enable · Empower!
Thanks for all the feedback. I had been hiding/ignoring the symptoms of this, and whatever else is wrong with me ( not sure if symptoms are related, or separate problems ).... for a long time. So when I had a really sudden dramatic progression that landed me in the hospital it was a complete shock to my family- because they didn't know ANYTHING was wrong -- except that I'm clumsy, and that I had ongoing nerve pain from a surgery several years ago. But other than that I had been out at work, babysitting my grandkids, cooking dinner etc.... my husband knew I was struggling greatly with all these things, and having to make adaptations to get by, but no one else did.
I had several bad falls previously, including one that I think might have been at the start of this, a horrible experience where I fell on the sidewalk with my infant grandchild because I tripped while turning.
I am having such a hard time coping with all of this, I miss taking care of my grandkids so much, but even I know that I can't care for a baby safely. My family knows that something is wrong with my balance - but that's it, at first they just thought it was my "bad ankle" that I twist all the time. I dont think Im ready for them to know about the breathing / choking problems or the general shaking etc.... sorry don't mean to ramble, just having a very hard time today.
I am a 58 year young woman who was diagnosed about 8 years ago with sporadic cerebellar ataxia (non-hereditary/unknown cause). Have you had an MRI as that would show atrophy in the cerebellum, which might explain some symptoms you're experiencing. My ataxia effects my balance, dexterity, speech and swallowing. I also experience tight muscles (spasms ?) and some pain in my joints, particularly in my hands. I started using a cane when I leave home to prevent falls. Do I try to hide my symptoms? No I don't, as my family and friends know I have ataxia and are very understanding and supportive. People I don't know when I'm out and about have been very kind, holding doors open etc. One guy was talking on his cell phone and even opened my car door for me...ha! I try not to talk about my ataxia (except to my husband) as I don't want anyone to worry. You sound as though you're doing the best you can with limited info. Try to keep a positive attitude, even though it's hard at times, and remember, you're not "alone" with this! We may have ataxia, but it doesn't have us!!!
As a newly diagnosed, I'd be very interested in your letter. Friends and family have witnessed my stumbling and shakes for years and my wife and I will soon be filling family in on the diagnosis. Most docs had long thought my condition was purely vestibular as I have been plagued with vertigo and migraines for 12 years. the tremors and sudden bouts of staggering and falls never fit nicely with this diagnosis, but now it all makes sense. My e-mail is jjcolburn@cox.net
thank you, Jeff
Heather Kowitch said:
Hi - I was diagnosed about 40 years ago as well and there was '0' info on it back then - not like there is now. I tend to hide my symptoms by just not going out on my own that much. I am still on my feet but am really self-conscious of stumbling around in front of other people. Nobody knows all the struggles I go through to get through a day - not even my husband but I'm trying to remain positive - I put together an introductory letter about my condition a few years ago if you would like to read it I can send it to you.
Hi, my MRI's have come back normal. I also have a great deal of pain in my bones and joints --- so initially my dr. thought possibly rheumatoid arthritis, but that doesn't explain all the balance issues, problems breathing and swallowing etc... I also had a negative Lyme test ( that they are re-doing ), and a negative ANA test for Lupus. I'm so frustrated not knowing what is wrong, or what to do about it, when it has completely disrupted my life. I can't walk without holding on to furniture, or the wall, or using the rollator.
I would echo the advice of a few others; and suggest you not worry too much about hiding the symptoms. They are more obvious than you probably imagine. The main benefit I found in doing this is that it greatly reduced the stress I was putting on myself to hide the shaking et all. You will feel better around your family by letting this go. Another way to ease yours and others mind is to acknowledge the elephant in the room with a quick quip. I often make a crack about "here come the gremlins" or similar when the shakes hit and it usually elicits and laugh from all involved that puts everyone at ease.
You can still keep many of your deepest fears and anxieties to yourself if you choose, as I do with my wife as i see no benefit to getting us both spun up when I am at a periodic low point. I wish you the best of luck in your battle, and pray that you keep your sense of hope. There are no guarantees for any of us in this world but i have heard of plenty with ataxia that live long, fruitful lives.
I also have gluten ataxia and was heading towards a wheel chair when my doctor suggested giving up gluten since gluten may play a role in this syndrome. I did and 1 year later I can walk again and have minimal symptoms. I'm not saying it will work for you too but it might so you should try. But give it time, you won't improve overnight. It will take months to see improvement but you could start feeling better after a few weeks. Believe me, it was worth it.
As I have only minor symptoms yet at 38, it's easier for me to hide them. For people who do not know, I'm just clumsy and a bit off-balance. However, I don't think it's a good idea to put a lot of energy into deliberately hiding this. Telling people often made me feel relieved, and I need the energy for other things.
I've got a hereditary variant, and waited 1,5 years after the (MRI) diagnosis before sharing it with my mother's family who I'm very close with (other than my mother and a very dear aunt and uncle), because I didn't want to scare them as they might have it as well. It took so long to do all the genetic testing, and we finally figured out it's not in her side of the family fortunately.
NB: the neurologists told me mine was a hereditary ataxia (SCA14) - I think mostly the speed of progression played a major role in that: dominant hereditary ones usually progress very slowly.
NB: nowadays they can read your genes much faster so you don't have to wait 1,5 years to have 10 genes read.
My neurologist tested me for gluten intolerance: easily done with a blood test. If you're not intolerant, there's no need to change your whole diet (& eating habits) around (glutenfree is a very extreme diet - a friend of mine knows all about it).
Oblidioblida, hope you can make your peace with this soon!
