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Type: Posts; User: JAY TEE

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  1. Replies
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    Andy I was formally diagnosed with MND 5yrs ago...

    Andy I was formally diagnosed with MND 5yrs ago and luckily mine all down my left side but can still move left arm and leg a bit. I am in my wheelchair all day. The controls on right so can get out...
  2. Thread: Taste

    by JAY TEE
    Replies
    10
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    1,567

    Christoff, the taste is weird I assume the...

    Christoff, the taste is weird I assume the Riluzole and eye drops and Carbocisteine make it weird as taking it three times a day. My saliva very thick and I am drooling all day. I have a feeding Peg...
  3. Thread: Hi, Im Juan

    by JAY TEE
    Replies
    17
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    2,456

    Juan, having a kip with MND, yes I often have cat...

    Juan, having a kip with MND, yes I often have cat nap in my wheelchair which I am in all day. This I was told is the side effects of all the drugs we are on. If out and about during day I always...
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    3,397

    Doug the Salsa M2 is good chair plenty of power...

    Doug the Salsa M2 is good chair plenty of power and will go up low kerb rises. My MND is all down my left side and the controls very easy. Got good settings for speed my little grandkids like it when...
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    1,969

    Diamond, sorry about your symptoms hope it isn’t...

    Diamond, sorry about your symptoms hope it isn’t brain tumour cancer in brain. The MND can be with you for a while before a formal diagnosis.
    I was formally diagnosed 5yrs ago. Before that I had...
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    2,508

    Debbie, you will find the Salsa M2 ok I have mine...

    Debbie, you will find the Salsa M2 ok I have mine for three years and did have updated seat for it which is very comfortable. The only thing I need is a strap to keep my legs on the footplate. I have...
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    Polly yes agree the Emotional Liability with MND...

    Polly yes agree the Emotional Liability with MND is amazing. I was formally diagnosed five years ago two weeks after my 65th birthday. I have grown up enjoying my classic music and I struggle not to...
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    Gillete sorry you got pain. I was formally...

    Gillete sorry you got pain. I was formally diagnosed with ALS MND in few days time 5yrs ago and was 70 on Saturday. My MND all down my left side. Before diagnosis I had pain in my left hip and just...
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    3,778

    ‘Wheelchair. I have Salsa M2 and the main drive...

    ‘Wheelchair. I have Salsa M2 and the main drive wheels got a good grip. I get over ground and fields well. I have used it few times on cruises to the Med and getting in out boat usually easy. Been on...
  10. Thread: Voice banking.

    by JAY TEE
    Replies
    37
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    5,414

    Jim and all thanks for the update on Voice Five...

    Jim and all thanks for the update on Voice
    Five years ago I downloaded the Speak It app of the internet and loaded it on a good mini iPad my mates brought me, also put it on old mobile phone and...
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    Kev, I needed good car 4yrs ago once on...

    Kev, I needed good car 4yrs ago once on wheelchair. I have Citreon Berlingo diesel automatic. Was able to drive for two years but have surrendered my driving licence now. My carer/wife finds it ok to...
  12. Thread: Riluzole

    by JAY TEE
    Replies
    19
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    3,670

    Admin thanks, my chemistry would not provide my...

    Admin thanks, my chemistry would not provide my Riluzole as said it would cost them £300 for four week pack. Luckily my local hospital provided it and had same update.
  13. Thread: Muscle Loss

    by JAY TEE
    Replies
    5
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    1,491

    Daniel, yes agree there is muscle loss. I...

    Daniel, yes agree there is muscle loss. I formally diagnosed with ALS MND in May 2014 just two days after 65th birthday. Previously always kept myself fit had played lots rugby and had pain in left...
  14. Replies
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    Sarah and all, I had peg fitted three years ago...

    Sarah and all, I had peg fitted three years ago .but can still eat well so long as food mashed. Not having Peg food yet having read through the posts I have learnt a lot. So thanks all for comments. ...
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    Spitfire, I used to sleep on my right side but...

    Spitfire, I used to sleep on my right side but now on my back. My local Council been very good they provided a Hospital bed. This is very comfortable it raises the legs from knee area and the back...
  16. Thread: Rch4

    by JAY TEE
    Replies
    283
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    77,242

    Sportingmac. I am just coming up to 5yrs it will...

    Sportingmac. I am just coming up to 5yrs it will be my 70th birthday in May and was formally diagnosed two days after 65th. My MND just ALS and been on Riluzole and stuff for soliva. I cannot walk...
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    9,149

    Kayleigh, It was a good weekend and we had a new...

    Kayleigh, It was a good weekend and we had a new telly on Friday with a massive screen. The rugby I felt I was back on field playing again and played to long in the front row so assume that’s why got...
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    Lynne, I formally diagnosed coming up 5yrs and...

    Lynne, I formally diagnosed coming up 5yrs and had peg fitted two years ago but only use that few times a week as I can still eat well as long it’s minced up. My saliva very thick and drooling bad. I...
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    Deb I was given Salsa 2 by my local council 3yrs...

    Deb I was given Salsa 2 by my local council 3yrs ago. It is brilliant and I sit in it all day. It will go miles and very easy to control when out and about. I did buy a Citreon Berlingo as that very...
  20. Thread: neck collar

    by JAY TEE
    Replies
    12
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    2,927

    Dave, yes a neck collar does help. My neck is big...

    Dave, yes a neck collar does help. My neck is big as played tight head prop in rugby days. I did have a fall two years ago hurt neck. The therapist got me a metal frame one with chin pad. That not...
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    Jonboy well you have joined good place to find...

    Jonboy well you have joined good place to find everything you need to know about MND. I was also formally diagnosed two weeks after I retired at 65 in May 2014. I cannot walk and talk now but still...
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    32
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    5,419

    Pinkelle, Yes convinced MND switches lots of...

    Pinkelle, Yes convinced MND switches lots of things off. I am often constipated for couple of days and as typing now got stomach pain hope my usual Saturday curry and pint clears me. I have taken two...
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    6
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    1,990

    Andy, Guess what my MND is down my left side....

    Andy, Guess what my MND is down my left side. Formally diagnosed May 2014 and year before I had pain in my left hip and assumed to long in the front row. I did see a Physio and he told me left leg...
  24. Thread: Hair loss

    by JAY TEE
    Replies
    14
    Views
    3,124

    Hair today nail tomorrow Crikey just thought...

    Hair today nail tomorrow
    Crikey just thought my problem nothing. My toe nails growing well and hand nails thicker and quicker, luckily got good chiropodist. As for hair just get usual haircut I...
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    11,342

    David, my care/wife finds it easy hoist me off...

    David, my care/wife finds it easy hoist me off the bed using the riser recliner onto the commode chair and once finished hoist onto the wheelchair it is a Salsa j2. When first had it three years ago...
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