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  • #155524
    Newcastle Tubular aggregate myopathy

    :new: Hi – im 27 year old female from Newcastle, ive had an unknowen form of MD since birth and recently being diagnosed with Storkmorken Sydrome linked to tubular aggregate myopathy, that I can currently walk but it is getting harder and harder and i find it hard to socialise is anyone in a similar situation.
    Im also trying to get water physio in a hyro pool but its so expensive !

    Posts: 0
    Joined: 31/03/2018
    Reply To: Newcastle Tubular aggregate myopathy

    Hello and welcome Ash, I am glad you have joined us. A complicated picture indeed for you but clearly at the moment you are mostly concerned about your walking and getting some hydro therapy support. There may be others on here who can help so much more than I, but may I ask a couple of questions? Firstly, are you claiming PIP/DLA? if not now would be a good time. Would you be able to tell us more about your physiotherapy support in your area, and what you are getting sat the moment. Perhaps they may be able to help you with hydrotherapy. Have you got the Occupational Therapist involved in your care? perhaps they may be able to help you. Are you using any walking aids at the moment, or are you still able to move without them? The neurology people in Newcastle have an excellent reputation. What advice have they give you about your mobility? Finally, other than the hydro therapy what other forms of exercise do you do to keep yourself walking?
    I am sorry that there are so many questions but it will help others on here to better understand your position.


    So many love songs, so little love.

    embayweather embayweather
    Posts: 8
    Joined: 02/11/2015
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