Thanks for all the informative answers. It seems that the symptoms run the gambit and most of us have most of them but some symptoms are worse for some than others. After reading all your responces I go oh yeah I have that too. I guess the body does try to compensate. I remember back when I was a child I had anxiety and anxiety seems to be a common thread in a lot of cases. Do any of you remember being anxious or stressed as a teenager?
Not me - but my symptoms didn't get too noticeable until my late 20s / early 30s (I'm 43 now). Once I was diagnosed, my mom said she just thought I was a bit of a klutz at times.
Dear Terry, I was diagnosed with Sporatic Cerebellar Ataxia (unknown cause) eleven years ago. It has progressed, albeit slowly. It affects my gait/balance (I use a cane when I leave my home, but am able to walk, carefully, inside my home without it, I just bounce of walls and furniture. I also use an Access Active Rollator or trekking poles for pleasure walks outside), dexterity (writing, printing, fine motor skills), speech (slurred) and swallowing (sometimes coughing/choking). I also have extremely tight muscles and do basic stretches each day. I also exercise for strength and balance, as that helps. I don't do escalators, up or down, but I can go up or down stairs, holding on to the banister and going slow, especially down. My left eye gives me trouble more than my right with blurriness. I don't like to navigate in crowds either. I'm safer if I move or turn slowly..., ;o)
I remember being extremely anxious in elementary school but I also remember I could outrun anyone on the playground. That changed when I entered jr high. I thought just teenager but now That I think about it I did not run anymore, became extremely clumsy could not do a chin up if my life depended on it. I only weighed 90 lbs at 14 but still could not do physical things like the other kids. Could only slow dance n that was it. I was tormented by others because of it. I never outgrew that clumsiness. N now after 40+ years later I finally know why. Ole Ataxia. At least I now know I’m not crazy there really was something wrong!
I never gave any thought to the inability to dance - I didn't really like the music so not dancing didn't bother me too much!
I didn't have anxiety much as a teenager, but then again I was very athletic and active (no symptoms of ataxia until about 18 years ago). But now I do feel anxiety at times and blame it on my ataxia. I think I get anxious at times because I have to plan everything (how I'm going to do things/every move I make) 24/7, and it's some what overwhelming. Plus, I'm so slow in a "hurry-up" world, which can be unsettling. That's my theory..., ;o)
I agree with Rose. Planning around the ataxia is very nerve-wracking. I am anxious about boarding trains (I do take escalators) and dealing with crowds.
I wasnt anxious (or so I recall) back in childhood or in the adolescent years, although I did have a bout of anxiteties (about sex) when I was about 19 and was treated with a drug, not a shrink. My neuro says the ataxia definately causes depression and anxieties. It's a chemical thing. I have been going (went) to a shrink (psychiatrist) who has tried to tell me that I am depressed and the depression mimicks the ataxia. (Fact is, I dont feel down.) Though I do miss my old life. Not sure he is right. I feel most anxious in the a.m.
I agree - things have to be thought-out before they are done, and accepting help from strangers is essential at times. Last fall the wife and I were in a London tube station with no escalator or elevator - getting suitcases up the stairs was going to be a real challenge! Luckily for us, a gentleman offered to carry one of our bags up the stairs - made a huge difference to us! Depression - I think that I have bouts of that, but not too badly; mostly I have frustration at not being able to do things anymore. Other than accepting what I can and can't do and not thinking about yesterday I don't think that there's muuch that can be done.
Neta, I also feel more anxious in the a.m...,what's up with that? I've been on a therapeutic dose (200 mg) of the antidepressant, Sertraline (generic Zoloft) for about 20 years (originally for a reason that I won't go into now). Anyway, when I was clinically depressed and went on it, I suffered from EXTREME anxiety all the time, but it was much worse in the a.m. The anxiety I have now is different, and I do blame it on having ataxia (diagnosed eleven years ago, although I had small symptoms starting about eight years before). Except for feeling occasionally sad about having ataxia, I'm no longer clinically depressed, thankfully! ;o)
I also take 200 mg's of Setraline (here its called "Lustral") at noon with food and one tablet of Klonippin (here its called "Clonex") before I go to sleep. Why anxious in the a.m.-- I imagine because the drug effects are "over" so to speak. And something caused weight gain ugh!!
Sounds awful and I would complain... but people are helpful generally. Why were you in the tube with suitcases? Ever hear of a taxi or a lift from a friend or relative? Dont make things harder on yourselves. In NYC, there is a thing called "Access a Ride" (maybe throughout the USA) which drives handicapped folks.
BWGreen said:
I agree - things have to be thought-out before they are done, and accepting help from strangers is essential at times. Last fall the wife and I were in a London tube station with no escalator or elevator - getting suitcases up the stairs was going to be a real challenge! Luckily for us, a gentleman offered to carry one of our bags up the stairs - made a huge difference to us! Depression - I think that I have bouts of that, but not too badly; mostly I have frustration at not being able to do things anymore. Other than accepting what I can and can't do and not thinking about yesterday I don't think that there's muuch that can be done.
We are from Ottawa and were on vacation - instead of a cab from St. Pancras (we took the EuroStar from Paris to London) we took the tube to Paddington station to get to our hotel. In hindsight maybe not the brightest idea we had - but at least the beer was cold afterwards!
For some reason I never thought of anxiety as a side effect of ataxia. I t just seemed like something that I had and I had it long before my symptoms of Ataxia really showed up. Anxiety used to be so bad that when the phone rang in the office I would go to the bathroom and turn on the water so I couldn't hear the conversation because I just knew it was bad news. Thankfully the Clonazapam helps with that and most of my Ataxia symptoms to a point.
My mum was diagnosed 9 months ago now but we, her children, already knew what was wrong as her brother had already been diagnosed. She started falling 2 years ago after a mastectomy, she was told it was an inner ear infection, she is now wheelchair bound and cannot even stand up and support herself. She is 73, her brother is 2 years older and yet he has only just started falling, we believe he will be wheelchair bound within the next few months. Mum cannot write, her eyes ‘move’ constantly so she can’t focus, when you give her something to hold she ‘grabs’ at it because she has lost all finer? actions. She is now in an electric wheelchair which does help but when it comes to stopping it she’s crashes into everything because her brain has told her to stop but her reactions are far too slow. We, as in the children, have been advised to be tested, as well as the grandchildren as it is believed to be hereditary, the consultant has never seen a brother and sister have it like my mum and her brother have. My younger brother, 32, trips a lot and my eyes are beginning to not focus so well but these could be due to clumsiness and age, we visit the consultant in two weeks. We haven’t told mum what could eventually happen as we don’t want to frighten her but she is well looked after and we hope she has got a fair few years left, I have already started preparing just in case…