So I have been using this forum for reference for several months now but have finally decided to reach out and write my first post.
My husband has recently been diagnosed with MND, aged 58. I am 36. We have 1 child together (age 8) and 5 children collectively. My husbands symptoms started in November last year in his left hand. We thought it was carpal tunnel or a trapped nerve until May, when he saw a neurologist and MND was first mentioned.
Diagnosis came in September, by which point he had lost most use of his left hand and was beginning to feel unsteady on his feet at times. Which is pretty much where we are now. He was a carpenter but now struggles to even put a screw in a wall. Thankfully he is in a managerial position so is still working, although managing the London Underground can be challenging at times.
We haven't seen any OT or physio yet, although the referral has been sent. He was started on Riluzole at diagnosis a month ago and has been taking CBD oil since May. He is very pragmatic and doesn't complain or get overwhelmed. I, meanwhile, am very good at both!
We haven't really told anyone yet and keeping it a secret feels like a weight to me, but then other peoples sadness and worry feels like a weight too, so I don't know what to do. It is difficult when people ask a lot of questions because I don't know what to tell them.
I work 3 days and am at university 2 days as well as having 2 kids at home. I am struggling to concentrate or even think straight. I feel like it is all too much to manage but I don't know what I can do.
Anyway, that is probably about all there is to say. I don't suppose there are any good answers.
If anyone is in the Essex/London border area (Epping Forest district or nearby) it would be great to connect.
Thank you and love to all xxxx
My husband has recently been diagnosed with MND, aged 58. I am 36. We have 1 child together (age 8) and 5 children collectively. My husbands symptoms started in November last year in his left hand. We thought it was carpal tunnel or a trapped nerve until May, when he saw a neurologist and MND was first mentioned.
Diagnosis came in September, by which point he had lost most use of his left hand and was beginning to feel unsteady on his feet at times. Which is pretty much where we are now. He was a carpenter but now struggles to even put a screw in a wall. Thankfully he is in a managerial position so is still working, although managing the London Underground can be challenging at times.
We haven't seen any OT or physio yet, although the referral has been sent. He was started on Riluzole at diagnosis a month ago and has been taking CBD oil since May. He is very pragmatic and doesn't complain or get overwhelmed. I, meanwhile, am very good at both!
We haven't really told anyone yet and keeping it a secret feels like a weight to me, but then other peoples sadness and worry feels like a weight too, so I don't know what to do. It is difficult when people ask a lot of questions because I don't know what to tell them.
I work 3 days and am at university 2 days as well as having 2 kids at home. I am struggling to concentrate or even think straight. I feel like it is all too much to manage but I don't know what I can do.
Anyway, that is probably about all there is to say. I don't suppose there are any good answers.
If anyone is in the Essex/London border area (Epping Forest district or nearby) it would be great to connect.
Thank you and love to all xxxx
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