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  1. #31
    Forum Member Barry52's Avatar
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    Mar 2012
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    Newark on Trent
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    2,342
    Hi Panniertank,

    I posted this on another thread.
    You have had great medical advice from our forum family so far and when you have the meeting with the medical team you might want to ask about Commend which is a new service offered by several of the MND specialist clinics. It relates to Acceptance Therapy (ACT) and the clinics have qualified therapists who help deal with the coming to terms with the diagnosis. I know that they are currently recruiting patient involvement.


    Barry
    Iím going to do this even if it kills me!

  2. #32
    Forum Member
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    May 2018
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    424
    Hi Panniertank,

    I am so sorry that you have such alot to cope with on your own. It is not surprising that you dont want to go out or that you are unable to make the most of everyday... it must be so isolating for you. Like Dina says a counsellor could give you a safe place to talk about your worries because the unpredictable nature of MND makes you feel you have lost control.

    On a practical note, a walker would make you feel safer moving around as walking sticks are too wobbly. I would have thought they would have provided one if you had asked because it will give you more confidence and it is safer.

    Take care of yourself,
    Love Debbie x

  3. #33
    Forum Member
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    Feb 2019
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    235
    Hi Panniertank!
    So good to hear from you. I also have trouble coming to terms with having MND. But somehow I have to! Also I know what you mean by having no control is causing you anxiety. My GP gave me the name of someone I could talk to called the "village agent". Well, I soon found him on Facebook and he practically knew everyone that I do!!! Too close for comfort. I certainly wouldn't feel comfortable.

    Take care!
    Sheila

  4. #34
    Forum Member
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    May 2019
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    62
    Thank you all for your feedback and advice. The only time I ever feel positive , I think, is when I am in denial. I will get re-diagnosed or my symptoms will just go into remission. But, As one of my favourite sayings used to be;- denial isn't just a river in Egypt!!!

  5. #35
    Forum Member
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    Feb 2019
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    235
    Good one panniertank, lol, you do what helps you most. Keep in touch always good to hear from you.
    Sheila x

  6. #36
    Forum Member
    Join Date
    May 2018
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    25
    Hi Panniertank,

    To go back to your original post, yes, I am living alone and very hard work it is too coping with this condition. But then, it's hard for everyone. I asked the mnd nurse how many of her patients were alone; she said a quarter but about another quarter had a partner who could not help them. I am still managing - just - without carers. I do whatever forward planning and adapting I can, but refuse to dwell on the long-term because I can do absolutely nothing about that now. I have two children - one living quite close, one further away - but we are clear they cannot become my carers. I build what support teams I can - friends (lots - they won't do the carer stuff but there's more than one kind of support) and professional services. And I try to make the most of today because next week/month/year is always going to be worse.

  7. #37
    Forum Member
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    May 2019
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    62
    I fell in my house today but fortunately didn't hurt or break anything. My right leg is weak and affects my balance when walking. But very occasionally (not even every week) it just suddenly gives way and nearly collapses. This time I couldn't cope with how it affected my balance and fell bu luckily I partly broke the fall and landed on my knees. It is so strange when it happens as there is no gradual build up, warning pains etc. It just happens suddenly with no warnings. It has destroyed my confidence to get out of the house today and I have even struggled to walk around the house in case it suddenly happened again.
    Yesterday I drove to a nice, historical local market town. I did a nice and reasonably lengthy walk around the town. I felt positive that I had tried to live in the moment and make the most of the day. It was the best day I had all week.But now,as ever, MND has kicked back with a negative response.

  8. #38
    Forum Member Lynne K's Avatar
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    Nov 2017
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    912
    Sorry about your fall Panniertank. I know the feeling. It does effect confidence but I fought it for a few years. My right leg used to do that on my hillwalks. Have you got any walking aids yet, such as sticks or a walker? Best get something soon even if you don't feel that you need some support every day. It'll be there on days that your confidence is low and when you need some more often later. Lynne
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  9. #39
    Forum Member Gillette's Avatar
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    Mar 2019
    Location
    Greater Manchester
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    630
    Panniertank, I can understand your loss of confidence after the fall. As for yesterday, it sounds as though it was an enjoyable day. Your fall today doesn't change the fact that you lived in the moment yesterday. I hope you regain your confidence very soon. As Lynne said, it might be a good idea to get yourself a walking aid of some sort. Your Occupational Therapist should help you to get some sort of walking aid.
    Dina

    Trying to keep positive, but not always managing.

  10. #40
    Forum Member
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    Jul 2018
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    sorry about your fall. Mick fell last saturday and had to get checked out at the hospital. He doesnt have the confidence to drive anymore. We bought an automatic in december but he only drove it twice. His head his heavy, he doesnt feel he has enough movement to safely check. He doesnt walk far at all now, just around the house, and if I park close into the barbers, he takes his stick and I hold his hand.

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