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  • Jer788
    replied
    Kayleigh you’re a star. Reply later I’m shattered for some reason today xxx Jerry

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  • Kayleigh
    replied
    Hi Jerry,

    You're definitely not alone with your concerns about getting to the 'smallest room in the house' in time. It's an issue that many of us have talked about on this forum!

    Making a quick dash to the bathroom using my rollator was getting more and more difficult, and I was getting stressed about getting there 'in time'. I thought - I have two options to make those bathroom trips easier and less stressful:-
    Option 1. Permanently move into the bathroom.
    Option 2. Get myself an 'electric chair' (opps ... I definitely meant 'electric wheelchair' !!!! LOL)

    Option 1 might have worked because I could still use my IPad and read a book in there (but I'd definitely get bored after a couple of days! ) LOL

    Anyway, to maximise my independence and mobility, option 2 definitely works for me!

    There are lots of different options concerning electric wheelchairs and powerchairs. It depends what your priorities are. Mine doesn't have one of those fancy seats that can be raised up to bar-level level (sadly LOL), but more of a priority for me is that it can be folded down and put in the boot of the car.

    Although I never envisaged needing a wheelchair, at least these days there's a lot of styles/features to choose from and they can give us the freedom to a dash to the bar (or toilet!) very quickly!!

    Another option might be for you to get something like a 'rollator' - I amstill able to use my rollator indoors, but I am a lot more mobile, and can get a lot more done, using my wheelchair.

    I hope you are able to get some effective medication for the cramps, because I don't like to think of my 'forum brother' in Thailand being in pain - and we have got enough to deal with, without having painful cramps pestering us!

    Your GP might be able to prescribe some painkillers, which might help when the pain is bad (downside is that with many of the stronger painkillers you have to avoid drinking alcohol, and if you take them for more than a few days they can become addictive - but I find they are handy for short-term use and can stop the pain when paracetamol and/or ibuprofen doesn't work). Hopefully you will be able to try magnesium, as suggested by Ellie.

    Happy Googling about wheechairs -hopefully you will be able to get yourself one, whenever you would like to.

    Cheers!

    Kayleigh xx

    P.S. Fun fact: leafy green vegetables such as spinach contain magnesium. We'd probably have to eat a shed load of spinach though, for it to have much of a positve effect (if any) on painful cramps - but it didn't seem to do Popeye any harm! LOL
    Last edited by Kayleigh; 10 February 2019, 17:35.

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  • Jer788
    replied
    Hi Kayleigh, never thought I’d be in the market for one but they look pretty cool. I went to a party Friday and the anxiety of wondering how far away the toilet is and would I manage to make it did my head in.
    Thanks again xxx Jerry

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  • Kayleigh
    replied
    Hi Jerry,

    Admittidly, I don't go to the pub every day! But it's good to get out and about whenever I can. There are quite a few pubs, restaurants etc near my home, and using an electric wheelchair means that I can get there and back independently (and without the risk of falling over - especially after a few drinks!).

    Apparently, there are even electric powerchairs with seats that can rise up to bar-level!:-

    https://www.pridemobility.com/p/jazzy-air

    Cheers!,
    Kayleigh x

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  • Jer788
    replied
    Thanks Jaqui, well noted.
    Regards Jerry

    Warfarin is a medication to help treat and prevent blood clots it is not a medication intended to treat cramps.

    Please do speak to a doctor before taking any prescription medications over the counter because the side effects or effects on you may prove detrimental.

    There are drugs designed specifically to treat cramps such as Baclofen or Tizanidine, again we would always suggest that a consultation with your doctor is required to make certain these drugs would not be contra indicated for you due to any previous medical history.

    I can understand how difficult it must be for you to speak to a doctor about your condition but for your own safety please do not take any medications which are not intended for you.

    With kind regards
    Jacqui Anderson
    Senior MND Connect Adviser[/QUOTE]

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  • Jer788
    replied
    Hi Kayleigh,

    No problem at all being a cluck mother hen ��. The wheelchair is probably the next step for me though I have other issues to look at first. Dave left for home last and ur right I’d beat him to the pub all day. The cramps with the Wafarin disappeared but I’ll look at something else to alleviate things.
    Take care love Jerry
    PS. Pleased you’re still getting to the pub ��

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  • Jer788
    replied
    Thanks Ellie, the magnesium sounds a good idea I’ll see what the doctor says this week.
    Thanks love Jerry

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  • MNDConnect
    replied
    Dear Jerry,

    Warfarin is a medication to help treat and prevent blood clots it is not a medication intended to treat cramps.

    Please do speak to a doctor before taking any prescription medications over the counter because the side effects or effects on you may prove detrimental.

    There are drugs designed specifically to treat cramps such as Baclofen or Tizanidine, again we would always suggest that a consultation with your doctor is required to make certain these drugs would not be contra indicated for you due to any previous medical history.

    I can understand how difficult it must be for you to speak to a doctor about your condition but for your own safety please do not take any medications which are not intended for you.

    With kind regards
    Jacqui Anderson
    Senior MND Connect Adviser

    Leave a comment:


  • Kayleigh
    replied
    Hi Jerry,

    Sorry if I sounded like a bit of a clucky mother hen - I didn't mean to frighten you with the NHS information about Warfarin! It was just a bit of sisterly concern for our 'forum brother' in Thailand - just wanted to make sure that you are aware of the possible side effects etc. Interesting that the Warfarin seems to have got rid of your cramps though! Hopefully you will be able to get an effective alternative to the Warfarin which is not so risky for you to take.

    Love
    Kayleigh x

    P.S Tell your friend Dave that he should be giving you a piggy-back when your legs get get tired! My legs aren't too clever either, but thankfully I have got an electric wheelchair, so that I can still make those essential trips to the pub! If I could, I would send you a top of the range electric powerchair so that you could race Dave to the bar - and from what you have said about him, it sounds like you would probably get to the bar first! Joking aside, it sounds like your good friend Dave is a cool guy, just like you!

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  • Ellie
    replied
    Hi Jerry,

    Magnesium tablets are good for cramps (ease into them as they can have a laxative effect) as is massaging cramp with magnesium oil.

    Quinine Sulfate is a prescription med for treating leg cramps, particularly at night.

    Also keep well hydrated.

    Good luck.

    Love Ellie.

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  • Jer788
    replied
    Hi Terry, well it eased me for a while but going to look into it more it really was bloody painful. I couldn’t even cross my legs without cramping up. Thanks for the heads up.
    Love Jerry

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  • Jer788
    replied
    Hi Kayleigh, thanks for the info. See below my reply to Ellie but thankfully you guys have scared me off. Yes, Dave and I are having a ball, well as much as someone who can only walk 10 yards without a rest and an overweight copper can have ����.
    Love Jerry x

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  • Jer788
    replied
    Hi Ellie, I haven’t tried anything for the cramps. I did inform my neurologist but he didn’t recommend anything so I’ve just been living with it. TBH I took half a tablet 2 days ago and have not had any cramps since but will visit the neurologist again to get his view before I do anything else. Thanks for the advice xxx Jerry

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  • Ellie
    replied
    Jerry, I'm all for trying meds off-label but Warfarin, no way, it's a heavy duty drug and has onerous restrictions.

    It interacts with a long list of meds (both prescrpition and OTC), food and alcohol.

    And, as Terry said, your INR levels need to be constantly monitored as they can go up & down dramatically from week to week, according to what food or alcohol you had.

    What have you tried for leg cramps so far?

    Love Ellie.

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  • Kayleigh
    replied
    Hi Jerry,

    Further to Terry's advice, the NHS has some detailed information about Warfarin on their website.

    https://www.nhs.uk/medicines/warfarin/

    It looks like there's a lot to consider before taking Warfarin including whether it is suitable to be taken with your current medication, including the Edavarone.

    I know from experience that cramps can be very unpleasant, but fortunately I can usually get rid of the pain quite quickly with painkillers.

    Hopefully you can get the medical advice you need to be able to rid of the pain you are experiencing.

    I hope you are enjoying the time with your good friend who is visiting you.

    Best wishes,
    Kayleigh x

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