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Thread: Diagnosed last week.

  1. #1
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    Diagnosed last week.

    Hi, Iíve been diagnosed with mnd (high percentage likelihood, going through tests just in case itís something else) 3 days ago, symptoms for six months. Onset in left hand which I can still use just about,and the twitches have finally started moving up the arm.
    I guess Iíd like to say Hi 😃 and ask if there are any useful tips to know.. Iím going to bank my voice, and swimming/aqua aerobics seem to improve function a lot, so I shall do that a lot. I have an enormously supportive partner and family, but also, sadly, a ten year old child.
    So anyway, hello x just about getting over the shock now..

  2. #2
    Forum Member Barry52's Avatar
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    Hello and welcome catsparkle,

    You appear to have a positive outlook and that will help you greatly in coping with life with MND, assuming the diagnosis is confirmed and I hope that isn’t the case. Your plan to bank your voice is sound and I find gentle exercise helps relieve spasticity. I also find swimming a good form of exercise although getting changed twice is a hassle.
    Try to stay one step ahead if you are using the services available as they tend to be slow but if you want advice then this forum has a wealth of experience.

    Best wishes,
    Barry
    Life is a journey, not a destination.

  3. #3
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    Welcome Catsparkle

    You found the right place for great advice, knowledge, and support by forum members here that truly understand what you, and your family are experiencing.

    Wishing you the very best.

    CCxx
    .

  4. #4
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    With sadness I welcome you. My heart goes out to you having a small child, my daughter was diagnosed last September experiecing symptoms a few months after having her second child, she also had 7 year old daughter. We haven’t and never will get used to this happening. The MND nurse came with a good pack and went through it with her (the 7year old) it explains all about what it is and what it does in terms they can understand. Good luck

  5. #5
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    Hi catsparkle,
    Glad to hear you have a positive attitude to your horrid diagnosis, that will help a great deal, if you do start getting down ( hopefully never ), and cry for no reason ie: suffer from emotional liability, see if you can get your doctor to prescribe citalopram it's helped my wife a great deal. It's good to have a caring family too, but make sure they also care for themselves.
    All the best and take care
    Tim and Mary

  6. #6
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    Quote Originally Posted by Jaxx View Post
    With sadness I welcome you. My heart goes out to you having a small child, my daughter was diagnosed last September experiecing symptoms a few months after having her second child, she also had 7 year old daughter. We havenít and never will get used to this happening. The MND nurse came with a good pack and went through it with her (the 7year old) it explains all about what it is and what it does in terms they can understand. Good luck
    Thankyou xx I'm so sorry for your family, we've all found this heartbreaking. I'm glad to know there is support in sharing the diagnosis and impact. We're delaying explaining the shortened lifespan until the exclusion tests have come back in, I've felt in a nomansland this past week with a partial diagnosis. A strange disease.

  7. #7
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    Thankyou. xx fortunately (?) I was already diagnosed with anxiety, so have had the rather sedating properties of my medication. I've told my family that they also have to join in the bucket list as my daughter should learn that her dreams and those of others are as important. And that my partner is absolutely not allowed to drop everything and look after me, particularly as at the moment I've only got a dodgy hand!
    All the best to you both xx

  8. #8
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    Thankyou Barry. x I'm a bit lost as to the services available, but I imagine it will get clearer if my MRI comes back clear of non MND things. All the best to you.

  9. #9
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    Hi Catsparkle
    Welcome to the forum . I hope that the diagnosis comes back as something else, but you seem to have a positive attitude which helps. First few months you are in a spin but things fall into place eventually.

    Keep us informed when you get the results . You will get great help and support from this forum
    Love Chris

  10. #10
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    I hope you have got something else, but obviously you are preparing for the worst. MND is a rubbish disease to get, but I find it particularly sad when younger people who have young children get it. One grain of comfort - it seems that the disease has a slower progression in young people, so that is something to think about. Take care xxx

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