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Type: Posts; User: JAY TEE

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  1. Replies
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    Lizzie, sorry to say welcome but on this site you...

    Lizzie, sorry to say welcome but on this site you can find out anything you need to know. iThe one thing I regret not doing when formally diagnosed with MND in May 2014 was to record my voice to use...
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    Biden, yes emotional level can be hard. I...

    Biden, yes emotional level can be hard. I formally diagnosed with MND coming up 6yrs ago. My emotions level is high but only when listening to my classical music favourites. I had brilliant 70th...
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    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...
  4. Thread: Advice needed

    by JAY TEE
    Replies
    20
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    3,645

    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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    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.
  6. Thread: Christmas 2019

    by JAY TEE
    Replies
    14
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    3,288

    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...
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    3,809

    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...
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    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...
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    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...
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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...
  11. Thread: Taste

    by JAY TEE
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    2,331

    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...
  12. Thread: Hi, Im Juan

    by JAY TEE
    Replies
    17
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    3,659

    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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    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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    5,691

    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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    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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    ‘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...
  19. Thread: Voice banking.

    by JAY TEE
    Replies
    37
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    7,148

    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...
  21. Thread: Riluzole

    by JAY TEE
    Replies
    19
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    7,466

    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.
  22. Thread: Muscle Loss

    by JAY TEE
    Replies
    5
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    1,782

    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...
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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...
  25. Thread: Rch4

    by JAY TEE
    Replies
    400
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    116,150

    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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