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Type: Posts; User: JAY TEE

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  1. Replies
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    498

    Christie, yes there are problems with MND and our...

    Christie, yes there are problems with MND and our food. I do have bit peg food but can still manage to eat my food mashed up. I do have bad constipation and sometimes up to five days.
    I have stomach...
  2. Thread: Advice needed

    by JAY TEE
    Replies
    10
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    1,627

    rubray, the thick saliva is big problem. I have...

    rubray, the thick saliva is big problem. I have LSU sucker Lamdal Sucker Unit which I use before eating and before clean mouth before taking Carbocisteine and eye drops. I also have a Clearway unit...
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    748

    Tim, luckily I had no hair loss on run up to ...

    Tim, luckily I had no hair loss on run up to Christmas. I grew my beard and the young grandkids liked me be Father Christmas.
  4. Thread: Christmas 2019

    by JAY TEE
    Replies
    14
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    2,526

    Ellie. Christmas a good time for me. It’s 5yrs...

    Ellie. Christmas a good time for me. It’s 5yrs since I last cooked the family meal for 16 of us. Lookily one of my sons doing the meal for us and my 10yr old granddaughter will do my Peg feed. Hope...
  5. Replies
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    2,975

    Christie, I have been lucky my MND down my left...

    Christie, I have been lucky my MND down my left side and now cannot walk and talk. Luckily right side ok. I was given a Salsa M2 wheelchair by Local Council Dudley in the Black Country. I have had...
  6. Replies
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    3,551

    Mick, glad you bought this problem up. I am a bit...

    Mick, glad you bought this problem up. I am a bit the same. I had my Peg fitted three years ago but I still manage my food if mashed up. But in last 18 months have bad constipation can be three to...
  7. Replies
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    1,645

    Hello Jude yes I at sit to stand hoist is very...

    Hello Jude yes I at sit to stand hoist is very easy to use, I am picked off the bed put onto the commode chair into bathroom after toilet shower put my pants on and then hoisted up pants and trousers...
  8. Replies
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    3,107

    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...
  9. Thread: Taste

    by JAY TEE
    Replies
    10
    Views
    2,246

    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...
  10. Thread: Hi, Im Juan

    by JAY TEE
    Replies
    17
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    3,516

    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...
  11. Replies
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    6,716

    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...
  12. Replies
    19
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    5,363

    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...
  13. Replies
    12
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    5,062

    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...
  14. Replies
    29
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    5,320

    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...
  15. Replies
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    3,995

    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...
  16. Replies
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    7,120

    ‘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...
  17. Thread: Voice banking.

    by JAY TEE
    Replies
    37
    Views
    6,850

    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...
  18. Replies
    45
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    11,951

    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...
  19. Thread: Riluzole

    by JAY TEE
    Replies
    19
    Views
    6,611

    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.
  20. Thread: Muscle Loss

    by JAY TEE
    Replies
    5
    Views
    1,729

    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...
  21. Replies
    63
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    11,466

    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. ...
  22. Replies
    28
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    6,868

    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...
  23. Thread: Rch4

    by JAY TEE
    Replies
    400
    Views
    111,970

    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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    57
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    11,196

    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...
  25. Replies
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    13,871

    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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