Work life?

Hi all,

Just interested in knowing who is still working & if not when did you have to stop?

just looking for advice on what to do next after having to stop work due to it getting too much of a struggle.

He was working on a building site & it was getting difficult for him everyday. He has to use a stick to get around now. He struggles with his balance, & tripping up and he's often fallen over.

He was signed off for two months at the start of august & that's when he decided he wouldn't be returning to work. We have a form for PIP (personal independence payment) just getting round to it.

my partner is 24 years old, diagnosed 2 years ago even though he noticed changes in his walking a year or so before.

Would like to hear other people's experiences?



7 Replies

  • 45 and recently diagnosed - still walking without aides

    Work situation has not changed - government job behind a desk

    It would be different if job was labour intensive

    It is all new to me, but initial interview with the professor

    He said probably walking sticks in 10 years

    All the best for the future


  • Hi Nicole,

    The problem is we are all different and it depends on the type of work one does. I was able to work until I retired at 65 but I worked mostly at my desk in an office. I couldn't have done a manual job, especially in a dangerous environment like a building site much after 60 when I started using a walking stick. That was nine years after I was first diagnosed with AMN.

    I think your partner's best option is to try to find a job where he can be seated most of the time.

    Good luck,


  • Hi Nicole,

  • Hi Nicole,

    I was diagnosed when I was 37 after my brother. We both have Addison's.

    At the time, I was a professional singer and eventually went back to work at an investment bank. I always had burning pain in the soles of my feet along with imbalance and fatigue.

    I was treated at a chronic pain clinic and went on long term disability when I was 45.

    I am now 51 and have been walking with a cane for 9 years. My brother uses a wheelchair.

    I still have pain and fatigue but I am adamant on maintaining my health and independence.

    Seriously considering getting a scooter since my shoulders are not up to the task for a wheelchair. I regularly go to the gym and I am quite flexible which had helped the spasticity. I limit my medication (Gabapentin and Baclofen) for evening use only.

    One thing I've learned on these forums is that we are all different but we are not alone.

    I've learned so much from others which has been a positive influence in my life.

    I wish you and your partner the very best.


  • Hi guys.

    Thanks for the reply.

    I agree yes, everybody is different. I mean, the line of work he was doing was dangerous, with him having numerous falls & tripping up frequently.

    We just want to decide what's best for him really. He doesn't want to not work.

    There's choices for him & its entirely up to him what he wants to do. I just want to be there for him as much as i can no matter what he decides.

    Thanks anyway for your advice.

    appreciate it.

    Take care !

  • Worked as an industrial Blacksmith for 18 years. The last 10 with this disease. Retired at 40. I wanted to walk out on my own. Pat USA

  • work from home. cannot walk.

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