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PARKINSONS PLUS SYNDROME

  • 16-09-2008 8:00am
    #1
    Happiness
    Closed Accounts Posts: 8 ✭


    Anyone know about this out there? I've been four years searching for a diagnosis. and I'v researched it myself, and believe it's possibly true.
    There's about 20 Neurologists in the whole of Ireland. Ii've seen 6 of them.The Consultant I see now is recently agreeing its a probable diagnosis; - PSP- Prrogressive Subnuclear Palsy.I don't want it. It's no fun.I'm not good at being ill. I've worked and travelled all over the world.
    I've never missed work due to illness (longterm) although I got fierce bouts of depression in New York many years ago, soldier on and on and on...This PSP has thrown me. I hate it. Has anyone else got it? Or know someone with it? Come across it or loooked after some one with it?
    It's not very common in people my age < 50. I'm joined a support group, and have met one person same age as me. She has great neighbours for support. I don't. My own family want me to go to a nursing home. I say "you first". Please contact me if you have any suggestions.Thanks.


Comments

  • #2
    franbemadd
    Registered Users, Registered Users 2 Posts: 15 ✭franbemadd


    Why should you go to a nursing home? Can you get around? There is a grant available to enable you to adapt your accommodation, home help, meals on wheels, get the GP to refer you to the Occupational therapist, who can give you small tools, get referred for counselling, (Counselling is the best thing to deal with family issues.) think about getting the dog trained to do some help. (The guide dog people might be able to advise) If you can afford it, Lidl and Aldi both sell disability aids, watch out for them. In any case, think about sheltered accommodation before a nursing home. Is the Sue Ryder foundation in Cork? Or the City council housing department might be able to assist with a swap to suitable housing? Also, try to make friend with some of the neighbours. You'd be surprised how people don't know we need them, till we ask. If someone would do your shopping, that would be a big help. Could the Parish Priest or Clergyman help? Perhaps there is a Parish welfare/care committee.

    I hope this helps. I was diagnosed with PD 4 years ago at age 56, and am doing well.


  • #3
    LegacyUser
    Registered Users, Registered Users 2 Posts: 166,026 ✭✭✭✭LegacyUser


    Hi, I dont know about real life support apart from whats been suggested but there is an online forum based in UK re progressive supranuclear palsy: its www.pspeur.org


This discussion has been closed.
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