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Anyone get Involuntary movements with their condition?

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  • #16
    "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

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    • #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.

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      • #18
        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, 08:28 AM.

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        • #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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