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Anyone get Involuntary movements with their condition?

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    Anyone get Involuntary movements with their condition?

    Hi

    I have Cerebellar Ataxia with secondary dyskinesia which involves extra athetoid-type movements at rest on top of intentional movement been slow and jerky.

    I'm trying to set up a group whereby people who have had a lifetime experience of dealing with this such as Cerebral Palsy can help by giving tips to people who are just learning to cope with involuntary movements as part of their adult-onset condition such as Huntingtons, Ataxia, Dystonia, Parkinsons etc

    I was just wondering if anyone within this group had tremor, athetosis (slow writhing movements) Chorea (rapid jerky movements) etc as part of their condition and would be interested in joining.

    Here is the link if you are:

    http://rarediseases.bensfriends.org/...ementdisorders

    When you first request to join its to join the community in general (there are other groups there too) then on main page you can see the groups that have started up click on Rare Movement Disorders and click on the small tab at top tight with + sign and 'join this group'

    There is an MS group on there too just starting and some other more rare disorders.

    Thanks

    Kati

    #2
    Hi Kati, thanks so much for letting us know about these groups!
    MS with cervical and thoracic cord lesions

    Comment


      #3
      Hi Kati,

      I think that sounds like a great idea for a community. I have cerebral palsy, which causes mild tremor in my upper limbs, and involuntary spasms in my lower limbs. I don't have athetosis, which seems far more debilitating from my perspective. But I know people who grew up with athetoid CP, and they say that, like any other physical limitation one is born with, it's just a matter of learning to live not so much with it, but around it.

      That would be my biggest concern about trying to get people with a congenital condition to share tips and advice with people who have similar issues because of an acquired condition (or a symptom of a congenital condition that manifested later in life).

      As someone recently pointed out to me here, there is a categorical difference between having once been able to do something a certain way, but losing that ability, and never having had the ability in the first place. Children who know that they are limited in some way will shape their life accordingly. If they find that walking is difficult for them, they will never develop the habit of going out for a five mile run three times a week to keep in shape. That's a completely different issue than having been a recreative runner all your adult life, and then suddenly finding yourself unable to even walk around the block.

      I know that's a rather blunt example, but it's true for more subtle things as well. For instance, if at all possible, I deal with my tremor mostly by avoiding the the things that provoke it. I've pretty much always used a keyboard instead of a pen to write. I can't sew on a button to save my life, so I mostly wear clothes that don't have them. I have great difficulty cutting red meat, so I don't eat it.

      Now, if for most of your life, you've been able to do all of those things, and then suddenly you find that you no longer can, chances are that the 'solutions' people like me offer will be a source of frustration to you. I don't feel 'disabled' because I can't write with a pen, or because my meat intake consists of precut chicken breast (I buy it that way in the supermarket) and all varieties of ground meat. But that's because for me, it's always been that way, and I've learned to live around it.

      For someone who bumped into their limitations as an adult for the first time, that might be a different story.

      Comment


        #4
        Hi Saranoya

        In some respects I agree with you, especially regarding the emotional aspects of having skills and losing them. I was able to walk and speak normally 8 years ago.

        But I have learnt alot from reading message boards mainly about CP and speaking to others with it. eg I discovered wrist weights worked for me or can still do quick signature by putting weight of one hand on the other and having foam wrapped around a pen to make it thicker to grip.

        I learnt about the Joystick Plus and Keystrokes from a video clip I saw of another young girl who had more pronounced movements in her arms than I have but figured if she could manage it so could I and it would allow for progression (as you can connect switches to it).

        Another young lady who can only use head switches mentioned focusing on the opposite limb whilst the other was been moved ie focusing on her left foot as her right foot was been moved to stop herself kicking the person trying to move her or pushing down on both legs to do the same for her arms. Again its a tip that works! I've learnt lots from her, though I think her level of disability would frighten others new to disability.

        The other guy I asked to join is very active and independant which I hoped would encourage people to see their life isn't over just cos they don't have full control of their movements.

        I guess I'm trying to create role models for them to see things they thought were no longer possible, still maybe with a few adaptions.

        I think I adapted quicker possibly as I went deaf at 16 years old (I'm now 41) before the ataxia started and I was moved to a college for the deaf to learn how to lip-read and train for a job. As I was surrounded by kids who had been deaf all their life I picked up alot of tricks that I wouldn't have done otherwise including learning sign so I could use an interpreter to attend university.

        I'm a logical type of person so when I started with Ataxia, I felt if I could learn something as complex as lip-reading and signing in a few years and still manage university and working, then using a wheelchair was relatively simple in comparison. Though I was originally told it just meant I would be a bit wobbly on my feet they failed to mention the rest of it!!

        I have found though as you said many others on Ataxia forums seem to be stuck in the depression stage and and can't seem to see what they might still be able to do if they tried to do it a different way.

        I thought if I tried these things and showed they worked (as they know my ataxia didn't start until my 30's) it might help others move on and see what might work for them?

        Comment


          #5
          Hi Kati,

          Like I said, I think this is a great idea for a community, and I am truly glad that you have found the equipment and adaptations people with congenital movement disorders use to be of value to you.

          I'm just saying that if you generalize this, if it becomes more than just a few people like you trolling the internet for tips from people like the ones you mentioned -- if you make it into a community -- then you might get some backlash. I have a friend who, at age 27, began experiencing mobility problems due to what later turned out to be multiple sclerosis. She occasionally came to me for advice, but told me that what I had to offer, no matter how well-intentioned, often came down to 'well, you just learn to live with it'.

          Which is what, in the end, we all do. The reason it frustrated her is that nothing I could offer ever allowed her to go back to the life she once had, and at the same time, I couldn't truly understand what she was missing, because I had never had it myself.

          Once a person has accepted their newly-acquired limitations, then I'm sure people who have been living with similar limitations since birth can offer a wealth of valuable information. What I'm worried about is the friction you get before that happens, and what that kind of friction might do to a community when multiplied by however many newly-affected members it has.

          All the same, I applaud your effort, and wish you well with it.

          Comment


            #6
            yes. more lately.

            Comment


              #7
              Originally posted by jody View Post
              yes. more lately.
              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.

              Comment


                #8
                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.
                I do this sometimes too. Like everything goes on 'pause' and it takes a touch or something external to click me back to 'play'. Hope this makes sense.

                On movements:
                I do lots of rocking- in my chair too. Especially when I am happy or hmm come to think of it... with almost anything. It's a bob from my head that wiggles me a bit. Thanks to CC I now know to evaluate myself when I do it. Do I need to go to the bathroom? Have I eaten today? Am I hot? Sounds silly but I never thought of these things before.

                Like when I am tired, my hands close up and lock. Fingers straight ahead but locked all the same. I find pushing on them opens them back up. I put them on my thighs and push fingers back and forth a bit till they reset a bit. Sometimes I'm too tired/overstimulated/hungry etc for it to work- but sometimes it works well.

                I like hearing others ways to deal with these things. Maybe they don't work for me but many times I learn from those who have experienced them longer and have new coping mechs that I didn't know about.

                I'm exhausted- so just some thoughts. Hope they make sense.

                Comment


                  #9
                  Originally posted by Saranoya View Post

                  Once a person has accepted their newly-acquired limitations, then I'm sure people who have been living with similar limitations since birth can offer a wealth of valuable information.
                  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.

                  Comment


                    #10
                    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.
                    Hi Jody

                    I have no personal experience of 'involuntary none movements', as I very rarely stop moving completely for longer than a minute (unless I'm asleep!)

                    What is your condition called?

                    Kati

                    Comment


                      #11
                      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.

                      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.

                      Comment


                        #12
                        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

                        Comment


                          #13
                          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.

                          Comment


                            #14
                            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.
                            MS with cervical and thoracic cord lesions

                            Comment


                              #15
                              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.

                              Comment

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