Hi everyone my names emmy (online name ive had for years now) though
my real names louise or lou but respond to all 3 confusing eh…
Won’t be a long post as i’m using my cellphone ah the joys of bedtime browsing hehe.
Well i got diagnosed with non specific ataxia of unknown cause at the age of 5 yay for me i’m now 28,
So i dont seem to fit into a catagory at all from what i’ve read online so it’s tad bit odd…
Went though 13-14 years of physio and being a pincushion for all sorts of tests to find the cause before i said enoughs enough been too long of being a lab rat.
Finally nice to read storiees of others with ataxia as iin my whole life i’ve not met anyone with the disability. usually people in medical field mistake ataxia for cp and have on numerous times had to explain i do not nor have i ever had cp my brain at no point was damaged. And have to explain my specific problems and problems as with most new people who’ve not heard it.
Soo it finally a place where i can read and talk to others wwohoo
Thanks for reading
Welcome to the group, I get mistaken for having CP from strangers as my movements are quite jerky. I also have a rare form which is rarely seen, mine didn't start until my early thirties and has bit of dystonia mixed in.
I also got fed up of spending all day in Neuro's and travelling to and from hospital to be told they had no idea why it had happened and there was no cure!
Quite an intense daily exercise session has worked for me though unfortunately I only discovered this recently by chance and had already been in a wheelchair for some years.
Are you able to work/college etc? what is your mobility like?
Hi Emmy - just wanted to say hello ...and thank you Kati for replying first ... it's a bit like a dance floor on here ..no-one wants to be first to reply.. consequently it's usually me lol ... I can imagine all the 'lurkers' thinking "oh, there she goes, me me me" .. lol.
I cant actually compare with you young ladies anyway - it is fairly probable that my cerebellum was shrunk or under developed from birth - I was very premature but when I have mentioned that to neurologists, they discount it.
I have always had been clumsy and not able to walk in straight line ... my right foot turned inwards but... I had 'normal'?..childhood and was just as competitive as my siblings .. even now [almost 70] my symptoms are very mild.
I agree Emmy that it is not worth being treated as a pin cushion .. far better to take Kati's stance and exercise as much as possible.
Look forward to hearing from you again. Take care, Patsy x
Hi kati and patsy thanks for the warm welcome! oargh yeh pincushions time are horrible and kati answer to your question on mobility well i tend to walk with a
feet in stance duck walk and head first way but it keeps me moving. I was wheelchair bound as child so was an achievement for me to walk, will get the tumbles tripping over my own feet and havin balance wobbles usually have family wuth when out in public. I’ve done mixture of jobs qnd done school college and uni proudest moments in life as was told by diagnosing consultent i’d never complete school walk or ever be able to work
Most predominant thing for me are my shakes and muscle stiffness and currently debating on whether to go to gp for help with stiffness in wrists but dread it as been determined to muddle through. Doubled with the drs here never treated me for ataxia as been about 10 years for any treAtment
Patsy i was a premie baby too born 2 months early my mum feels was a lumber puncture that triggered my ataxia but still unknown on that Wow kati i find too much excercise causes more shakes in my whole body but love gardening and walking permitting it isnt snowy or ice i’ve had too many a bruised bum…
Thanks again for reading
Spoke to my mum this morning she said mine stems from the cerebellum from the vague discription she was given when i was diagnosed. She said it sporadic and non progressive does this mean i have ca? Can’t ask drs as my medical records upto point of leaving surrey with all that information vanished and no one would reply to essex gps request for further info. Same happened with physios request back then too
mine is mixed in with dystonia and so that element seems to cancel out the effects of having a constant shake. I do have very jerky movements though and my hands constantly flex which makes keeping hold of walking aids difficult for any length of time!
I still get an intention tremor and my arms move even at rest (not me doing it) I have found if I exercise and do something that involves concentration and trying to move arms constantly like tennis or boxing on Wii, the involuntary movements temporarily stop and I don't do bad on those types of games, as soon as I stop, they come back... this seems to be unique to the Dystonia element of my condition. As like you said most people with a pure ataxia, exercise tends to increase the shake.
I do get them sometimes though particuarly if I overdo it on the passive trainer bike, I'm fine whilst its pedalling my legs but as soon as it stops my legs start shaking.
If yours in non-progressive that is good, once you find ways to stay independant you should able to continue doing things that way for a good while. Of course old age creeps up on us all regardless of whether we have ataxia or not!
Patsy is a great inspiration at 70 with ataxia and still doing Wii Fit and staying mobile!
Thank you Kati - I do struggle with depression [and paranoia !!] ... dont know how I would cope without forums and FB friends.
Hey kati and patsy again, fully understand the tremor thats the bane of my life, i call them my shakes as may not always be noticable but I can still feel it! My hands do that alot when holding a cup or cutlery I cringe when it hits infront of strangers usually worse if I'm not focusing on said object to keep it still, I used to ge nagged to watch what I was doing as often jerk randomly I think I fidget to counteract tthe jerks and shakes always moving legs. Jerks more stem from arm movements or lower legs When i properly relax I jerk and shake so bad I feel like a pillock and make fiance laugh because I say stop watching me incase pull funny faces from jerks or shakes...hence the 30 second faces my dad used to call me lol. Find my warped humour has got me through worst of specially off days. it saw reply to other post too thought id put under new one incase..
Way to go patsy yeh I agee chatting helps though firs place ive been able to ttalk about disability such welcom relief! I have a wii fit too though gawd some of the things are awful difficult to do specially the step aerobics I have failed misrebly at that one lol my dog looks at me like im a loony
Have you got wii fit plus Emm? Kirsty persuaded me to get it - I kept bidding on eBay till I won a cheap auction and... delighted with it.
There's a flapping arms one to get the birdie up and it's hilarious but compulsive.
I do stretching ones first - all on my favourites now - then I have breakfast before the fun ones - juggling, marching with the band - I love it.
Do you drive? I had my car fitted with hand controls.
oh yeh we have a wii fit here it's fun I agree on flailing arms its why my pup watches me from the sofa lol suprised he doesnt try join in! Marching band was easy though find it difficult to hear the whistles (I wear hearing aids related to loosing hearing from measles) I like the zen one where have to control the flame.
I can drive but only provisional my last instructor was useless and mumbled whole time to himself while I said need to be clear im deaf so cannot mumble randomly at me as takes alot of concentration to move feet right way! Mind you driving costs a fortune as do lessons!
Yes driving lessons are very expensive - is it an option to qualify to just drive automatic with hand controls? I know you would need to pass theory test first but surely not necessary to pass with manual controls?
Yeh i can drive an automatic thankfully. if tried manual id be awful sorry taken me a while to answer. just would mean only driving auto
Dont worry about responding right away - that's the joy of forums - no rush.
What about hand controls? Have you enquired about using those?
No my lessons were taken in a unmodified car my only major issues were getting my feet to function with peddles or turning on the indicator light bad or what kept going I wish I had buttons for this not a stick to flick lol eventually stopped due to the mumbling of instructor and also because the instructor was insisting that my mum drive me to a town 40 minutes away to have lessons which I felt was rude and a pain to negotiate, I was fortunate I didn't have to pay for them the people who do Motability here funded them but when wanted to change instructors they said I'd have to refile for funding as was unhappy bear in mind that took weeks as it was.
oh dear - be patient and persevere - that's what we all learn with ataxia isnt it?
I agree there patsy so much patience and determination needed. Bundles of it from others too not just myself lol helping to prep dinner as type yumm while making apple pie loving corer we got joys of finding cheap disabled driendly kitchenware hope having lovely sundAy
Yes thanks -wonderful sunny weather and patient husband lifted my depression with visit to Felixstowe.
Friend me on Facebook ■■■■■■■■■■■■■■■■■■■■■■■ xx
Hi patsy sorry I havnt replied had a busy few days i've been trying to add you on facebook wit h no luck it will only let me subscribe to your profile? terribley unfamiliar with the new timeline things it's why i'm stumped mine comes under ■■■■■■■■■■■■■■■■■■■■■■ parhaps you will have more luck than me. Lovely to hear you had great day in Felixstowe used to be an old haunt of the family I spent most of my later childhood to mid 20s living near Clacton lol
Just to say hi and welcome. I have been out exploring the countryside on mynew scoooter and enjoying the warmer weather and lighter evenings>Ataxia has only affected my mobiity and speech so far.It would be wrong of me to say my brain is notaffected because obviously the cerebellum has shrunk but my cognitive thinking is just as sharp now and there is nothing wrong with my memory or marbles.Genarallly happy but i get bad days and its a nice forum to exchange ideas or just have a rant.People have generally never heard of ataxia. I was ok before but diagnosed at 48 with ca of unknown cause>i am usually thought to have ms or Parkinsons but i have got used to it .I don't correct some of them because it easier than explaining.
Hi marie thanks for the welcome sorry I havn't replied sooner, been making most of sunshine myself! I agree had few posts on here hehe, think it's same for most were are assumed to have something else sometimes ya feel like going argh Im tired of explaining again what I have to another nosey person blol.
Thanks again for the welcome And hope have wonderful week