Page 8 of 8 FirstFirst ... 678
Results 71 to 77 of 77

Thread: new member / single person

  1. #71
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Location
    UK
    Posts
    7,664
    Hi Panniertank,

    Sorry to hear about your fall and obvious lack of confidence following it. Going down curbs is a hard thing to do, maybe two walking poles would be better because they are longer.

    If we are tired we don't perform as well and maybe your muscles were tired as well and you were not concentrating.

    Your other problems won't help but we know it must be very hard for you.

    Love Terry

  2. #72
    Hello Panniertank. I'm really sorry things aren't good for you. You may remember me my husband has the same arthritic condition as you.

    We looked into extra care housing, the cost was horrific. They would not rent us the accommodation we would have had to buy. 295,000 for a flat with poor resale potential and a service charge of 325 a month.
    Who knew you had to be a millionaire to face disability!
    We did manage to get an adapted bungalow with social housing.

    We haven't faced this disease to the bitter end but we do try to anticipate the next hurdle. It seems less overwhelming to take this disease in steps and stages.
    Such as we have a ceiling hoist fitted but hubby isn't quite there with needing it just yet.

    I agree with others you do need a very proactive OT to make sure things are in place.

    One thing our local MND coordinator wants DH to do is attend a day hospice. Not because he's dying but to ensure he gets all kinds of help, which could include emotional support.

    Finally I wouldn't worry too much about finances. My husband's care is paid for by the NHS though Continuing NHS funding. They seem very good at helping people with MND. This is not means tested.

    I hope I don't sound preachy! Like others on here I would just like to help.

    Take care
    Julie.

  3. #73
    Forum Member
    Join Date
    May 2019
    Posts
    32
    Thank you Terry and Julie. I do have a very proactive OT thankfully.

  4. #74
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Location
    UK
    Posts
    7,664
    Hi Panniertank;

    The standard Rollator might not be so good at going down curbs, see what she thinks. The longer special ones would be better that some others have bought. She just might supply one IF IT'S what you need to KEEP safe and KEEP mobile outdoors.

    Love Terry

  5. #75
    Forum Member
    Join Date
    Aug 2019
    Posts
    3
    Dear Panniertank.... i joined the forum today and posted an introduction which you might like to read. I am in a similar situation to yourself and whilst having great friends around me I do not want my home turned into a hospital room. When I cannot get around and need personal care I would rather move out and go somewhere where I can have some care on site. That is how I feel now. I have been to one MND support group and found it very positive and helpful. Is there one near you?
    Eileen

  6. #76
    Forum Member
    Join Date
    May 2019
    Posts
    32
    Hello Scotty. I did read your introduction. I am sorry you have been diagnosed with MND especially as at one stage you were told you definitely didn't have it. I think it is difficult to diagnose especially as there is no specific test for it but the tests done are to eliminate other mimicking conditions. It was interesting that one of your doctors suggested a lumbar puncture. My neurologist has suggested the same but isn't insisting on it. I may be wrong but I think it maybe eliminates/ diagnoses multiple sclerosis.
    Take care.

  7. #77
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Location
    UK
    Posts
    7,664
    Hi Panniertank and Scotty,

    It's just one of the normal tests that most of us have to eliminate other things. They don't give you a diagnosis of Mnd without being pretty certain.

    Love Terry

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •