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Thread: trying to get on

  1. #1
    daze
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    trying to get on

    Hi I don't know where to start. I'd like to call myself a young 32year old man recently diagnosed with mnd. Iam married with a young family. I know what's ahead of me I have two family members with mnd as well. In one hand I say I reached this age with a lovely family I should feel blessed. A lot of younger people have passed away and not done as much in life. But the greed sets in and I want a lot more years. I don't believe in bucket lists I just want to spend time with family and friends. I'm by no means ready to give up. Just want to enjoy my time. Enjoy my old cry now and again. To me that means I haven't given up. Keep the bright side out

  2. #2
    Forum Member Dave K's Avatar
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    Hi Daze...

    Sorry to see you hear. You will get a lot of information on this forum and as I have found out they are a lovely bunch of folk, those in the same boat as you and of course the other side, carers, this is my role.

    Feel free to ask for help or information at any time.

  3. #3
    Forum Member john's Avatar
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    Good morning Daze and welcome. If you have two family members with mnd there is probably very little you do not know about the disease. If you have the same mutation which led to your illness then you will probably follow the same symptoms as they have.
    I don't think there is anything greedy about wanting to have a full life. It should be the right of all of us. Progress is being made in treating mnd and it is thought familial mnd has the best chance of success because of the consistency of the condition.
    Stephen Hawking was 22 when his illness started and he is now in his 70s so it can happen. There was a guy here until recently who had some success in halting the progression of his disease. He had 13 or 14 years with mnd and died from a stomach ulcer bursting recently so arguably not a result of mnd. He has a thread," Fishmate 12 supplements", which you may find interesting. He talked about various supplements he was taking and why he believed they were beneficial. Another source of current patients self experimenting is alstdi forum. This is USA based and has members trying many potential cures and trawling the web for results of recent research.
    Good luck to you in finding something that works for you. Another place to look is another USA site, " patients like me". As the name suggests this has sections dedicated to difference illnesses(in the USA they refer to all mnd conditions as ALS) so if you join that community you will see what people are currently self experimenting with and what success they are having. They are encouraged to fill in logs of their progress so there is some record of what has worked for them.

    John

  4. #4
    Forum Member Dude's Avatar
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    Hi Daze This mnd sucks don't it . I've got nothing more to say cos you must know how it goes. Bucket lists are selfish. Dia DEc 08 mnd pbp 67 years young . Cure coming soon. Take care. Dude x

  5. #5
    Forum Member Terry's Avatar
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    Welcome Daze,

    Many of us people have a good sense of humor and that helps us and others around us to have a better time.

    I would not call you greedy in wanting another thirty years in good health. I thought that I would be still travelling around and healthy like my dad who's close to ninty.

    Sorry to hear of your diagnosis but I guess that you have had a good idea for a while. Not that that makes it any easier.

    Best wishes, Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  6. #6
    Forum Member
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    Welcome Daze

    You have found a place here that can provide much knowledge, support, comfort, and friendship by a great group of people who like yourself do not give up.

    Wishing you and your family all the best in the days ahead.

    CC xox
    .

  7. #7
    daze
    Guest
    Thanks everyone for your comments and support. Sorry to be meeting you here. As my father in law would say you play the cards your dealt. Was thinking of coming on here for the last two months and I'm glad I finally did. At the moment I have it in my left hand and foot. The last couple of months I was just sorting out retirement from work and mortgage stuff. Now that's out of the way I can enjoy Christmas. Hope you are all doing well.

  8. #8
    Forum Member Dvd's Avatar
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    Hi Daze ..Welcone to the forum .. i am quite a newbe on here myself as i am a carer for my best friend who has recently been diagnosed with MND Pulbars Onset .. you will get lots of information if you require from great folk on here ... dvd

  9. #9
    Forum Member Ellie's Avatar
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    Welcome Daze,

    Tough on your whole family to have the familial form of MND. It must have still been an awful shock to get the diagnosis. FWIW great advances are being made in understanding of the inherited forms of the disease.
    Good that work is sorted. I was extremely lucky to have mortgage protection which paid off my mortgage, post diagnosis.

    Take care,
    Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  10. #10
    daze
    Guest
    Yeah I have serious illness cover as well so all sorted on that front thankfully.

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