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  1. #71
    Forum Member Terry's Avatar
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    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
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    May 2019
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    Thank you Terry and Julie. I do have a very proactive OT thankfully.

  4. #74
    Forum Member Terry's Avatar
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    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
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    Aug 2019
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    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
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    May 2019
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    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
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    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

  8. #78
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    May 2019
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    I am sorry. I am just offloading and probably repeating myself. It is over 3 weeks since my last fall. I have lost all confidence to get out of the house, especially walking. Apart from doing essential things like driving to the supermarket to do my weekly food shop, I have largely been housebound and I am incredibly bored. My brain and concentration seems to have changed in recent years so I can't concentrate on watching tv or reading books. And then at night I have my chronic insomnia to deal with. If my life is this bad at the early stages of MND I just don't know how I will cope as I become seriously disabled. I said in previous posts that I sometimes had suicidal thoughts and/or wished I would just die peacefully in my sleep rather than endure the prognosis. But now I am feeling afraid of death;- I value life and I am devestated how much it has already being ruined. I am only 56.
    I have asked my clinic about walking frames etc, as a number of you have suggested, but for a number of reasons it is going to take a few weeks to sort out. I feel so isolated and alone and am now really struggling with life at the early stages of MND. I just don't know how I am going to cope in the future as this condition progresses.
    Last year I was on early retirement and for a number of reasons I was holding back my spending. I often beat myself up that I was wasting the year but on reflection I achieved so much compared to the nearly 12 months since my MND symptoms started seriously!!

  9. #79
    Forum Member Lynne K's Avatar
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    Nov 2017
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    You ought get an OT (Occupational Therapist), Physio, Speech Therapist, maybe a Social Worker and soon Wheelchair Services to give you at first a manual wheelchair. OT can get you aids for at home. Physio can get you walking aids ie walkers to keep you safe when walking whilst you can. If you don't have any of these services yet ring MNDA for advice. X
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  10. #80
    Forum Member Gillette's Avatar
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    Mar 2019
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    Hi Pannier Tank,

    Sorry that you are feeling so down. Have you asked at your MND clinic for a referral to the Community Palliative Care Team? Alternatively, you could ask your GP for a referral. Once they have been in contact things should start happening in terms of equipment and so on.

    Good luck.
    Dina


    Trying to keep positive, but not always managing.

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