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Type: Posts; User: JAY TEE

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  1. A Drink, guess what today formally diagnosed with...

    A Drink, guess what today formally diagnosed with MND six years ago. I am naughty I have 1 pint a night. I am not religious and only pray for Enville Ginger might have two today as it’s hot as well....
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    Mathew , well I struggle as well to swallow the...

    Mathew , well I struggle as well to swallow the Riluzole and the Lansoprazole tablets. The best way to try is put the Riluzole on a teaspoon with drop of water and it dissolves then suck on on tongue...
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    Sarah, it is difficult to get some of us out of...

    Sarah, it is difficult to get some of us out of bed. I can still use arm on right side. I use a sit to stand hoist as have ability to sit up on my bed as it full hospitable bed. I can still pull...
  4. Thread: Please help

    by JAY TEE
    Replies
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    Sarah, your MND does effect various things....

    Sarah, your MND does effect various things. Swallowing can be difficult and lots drooling saliva. Also you get pins needles sensitive acts in my case all down my left arm. I have no speech anymore...
  5. Thread: Hi

    by JAY TEE
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    Diddly hello you can find out a lot on this site....

    Diddly hello you can find out a lot on this site.
    I am six years now with MND all down my left side and no speech.
    Getting around I used Zimmer frame for few years. But now once out of bed I am put...
  6. John. The MND onward issue varies to all of us....

    John. The MND onward issue varies to all of us. Me formally diagnosed May 2014 ALS MND. My onfall did start a year before I pain in left hip. Now all down left side in left arm and cannot walk and...
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    John yes think others might have tingling. My MND...

    John yes think others might have tingling. My MND is all down my left side. Formally diagnosed May 2014. I have pins needles sensation in left arm and leg. I also buzzing in left ear mind do play my...
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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...
  11. Thread: Advice needed

    by JAY TEE
    Replies
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    4,456

    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.
  13. Thread: Christmas 2019

    by JAY TEE
    Replies
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    4,389

    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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    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...
  18. Thread: Taste

    by JAY TEE
    Replies
    10
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    2,495

    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...
  19. Thread: Hi, Im Juan

    by JAY TEE
    Replies
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    3,897

    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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    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...
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