Physical impairments and mobility issues
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Cerebellar Ataxia

I an new member from Sweden. I am a 47 years old male. 13 years ago my neurologic doctor investigated me and told me I had a neurologic disability I did not knew I had. He said that my neurologic disability was very rare and almost no one knew what it was. He was a neuro doctor but not even him could tell me what it was, so he had to look it up in different books and read about it, later he told me it was Cerrebellar Ataxia. That was a chock to me and I started to cry when I heard that. But he also told me a few things that made me much happier to hear.

Now several years later I have searched the Net about Cerrebellar Ataxia and found that this disability exists in seven different levels from the lightest to the worsest and according to what he told me I have the lightest level of it. But I also have some different symptoms of this which is, fine motor skills. trouble with my balance and a very annoying and heavy dysfunctional exertional incontinence. This incontinence is still troublesome even if I wear diapers, for example I wake up in the middle of the night with a soaked wet diaper, but I have learnt myself to do something about it that makes it easier to live with. I can use my legs and walk as usaual but I can never run anymore and never write with a pen anymore, I have to write with computers,but I also have also got a mobiliity scooter for my balance problems.

Replies

  • Sam_ScopeSam_Scope Member Posts: 7,732 Disability Gamechanger
    Hi there, I had never heard of this condition but I found the national Ataxia charity site that may be of some help to you.

    Sam
    Scope
    Senior online community officer
  • Sam_ScopeSam_Scope Member Posts: 7,732 Disability Gamechanger
    edited February 2017
    This comment is from @GeoffBosworth195661

    "Hello Diaper Fetishist Welcome I Have ataxia at the other end of scale, Firstly as the neurology sent you to a ataxia specialised hospital. In UK we only have three specialised ataxia professors of which is a great help. I go on a regular bases and have research tests. The tests I have are to try stop the gene genetic decease from continuing.

    Now I understand you have trouble with incontinence that can be solved over night by asking your Dr the company in UK is Coloplast the other is I know of is Coloplast in Denmark. You must ask your Dr for SpeediCath compact if like you said a adult the serial is SpeedCath 28692 It is painless 4x daily last one at night. When you first go toilet after you use a SpeediCath morning ,noon, dinner, night, you will stop having the problem.

    As what you have not said is when after going toilet the bladder is empty. This is not the area what causes the problem it is the next upper chamber where with ataxia have a expanded upper bladder. This area is still full and if not empty you can have urine infections, The SpeediCath to look at is like a thin tube thick as a pen you in screw the top and pull out a smaller tube this comes out altogether. while pulling out it goes nearly three time long telescopic it is lubricated you slowly insert and when it enters the next chambers it starts to empty through tube.

     I a sure you will have no pain or discomfort from it after the upper excess urine is empty you pull out and insert it into the tube you first supplied with. You should be supplied with medic wipes to wipe your self which sterilises the area. You will find you don't go toilet so many times it does work and at night you will find you will be sound a sleep dry. These are disposable with a disposed bag. These are excellent also for children with over active bladder they use mainly at night, please not keep of coffee, and late drink.

    Now you have tiredness you need to ask your Dr about a blood test to see if you need B12 as this is common in ataxia. You can have this done by injection every three months which gives the body a boost to how it should be. Any thing you are not clear please get back good luck."


    Scope
    Senior online community officer
  • Sam_ScopeSam_Scope Member Posts: 7,732 Disability Gamechanger
    Hi @GeoffBosworth195661 I have copied your response in this post.  For future replies, type in the box below and click Post Reply.
    Scope
    Senior online community officer
  • GeoffBosworth195661GeoffBosworth195661 Member Posts: 163 Pioneering
    edited March 2017
    Hi @Sam_Scope Ataxia is a tricky one as the gentleman from Sweden was not given the correct information from the Dr he was seeing. As in this country Neurologist are doing great jobs they can pick up at the back of brain the ataxia, but the procedure in this country is to be sent to a specialised Ataxia Professor.Which we have three one in London one in Sheffield one in Newcastle-upon- Tyne don't be misled if you have ataxia the procedure as NHS should have a regulation manual each departments GPs should have one DRs should have one each as a procedure to follow. Last year when doing a survey around the country it was alarming young Neurology students was not ben taught the full meaning of Ataxia. A consultant must have one but the survey was alarming of how many did not and did not know. Ataxia UK will supply free of charge information on this and web site.  
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