Danijela
Senior member
- Joined
- Dec 3, 2008
- Messages
- 667
- Reason
- PALS
- Diagnosis
- 11/2008
- Country
- UK
- State
- UK
- City
- Bolton
Hi All,
I am 36 years old with a partner who is 41 and has been diagnosed with ALS (upper limb onset) two weeks ago. He noticed weakness in left hand while playing bass approx 1 year ago and after a series of tests over the oncoming months he was officially diagnosed at the specialist ALS clinic (they call them MND clinics here) in Manchester, UK. In this post I would like to ask for some practical advice with regards to continuing work post ALS diagnosis. I understand that for many people the ALS comes at the time when they are considering retirement so they may take an early retirement, go part time and so on.
My partner works with computers (data analyst) and his work is very important to him. I would be glad to hear any experiences about working following ALS diagnosis, how you coped, adjustments you had to make in the workplace, practical advice on equipment that someone with upper limb onset may require to continue working (only his left hand is affected at the moment and he can still use keyboard and mouse) so that we can inform the Occupational Therapists in his work place of what may be required in the future. I have read a few reports about the gap between the needs arising and the mechanisms of support being put in place, so we are both trying to be pro-active. We are aware that symptoms can vary and develop in the unexpected ways and that one has to play it by ear, but still it would be good to hear other people's experiences of continuing working post ALS diagnosis even in unpaid/voluntary capacity.
I found advice on hand splints very useful for example, and he will consider purchasing some, so thanks for that one forum! Danijela
I am 36 years old with a partner who is 41 and has been diagnosed with ALS (upper limb onset) two weeks ago. He noticed weakness in left hand while playing bass approx 1 year ago and after a series of tests over the oncoming months he was officially diagnosed at the specialist ALS clinic (they call them MND clinics here) in Manchester, UK. In this post I would like to ask for some practical advice with regards to continuing work post ALS diagnosis. I understand that for many people the ALS comes at the time when they are considering retirement so they may take an early retirement, go part time and so on.
My partner works with computers (data analyst) and his work is very important to him. I would be glad to hear any experiences about working following ALS diagnosis, how you coped, adjustments you had to make in the workplace, practical advice on equipment that someone with upper limb onset may require to continue working (only his left hand is affected at the moment and he can still use keyboard and mouse) so that we can inform the Occupational Therapists in his work place of what may be required in the future. I have read a few reports about the gap between the needs arising and the mechanisms of support being put in place, so we are both trying to be pro-active. We are aware that symptoms can vary and develop in the unexpected ways and that one has to play it by ear, but still it would be good to hear other people's experiences of continuing working post ALS diagnosis even in unpaid/voluntary capacity.
I found advice on hand splints very useful for example, and he will consider purchasing some, so thanks for that one forum! Danijela