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Thread: Hello!

  1. #31
    Forum Member Lynne K's Avatar
    Join Date
    Nov 2017
    Hi Cruisegirl. So sorry that you've had to join us on this journey. But I agree with everybody else that after the initial shock and distress you will be able to be more grounded. Positive thinking certainly helps. Take your diagnosis as a lucky break. It could have been a lot worse.

    I first started losing my ballance 4 or 5 years ago but did not seek out a cause until other symptoms started. About 18 months to 2 years ago I talked my GP. Cut to about November last year I was told that I have MND but the neurologist said that she couldn't give a sub category but that my degeneration must be slow if it started so long ago. I was hoping to be told that I have PLS the slowest form of the desease, but no. I was told about a month ago (after me probing my neurologist with direct questions). She said it's ALS but still slow degeneration.

    None of us know exactly what the future holds but I'm not going to waste any of that time feeling sorry for myself. I have 4 children, several grandchildren and my first great grand child due in about 5 weeks. So things to look forward to. I guess this is my coping strategy to look forward and plan, plan and more planning.

    I'm still walking with a tri-walker but it's become risky so only for short distances, and indoors. I have a manual chair which has been used a little but my local services have agreed to give me a powered wheelchair. I'm looking forward to getting it. I never expected that I'd be happy about getting a wheelchair. But if it can enable me to have some independance and less falls (I've had dozens) then I'll grab it with both (all be it dodgy) hands.

    You have come to the right place. This site has been very helpful to me and I hope that you find it so too. Take care. Lynne

  2. #32
    Forum Member
    Join Date
    May 2018
    Hi Jo,
    Lovely to hear from you. I am glad the wedding plans are going well. It must be really exciting!

    I am not sure if you have been referred to an MND team. There was a specialist nurse present when I was diagnosed and she came round to the house to see us a few days later. OT and the physio have also been to the house. They were all really sensitive and let me go at my own pace and they had really good suggestions for equipment and adaptions to make life easier and safer! I found it easier to talk away from the hospital and they gave us contact numbers if me or my husband needed to talk further. I think they must work closely with my GP who has been in touch. I am not sure who you would phone to get this help but I am finding it invaluable and I am sure you would too.

    Is the wedding soon? I am sure you will have a fantastic day. Fingers crossed for sunshine .
    Take Care,
    Love Debbie xx

  3. #33
    Hi Debbie!

    Well we are up in Scotland for the wedding on Saturday! After I last messaged you I got on to my Neurologists and have managed to get sorted now thankfully. I'm seeing the team at Sheffield under the Professor who diagnosed me and my surgery has had a call to get me sorted with physio and an OT visit. I feel so much better knowing that's all starting to fall into place as it's already a month since my diagnosis and I felt forgotten about. I am a positive person by nature but that did make me feel a bit down and frustrated I have to say. They have said they will prescribe Riluzole, have you started taking it? If so has it made you feel any different?

    Love Jo xx

  4. #34
    Forum Member Barry52's Avatar
    Join Date
    Mar 2012
    Newark on Trent
    Hi Jo,

    You will get great care at Sheffield under Professor MacDermott. The multi discipline team under Teresa are very good.

    Best wishes,
    Iím going to do this even if it kills me!

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