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    #31
    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
    I’m going to do this even if it kills me!

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      #32
      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

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        #33
        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

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          #34
          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!!!

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            #35
            Good one panniertank, lol, you do what helps you most. Keep in touch always good to hear from you.
            Sheila x

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              #36
              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.

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                #37
                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.

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                  #38
                  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.

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                    #39
                    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.

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                      #40
                      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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                        #41
                        Hi Panniertank,

                        Im very sorry to hear that you had a fall. Many of us have experienced falls and can totally understand what a shock it can be and how a fall can knock our confidence for a while.

                        I started off using a walking stick but found that a rollator gave me much more stability and also much more confidence (especially outside where bumpy pavements can be such a trip hazard!).

                        Please don't hesitate to speak to your physiotherapist or occupational therapist to ask what can be provided for you - they are supposed provide us with equipment that will aid our mobility etc, so that we can be as safe as possible and the risk of us falling is hopefully minimised.

                        If you would like to know more about rollators, there is some information on this thread:-
                        http://http://forum.mndassociation.org/showthread.php?9032-Rollator&highlight=Rollators

                        I hope you will soon build your confidence back up again. It's great to hear you enjoyed your day out yesterday. I hope you have another great day out very soon!

                        Take care

                        Love Kayleigh x
                        Last edited by Kayleigh; 1 July 2019, 00:52.

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                          #42
                          Originally posted by shrew View Post
                          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.
                          Hi Shrew,

                          Sorry about Mick's fall. It must have been a nasty shock for both of you - but a relief to find out at the hospital that there were no broken bones!

                          Did Mick fall indoors? I remember last year, one time when I was using a walking stick indoors, I suddenly lost my balance and fell backwards. Luckily no bones were broken but it did jolt me into the realisation that perhaps I needed to upgrade to something more supportive than a walking stick - and that's why I got a rollator.

                          If Mick has only been using a walking stick so far, then perhaps he might consider other options (such as a 3 wheeled or 4 wheeled rollator) that his physio or OT should be able to provide.

                          I hope Mick is feeling much better now.

                          Love and best wishes to you both,

                          Kayleigh x
                          Last edited by Kayleigh; 1 July 2019, 01:01.

                          Comment


                            #43
                            Thanks Kayleigh, yes indoors, he doesnt use anything! He also fell the week before. He was frustrated because he couldnt do something, spun round and fell.
                            The problem is at almost 16st I cannot lift him!
                            The OT is coming tomorrow. Perhaps they could supply some type of hoist .We also have the council coming next week to complete a financial assesment for a stair lift. He is finding it hard going going up the stairs.
                            He has a trolley he wheels his meal into lounge on once he's microwaved it at lunch. I usually do his breakfast before work unless he gets up slightly later and I prep that too and he can bring it on that. I need a bigger house!

                            Comment


                              #44
                              Hi Panniertank and Shrew,

                              Sorry to hear about your fall Panniertank and Mick's fall, Shrew. It really knocks your confidence because it happens without warning making it hard to prevent. It also really hurts which we could do without when we have other things to cope with.

                              I had a fall a couple of weeks ago and had to call an ambulance, which has made me rethink the aids I need to transfer. I phoned my lovely OT and physio and they are calling this week with suggestions so please dont hesitate to get in touch with yours. it's hard to accept help ( and I am totally guilty of this # own worst enemy ) but we should stay one step ahead and have things to help us before we need them urgently. It must be doubly scary if you are on your own or if like Shrew you are unable to lift your husband.

                              Panniertank, it sounds like you had a lovely day out before your fall and I hope this wont put you off going out again.

                              Take Care,
                              Love Debbie x

                              Comment


                                #45
                                I hope you are feeling better now Debbie and your leg is much less painful than it was.

                                Love Kayleigh x
                                Last edited by Kayleigh; 1 July 2019, 12:59.

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