Poet Chistopher Robin
Distinguished member
- Joined
- Mar 17, 2012
- Messages
- 147
- Reason
- PALS
- Diagnosis
- 06/2011
- Country
- UK
- State
- Tyne and Wear
- City
- Newcastle upon Tyne
Update on my health, I’m just managing to type with the left hand, the right side is near totally gone the right hand is useless, the right foot keeps catching the ground. My speech is really very poor too, and its getting more difficult to eat.
I also get severe problems through the night with breathing and wake every morning with locked muscles in the legs and fall over freely feels like I could break a bone so easily. My neck feels like I’ve been in an extreme car smash and have severe whip lash and I’m tired round the clock
I need a peg feed, have a neck collar, they have fitted me with a shield for the right hand to stop the fingers from crossing over, and a similar thing for my right foot to stop my toes from hitting the deck, the electric wheel chair is now here, and they loaned me a vmax that will talk for me to some extent.
Other than this I’m still okay but fed up of having to ask Jude to do so much for me, as also constantly having to repeat myself to her, I would not wish this on my worst enemy.
Jude took me out to town the first time out in the electric wheel chair five gears and even five was dead slow stop on the open path until they speeded it up.
The metro train (local underground) was really scary getting on and off, it needs to come off backwards apparently I got stuck trying this (there was a right crowd on the metro) and a gent pulled me free thankfully.
People were literally jumping out of my road, I nearly wrecked the Debenhams store too.
Getting back home my leather coat sleeve got caught on the letter box and its now ripped beyond repair. I feared ever going in the damn thing again but we went to the coast today practically trouble free
But on top of it all I’m still positive
I also get severe problems through the night with breathing and wake every morning with locked muscles in the legs and fall over freely feels like I could break a bone so easily. My neck feels like I’ve been in an extreme car smash and have severe whip lash and I’m tired round the clock
I need a peg feed, have a neck collar, they have fitted me with a shield for the right hand to stop the fingers from crossing over, and a similar thing for my right foot to stop my toes from hitting the deck, the electric wheel chair is now here, and they loaned me a vmax that will talk for me to some extent.
Other than this I’m still okay but fed up of having to ask Jude to do so much for me, as also constantly having to repeat myself to her, I would not wish this on my worst enemy.
Jude took me out to town the first time out in the electric wheel chair five gears and even five was dead slow stop on the open path until they speeded it up.
The metro train (local underground) was really scary getting on and off, it needs to come off backwards apparently I got stuck trying this (there was a right crowd on the metro) and a gent pulled me free thankfully.
People were literally jumping out of my road, I nearly wrecked the Debenhams store too.
Getting back home my leather coat sleeve got caught on the letter box and its now ripped beyond repair. I feared ever going in the damn thing again but we went to the coast today practically trouble free
But on top of it all I’m still positive