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Thread: Anyone get Involuntary movements with their condition?

  1. #11
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    Severe ankle clonus here due to my having Hereditary Spastic Paraplegia, also involuntary finger flexing into a fist shape on both hands with the occasional spasm in both arms. HSP is a rare disorder that is very similar in symptoms to MS, tho' the progression isn't as aggressive, but we have no periods of remission.

    Quote Originally Posted by jody View Post
    clonus, spasms, and tremmors. how about involuntary none movements.

    its like forgetting you were walking or whatever you just stop and stay frozen until something distracts you again. like going tharn. its weird.
    It's funny you mention that, I get the forgetting how to walk from time to time, but only when going down stairs, I stand there having to try and work out which foot to move next, it's bizarre. I haven't mentioned this to my neuro yet as it seemed ridiculous, but if I'm not the only one perhaps I should.

  2. #12
    Senior Member Katilea's Avatar
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    oh rite.. i get what you mean now.. yes although I don't walk much if like brother is walking me into his house from car to sofa i have to think about how to get over the threshold he just knocks my leg behind my knee with his so it lifts and i can pick it up and get it over doorstep then he pushes me up from holding me under armpits my other leg will usually follow then.

    Once I'm on flat surface again I can manage as long as I got someone/something to hold onto. He has to help me get up from their sofa too cos its very soft and squishy! But I can get myself to standing from my chair.

    Your welcome to join the group Ian. Do you have any control of the finger flexing so it doesnt interefere with things like typing? mine don't tend to do it when I'm doing something else with my hands for short periods or gripping something (scooter handles/wii remote) but at rest its more or less constant.

    Kati

  3. #13
    Quote Originally Posted by Katilea View Post
    Do you think I should place a restriction on how long a person has their disability for before they can join? What may take one person 6 months to reach a level of acceptance, may take another a year or so? Maybe like in my own case the person has some experience of a disability already and wants to be able to 'just get on with it'

    I'd figured a person still engrossed in self-pity and not interested in learning to do things a new way wouldn't join anyway?

    So far a member has mentioned what medications he takes to help more severe muscle spasms.. this has been a popular topic, I've mentioned weighted wristbands in case it helps others. I'm not guaranteeing everything will work for everyone, just offering people a place to come and look to see if something that someone else has tried may work for them.
    Sorry Kati, I missed this the first time around.

    The answer to your question: of course a time limit is not a solution! Personally, I just think that people with acquired/progressive disorders share much more common ground with each other than they do with those who have congenital disorders.

    Does that mean cross-pollination between the two groups is impossible? Of course not. After all, here I am, a twenty-five-year-old who has had cerebral palsy since birth, soliciting (and also occasionally giving) advice on a message board built for people with non-congenital disabilities. I still think my perception of the issues I have with motor skills is categorically different from that of someone who has the exact same issues, but wasn't born with them. I actually, seriously believe that it's much harder for that person than it is for me, and therefore I worry that I don't have much to offer them.

    But then, that's just my personal hang-up, apparently. I sincerely apologize for mucking up your thread with that.

  4. #14
    Quote Originally Posted by Saranoya View Post
    I still think my perception of the issues I have with motor skills is categorically different from that of someone who has the exact same issues, but wasn't born with them. I actually, seriously believe that it's much harder for that person than it is for me, and therefore I worry that I don't have much to offer them.
    My motor skill losses occurred around middle age, and I benefit daily from the experiences of people who have lived with such issues since birth - indeed, it is the "second nature" aspect of the latter that can make your help and suggestions especially valuable. Experience makes for efficiency, and I am indebted to everyone with an understanding of workarounds for mobility issues, and who is generous enough to share them.

  5. #15
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    Quote Originally Posted by Katilea View Post
    oh rite.. i get what you mean now.. yes although I don't walk much if like brother is walking me into his house from car to sofa i have to think about how to get over the threshold he just knocks my leg behind my knee with his so it lifts and i can pick it up and get it over doorstep then he pushes me up from holding me under armpits my other leg will usually follow then.

    Once I'm on flat surface again I can manage as long as I got someone/something to hold onto. He has to help me get up from their sofa too cos its very soft and squishy! But I can get myself to standing from my chair.

    Your welcome to join the group Ian. Do you have any control of the finger flexing so it doesnt interefere with things like typing? mine don't tend to do it when I'm doing something else with my hands for short periods or gripping something (scooter handles/wii remote) but at rest its more or less constant.

    Kati
    Hi Kati,

    My fingers aren't bad enough to really affect any day to day things, except my guitar playing, a lack of strength and co-ordination in them makes this hobby more difficult as I've got older. Beyond that the flexing is more a annoyance than anything.

  6. #16
    Senior Member Katilea's Avatar
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    "Personally, I just think that people with acquired/progressive disorders share much more common ground with each other than they do with those who have congenital disorders"

    I can see this is likely for most people. I actually run a group for people with Ataxia. most of theirs are acquired later in life and most of them have types that take about 10 years or more to get to wheelchair stage.

    Mine took 18 months and speech went downhill shortly after, although I have additional complications so became more severely disabled much quicker than is normal for most Cerebellar Ataxia's.

    In some ways I frighten new people who have just been diagnosed and then tend to go into mass panic thinking 18 months in future they are gonna be wheelchair bound and speechless. so I have to be careful if answering newbie's posts and they ask where I am (mobility wise)

    examples: lady on her 60's had it over 20 years can still walk around her house and uses a stick outdoors and still has normal speech until she gets really tired (then tends to slur) another younger girl can still walk in stiletto's after 37 years with it.. she has a genetic disposition for Ataxia but has very few symptoms.

    Some of these feel they have nothing in common with me, and feel I don't really belong there.. I think some don't think I should be running it as I am not typical of how they may 'end up'.. but I was one of the first Community Managers on the site.

    Already been deaf since 16 and knowing from experience how much I learnt form other deaf kids it didn't take me long to realise I'd learn more from people in wheelchairs than the OT's etc and the same applied to me for when the involuntary movements kicked in.

    Incidentally I did try this topic once on a blog on the Living With Ataxia site and the ones that felt they couldnt learn anything from people born disabled or from watching kids compensating in play were people for who it had started later, had no previous experience of disability and whose symptoms were very mild and didn't consider themselves 'disabled like that'.... (still collecting benefits so they don't have to go to work though!)

    I know many more able than me who have family running around doing everything for them cos they MAY fall as they have now been diagnosed with ataxia, or they MAY drop a plate and hurt themselves.

    I've lost count of how many times I've fallen over but I still get myself up, walk my dog twice a day, make my own meals and work from home as a voluntary researcher. (have help with heavy housework, windows, gardening etc).

    So as you say there is a big difference in attitudes, not just to disability but to life in general.


    Kati

  7. #17
    Kati,

    I think I understand now why you personally feel you may benefit most from a 'mixed' community of people with various congenital and acquired movement disorders. The common ground you're looking for is not so much the movement disorder itself, but the severity of it. And you are, indeed, probably more likely to find someone who is affected as severely as you are among those with cerebral palsy than among those with ataxia.

    I personally know several people who are severely affected by cerebral palsy, since I went to an all-disabled grade school. If you'd like, I can ask some of those people if they'd like to join your community, although I'm not sure they are sufficiently fluent in English.

  8. #18
    Senior Member Katilea's Avatar
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    yes, that's it!! I think you hit it right on the head!

    I'm looking for others with the same level of disability to see what they use so I know what's still possible if/when I reach that stage.

    Recently I have been looking at alternative powerchair controls such as foot switches/head array to know if there's something there that would work for me so I don't have to worry when I get to that stage I won't be able to drive a powerchair anymore etc.

    As I said many others on Ataxia forum are nowhere near having to consider such things. Mine has had a cycle of 18 months- 2yrs from onset of either a new symptoms appearing or an existing one worsening and leaving me with a new level of disability. I guess I'm trying to stay ahead of it by mentally preparing and training myself for each next stage.

    I got an headmouse second hand recently and have just started training sessions with it, though I'm typing this with regular keyboard whilst I still can.

    I'm planning a few hours practice a week, to build up my speed in hope that by the time I need it full time I will be quite proficient with it, and coping with that level of disability will then not be as frustrating as it would if I waited until I couldn't use hands at all to start looking into alternative's for my Mac's/communication aid and powerchair which are my vital gadgets for giving me freedom and independence!

    Feel free to tell your friends about the group. Will Google translate help if they wrote it in their own language then put it though Google translate and posted the english to the group?

    We have international members on Ataxia group do that and if I inbox them I translate my message into their language for them. Is the language Dutch in Belgium? (apologies for not knowing!)

    Kati
    Last edited by Katilea; 04-30-2011 at 08:28 AM.

  9. #19
    Hey Kati,

    I was going to say that Google Translate is not the best way to communicate with someone who does not speak English, but I just tested, and my opinion has changed.

    This contribution, I typed into Google Translate in Dutch. What you're reading is the translation I got back, with some minor corrections. I suspect that the translation from one language into English can be relatively flawless. The reverse is a different story.

    Nevertheless, I have sent the link to your website to three of my friends and acquaintances. I hope that at least one of them becomes a member.

    Oh, and yes, the language they speak natively is Dutch, although that is not the only official language in my country (there are three: Dutch, French and German, ordered by the number of Belgian native speakers).

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