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Close Relative - possible MND?

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  • Positive vibes
    replied
    Originally posted by richard View Post
    Positive vibes I’m sorry to hear your news. Remember we are with you all the way on the is. You can ask whatever you wan, nothing is too trivial, and someone will be able to share their experience of that particular concern. Take care and hugs to all your family.

    Richard
    Thank you Richard. I really don't know where to start.... I think I need a new thread, maybe most appropriate on the carer's thread on here, so I will pop over there to start one. I feel like hiding under the duvet and being in denial, so, goodness only knows how he feels, but that is defeatist and I am not going to do that. I want to be there for them 100% and fight to get them the best help possible. Thanks everyone, I am going over there now....

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  • Positive vibes
    replied
    Originally posted by Deb View Post
    Hi Positive vibes,

    So sorry it is bad news! I found once I was diagnosed I got the care and support needed and we didn't feel so isolated. However, obviously you wish it was something else and it's such a shock even if it's suspected.

    Thank you for letting us know. Take care of yourself..Im sending you positive vibes .
    Love Debbie x
    Thank you Deb

    That's the one big positive - the consultant is pulling out all the stops to get him support and help, which we really need, since Mum is slightly worse (possible early dementia - thats another thing for me to tackle).

    Dad seems pretty fatalistic and accepting at the moment, as he suspected it all along, and knows there isn't a cure. I am grabbing all those positive vibes you are sending, thank you.

    Luv PV

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  • richard
    replied
    Positive vibes I’m sorry to hear your news. Remember we are with you all the way on the is. You can ask whatever you wan, nothing is too trivial, and someone will be able to share their experience of that particular concern. Take care and hugs to all your family.

    Richard

    Leave a comment:


  • Deb
    replied
    Hi Positive vibes,

    So sorry it is bad news! I found once I was diagnosed I got the care and support needed and we didn't feel so isolated. However, obviously you wish it was something else and it's such a shock even if it's suspected.

    Thank you for letting us know. Take care of yourself..Im sending you positive vibes .
    Love Debbie x

    Leave a comment:


  • Positive vibes
    replied
    I think we are all still reeling. It hasn't sunk in really, Mum got very upset, so I gave her a big hug and said it's still Dad, he's still with us, his mind won't be affected, and he can still nag us if he wants to...! I think the only worry he has is being in a wheelchair, but, the consultant said that this isn't always the case. We are all going to get together for a socially distanced family meeting to discuss his wishes/needs (including the parents) and make sure he is getting what he wants, and is leading us on his decisions, whilst he can tell us his thoughts on the matter. Sooner rather than later.....

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  • Gordan1111
    replied
    Sorry is bad news. I think the agony of waiting is as bad as diagnosis

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  • Barry52
    replied
    Positive vibes sorry to hear that your dad has had MND confirmed but at least he will now get the care plan in motion. You may need to push the various elements of the system as I understand that delays are occurring due to Covid. One element of care that is often a post code lottery is wheelchair services and MNDA or your dad’s OT may help you with this.

    Best wishes.

    Leave a comment:


  • Bowler
    replied
    Originally posted by Positive vibes View Post
    Hello all

    Just to let you kind people know his results, sadly, it is MND... on the positive side, the consultant is fast tracking him so he will get all possible help. Still trying to take it all in.... I think I will be spending more time on here.....
    So sorry to read this. You know you will get loads of support here

    Leave a comment:


  • Positive vibes
    replied
    Hello all

    Just to let you kind people know his results, sadly, it is MND... on the positive side, the consultant is fast tracking him so he will get all possible help. Still trying to take it all in.... I think I will be spending more time on here.....

    Leave a comment:


  • Positive vibes
    replied
    Thank you for everyone's input and advice, clock is ticking on the awaiting results, late next Thursday....

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  • Positive vibes
    replied
    Originally posted by Ellie View Post
    Magnesium doesn't work for everyone - if he wants to try again, tabs should be 300mg of magnesium citrate, not oxide or sulfate. Can have a laxative effect. If he already tried those and they didn't work, move on.
    Thank you Ellie, this needs to be tried, as I am not sure what version of magnesium he was taking or dosage. Anything that helps or improves his quality of life can only be a good thing.... thank you for taking the time to help out.

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  • Ellie
    replied
    Magnesium doesn't work for everyone - if he wants to try again, tabs should be 300mg of magnesium citrate, not oxide or sulfate. Can have a laxative effect. If he already tried those and they didn't work, move on.

    Leave a comment:


  • Positive vibes
    replied
    Originally posted by Ellie View Post
    Positive vibes He could try magnesium supplements, CBD Oil, massage and heat for muscle cramps. If heat helps, you can get heat pads, which would be good to put under the leg in bed - many have an auto-timer, or you can use it on a timer plug.
    Hello Ellie

    I think he's tried the magnesium, but, I don't know how long he was taking it so I will check. The CBD oil/massage sounds good, and the heat pad. Why didn't I think of that last one? Doh....

    Leave a comment:


  • Positive vibes
    replied
    Originally posted by Gordan1111 View Post
    Hi there's a few supplements that some claim help to slow progression but I don't whether actually do or just make one feel at slightly less slightly helpless ? Tudca, theracumin and I think something called elysium- see Julian's posts here. Whether they do actually anything the jury's still out
    Hello Gordan1111

    I haven't heard of those, thank you, I will suggest to him.

    Leave a comment:


  • Ellie
    replied
    Positive vibes He could try magnesium supplements, CBD Oil, massage and heat for muscle cramps. If heat helps, you can get heat pads, which would be good to put under the leg in bed - many have an auto-timer, or you can use it on a timer plug.

    Leave a comment:

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