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Thread: 47 years old and just diagnosed with ALS

  1. #1
    Forum Member
    Join Date
    Sep 2018

    47 years old and just diagnosed with ALS

    Hi all.

    Iím Nige, married to Jill.

    Several kids between us.

    Just a normal music and motor sport mad family.

    Until diagnosis 2 months ago.

    Then our world went a little crazy.

    Looking for advice and reassurance that life isnít over.


  2. #2
    Forum Member Boiler68's Avatar
    Join Date
    Feb 2018
    Hello Nige...I'm sorry to hear of your diagnosis. My husband was 49 when he started to have dexterity and balance problems. Diagnosis ALS came approx 2 years later . We have 5 kids between us and the youngest was just 6 then. We too were petrified as we didn't know how we would cope and what the future held. Your lives will change but no, it's not over. It's all about adjusting. Don't get me wrong it is extremely difficult at times and good support is vital from your family and supportive health professionals. We didn't know back then that this was a slow progression but I guess we've been lucky. My husbands main problems now are with his arms and hands. He cannot use them but he can still stand and walk a few steps with help. He mostly uses a powerchair to get around. He does have bulbar issues with slurred speech which is quite bad when he's tired but he can swallow good and eats a normal diet though chopped up small and it takes a while to finish. Refuses to have a peg so I help to fork the food in. He's interested in life, our children, and refuses to be dominated by MND. I get a lot of support and helpful tips on how to manage things from other forum members so I hope your wife (please be kind to her) will join us too at some point. I am fairly new to the forum even though I read posts for years. I think I joined during a huge meltdown which does happen now and again...and it's allowed. I'm sure you will receive a warm welcome and much support if you stay with us.
    Best wishes

  3. #3
    Forum Member
    Join Date
    Jul 2018
    Hi Nige, Welcome, sorry to hear of your diagnosis. For us it came 17/7, and yes its devastating. I just try to take a day at a time.

  4. #4
    Forum Member Barry52's Avatar
    Join Date
    Mar 2012
    Newark on Trent
    Hi Nige and welcome to the forum family.

    Remember that this disease has different rates of progression and symptoms in each patient. We need to adapt and use all the aids to help ease the symptoms. Over recent years the medical professionals have refined treatments such as breathing aids, communication aids and feeding systems . All of this results in extended life scale and improvements in the quality of life.

    Your life is certainly not over and you will read that many of us still holiday and pursue some pleasures by adapting. You say you like music and for me it is my first love after my family. Use the system to register with your local music venues and remember you get 2 tickets for the price of one as your carer goes free. This also applies to cinemas and many outdoor activities. All you need is to show you are receiving benefits.

    We hope to hear from you again and best wishes.

    Iím going to do this even if it kills me!

  5. #5
    Forum Member
    Join Date
    Dec 2017
    Hi Nige
    Sorry you find yourself on here but a very warm welcome. It is natural to think like that, I must admit I was terrible the first few months but the more I read on the forum and social media it gives me hope .

    People live full lives while they can and make many memories . You just have to adapt and have a positive attitude.

    All the best to you and your family

    love Chris

  6. #6
    Forum Member
    Join Date
    Nov 2017
    Sadly welcome, I’m the Mum of Jen who was diagnosed Sept 17 at 33 yrs old and 3 months after having a baby, she also had a 7 yr old, it has been quite fast progression for her with only the use of her right arm/ hand, she has to use a power chair all the time, her speech has deteriorated and we can understand only part of what she says, she’s missed cuddling, bathing playing etc with her baby now 18 months and her daughter is suffering over it. She is strong and has good friends that go to playgroup etc with her so life can carry on not the way it was but adapting to the new one which everyone on here has, as the advice and support is invaluable, good luck on your journey.

  7. #7
    Forum Member Tim-griffiths's Avatar
    Join Date
    Oct 2017
    Lambourn Berkshire england
    Hello Nigel, sorry you have had to join us through such horrible circumstances, wife was diagnosed with bulbar palsy onset ALS in October 2017. The support and advice on the forum has been key to helping. Life isn't over, you need to adjust and family and professional support is invaluable.
    Wishing you and your family good luck on your journey .
    Tim and Mary

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