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  1. Thread: Eye Twitch

    by ian
    Replies
    5
    Views
    2,966

    I had this too it was just muscle fasiculatioons...

    I had this too it was just muscle fasiculatioons I seldom get it now
    Regards
    Ian
  2. Thread: runny nose

    by ian
    Replies
    8
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    5,813

    I have familial ALS and the speech and mouth...

    I have familial ALS and the speech and mouth difficulties have come on late. I had dry mouth for two years but my nose runs like a tap turned on every tiime I sit up.had to have someone to hold a...
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    8,380

    hi Pete, I managed very well on the test, it was...

    hi Pete,
    I managed very well on the test, it was the couple of weeks after I got my car that my left foot forgot what it was doing.
  4. Replies
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    8,380

    If you are right handed instinct can give you...

    If you are right handed instinct can give you some very hairy momemts if not worse. So try and get a few driving lessons from someone with an adapted car.
  5. Replies
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    9,926

    Before you spend time and money on chargers or...

    Before you spend time and money on chargers or batteries get the scooter and charger checked out. It could be any of them. It would be very expensive to change all three to find it was last on the...
  6. Replies
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    13,151

    I now have to take my medications via my PEG. ...

    I now have to take my medications via my PEG. The new tabs seem to have a coating that blocks the valve to the tube. Anyone have any ideas how to deal with this?


    Ian
  7. Replies
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    13,151

    If you have difficulty swallowing don't let the...

    If you have difficulty swallowing don't let the tablet start to dissolve in the mouth or it wil anesthetise the mouth.

    Ian
  8. Replies
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    5,383

    Forget abbout chair neck supports. Get one that...

    Forget abbout chair neck supports. Get one that will help in any situation. If your OT cannot help get them to refer your father to Orthotics at your local hospital. My OT gave me a temporary...
  9. Thread: Eating alone

    by ian
    Replies
    19
    Views
    16,741

    I had my PEG put in on June 22nd. I no longer...

    I had my PEG put in on June 22nd. I no longer feel hungry and can sit with others whilst they eat.I sometimes fancy what tbey have but the thought of choking soon overcomes my urges.
    Like this does...
  10. Thread: PEG or no PEG

    by ian
    Replies
    45
    Views
    30,870

    Hi KS, Like Ellie I have had a PEG fitted...

    Hi KS,

    Like Ellie I have had a PEG fitted early for the ssame reasons.
    Op was simple and conscious all the time. Took a couple of weeks to settle down to the feeding/toiletting regime but I...
  11. Thread: Pirelli

    by ian
    Replies
    12
    Views
    6,960

    Hi Rory, Didn't see you in the top 30 at the...

    Hi Rory,

    Didn't see you in the top 30 at the German Grand Prix, so try harder tyres next time!

    I am still trying to keep up with go karts. l'm always afraid my head is going to fall off.
  12. Replies
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    146,322

    hi All, My last prescription was generic...

    hi All,

    My last prescription was generic Riluzole
  13. Replies
    7
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    4,248

    Hi all, I had a spell of this. Turned out to be...

    Hi all,
    I had a spell of this. Turned out to be fasciculations of small muscles around the ear. Nothing to worry about.

    Ian
  14. Thread: Painful Fingers

    by ian
    Replies
    40
    Views
    18,774

    Hi Terry, I have the same trouble with splaying...

    Hi Terry,
    I have the same trouble with splaying fingers so we should be able to understand each others sign language at the next meeting.
  15. Replies
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    5,897

    Hi Steve, Terry and Roy, Another aspect to...

    Hi Steve, Terry and Roy,
    Another aspect to consider. My progression was slow fot two years but my OT advised not to get a scooter but apply early for NHS wheelchair. She was right. It took four...
  16. Thread: Motability Car.

    by ian
    Replies
    25
    Views
    19,492

    A new WAV has a five year contract but a pre used...

    A new WAV has a five year contract but a pre used one is only three years.
    I had a three year contract and when I became unable to drive it after 14months I was let out of the contract without...
  17. Thread: rilutec

    by ian
    Replies
    15
    Views
    6,845

    I suffer from lack of saliva, dry mouth, throat...

    I suffer from lack of saliva, dry mouth, throat and eyes. Rheumotologist said Rilutec could cause this so I stopped takijng Rilutek for 3 months. Didn't make a bit of difference so I resumed Rilutek.
  18. Thread: Ankles

    by ian
    Replies
    9
    Views
    3,467

    Hi dollygirl11, I wear one like Roy on my right...

    Hi dollygirl11,
    I wear one like Roy on my right foot. It was designed to stop foot drop but also stops turning of the ankle.
  19. Thread: post happy!

    by ian
    Replies
    6
    Views
    2,824

    Hi Dollygirl11, Please don't forget the...

    Hi Dollygirl11,
    Please don't forget the progressive nature of this dreadful disease. What will work now won't necessarily work in three months time. I know it isn't easy but try to think ahead and...
  20. Replies
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    3,199

    Hi Terry, I should have known you would be the...

    Hi Terry,
    I should have known you would be the first to find a way of getting your alcohol without spilling any!

    Will e-mail later haven't time now.

    Best wishes,
    Ian
  21. Replies
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    6,190

    Hi BB, Worth getting thyroid hormones checked....

    Hi BB,
    Worth getting thyroid hormones checked. Loss of body hair is a common symptom of hypothyroidism. Can also slow down metabolism and increase fatigue.. Something to think about.
  22. Replies
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    17,124

    Hi Terry, Didn't realise you could still fly,...

    Hi Terry,

    Didn't realise you could still fly, but it sounds as though you would be safer sticking with your reindeer.
  23. Replies
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    17,124

    Merry Christmas everyone and a happy new year....

    Merry Christmas everyone and a happy new year. May there be some more for each and every one of you!!!.
  24. Thread: Forum Signup

    by ian
    Replies
    9
    Views
    14,529

    Hi Pete and anyone else interested, There was a...

    Hi Pete and anyone else interested,
    There was a programme on Radio 4 yesterday morning, Saturday Live, which had interview with youngish parents with young children.
    He had MND and she had terminal...
  25. I have tried my wife's circulation booster. On my...

    I have tried my wife's circulation booster. On my left leg, which still has some muscles, and it works a treat, but on my right leg where the muscles no longer work, there is no response at all....
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