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Thread: I've been recently diagnosed.

  1. #11
    Forum Member
    Join Date
    Oct 2018
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    7
    Thank you to all of you who replied to my post. There were some very encouraging words and I will go to bed shortly with the comfort of knowing that I have some new friends out there. Thanks again for all your support. Goodnight and God bless. Steve

  2. #12
    Forum Member Boiler68's Avatar
    Join Date
    Feb 2018
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    75
    Hello Steve..welcome to the forum. It's particularly heartbreaking when there are young children involved....BUT you may be surprised at how tough they are! Our girls were 19, 14, 9 and 6 when their daddy was diagnosed - in 2008. We live with it and manage as best we can but my husband absolutely will not be defined by it and gets up with a purpose every day. He has a slow progression but we did not know at the time in 2008 how long he had left with his girls and like you thought he would miss all the milestones - proms, graduations, grandchildren etc. So we give thanks every day. It is difficult and we've had some really dark days but we pull through. I wish you mental strength and positivity on hopefully a slow journey. This forum is a massive source of support so stay with us. Best wishes to you.

    Boiler x

  3. #13
    Forum Member Tim-griffiths's Avatar
    Join Date
    Oct 2017
    Location
    Lambourn Berkshire england
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    78
    Hi Steve.
    Welcome to the forum, although I'm deeply sorry you had to find this community due to your diagnosis. My wife, Mary, was diagnosed with bulbar palsy onset ALS last October, three weeks after her 62nd birthday. I'm her full time carer and have been for the past several months due to the only family we have live 5 hours away in Cornwall.
    You will find a lot of advice and understanding here from other membrrs, who are either going through, gone through, or who are caring for other suffers of this horrible disease. I think the best advice I got initially was," stay strong and positive, nobody can give a time span, Steven Hawkins was given two to three years and survived for 50 " hopefully you have strong family support and you get a good support team in place. From a sufferers point, I have only a limited idea of the mental anguish they are going through, but as a carer I think I can say that I'm experiencing the physical, mental and emotional pressure too.
    Mary, now cannot speak so communication is scrawled on paper, on her iPad with a app called easy speak, and by a thumbs up or down. She has limited mobility and mostly in a wheelchair, from a personal point of view I think her deterioration has been rapid, but the people I ask who we have supporting us seem happy with her, her body mass have gone up 18% since January, and together we will do the best we can each day, try to be positive and look forward to the future with hope and optimism.
    Stay strong and positive, watch your daughter grow up and enjoy every moment you possibly can with family and friends, hopefully for years to come.
    Tim and Mary

  4. #14
    Forum Member
    Join Date
    Oct 2018
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    7
    Thank you for sending me such a strong message of hope. It's good to know you are out there fighting this. My best regards to you husband. Thanks Again, Steve

  5. #15
    Forum Member
    Join Date
    Sep 2018
    Posts
    11
    Hi Steve, so sorry to hear about your diagnosis. You're doing the right things by focussing on the positives. I have tried many things including Rick Simpson oil from day 1, stem cell treatment twice which I feel was of no use, FMT program and now Edaravone. Give yourself a chance and try it all. The stem cell without anyone getting any positive results I would ignore and even go so far as to call it a scam. I've searched a lot of companies and none have proved any level of success. Good luck and hang in there. Jerry

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