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    #61
    Hi panniertank,
    Good to hear from you. I don't like the hot weather either, I will be pleased when it cools down a bit. I don't cope well with having Mnd. It scares me so much. I have lost my voice now and I use to love to talk. It helps if I don't think about it. That's the only thing that helps me. I don't even like reading about it
    Take care
    Sheila

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      #62
      Thank you Sheila . I am sorry that MND scares you and you have lost your voice. I agree that not thinking about MND can help;- just take one day at a time. But people also mention planning ahead etc, so it is difficult just to take one day at a time all the time. I have suffered with anxiety most of my adult life and the best way I found to deal with it was to be active. For example the best I feel at the moment is driving my car. I am gutted I can't take my mum out of her care home any more. Providing care for her and giving her my time for a bit of quality of life was so important and enjoyable for me.

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        #63
        Hi Panniertank, I'm really sorry that you are finding it so difficult to cope with your diagnosis. Do you attend an MND clinic? I am wondering if there might be a neuropsychologist available for you to talk with. Failing that, could your GP do a referral to mental health services for you to have counselling of some sort?

        Are you seeing any healthcare professionals in connection with the MND? If so, perhaps one of them could give you some help and support.
        Dina

        Trying to keep positive, but not always managing.

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          #64
          I really feel for you. You are having such a rough time. You do need to think of the future. In my area we have complexes with flats you can rent or buy. They are set up for disabled people with appropriate bathrooms, space etc and dining rooms etc and on site cares. If it was me in your position I would look at this. As for continuing healthcare funding - it is not automatic (sadly) for MND sufferers - it is based on an assessment and depending on how high level your needs are you could get turned down - although you can get reassessed as your needs change and ultimately it is very likely that you will get it. Take care

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            #65
            Uggh. I have been stuck in the house most of the day without the confidence to get out and walk. But I finally got some confidence to walk to my local shops early evening. But I struggled and my right leg felt weaker than normal. I persisted and walked very carefully. But my balance was bad when climbing up and down pavements to cross roads. I really struggled climbing down one pavement and I used my walking stick to try and help but after stepping down I fell backwards. Luckily I didn't hurt or fracture anything and a group of young people checked me and helped me get back up. They then even drove me back to my home. So kind. But the experience destroyed my confidence to get out of the house and walk. As ever if I do something positive to counter this condition it eventually always kicks back with a negative response.
            This morning I visited an extra care home with my social worker. But it just brought home my fear of losing/leaving my own home and I was surprised at how much it would cost/additional costs etc. But today's fall just brings home my other fear about how I will cope living alone in my own home and if there will be enough care available.
            I am so sorry. Lots of you have given me advice and feedback but I feel so isolated and alone and I just don't know how I am going to cope in the future and/or make the massive decisions about staying in my own home/spending lots to modify it to be wheelchair accessible or selling my home and moving to something like an extra care home and again, very expensive. It is bad enough coming to terms with the diagnosis/prognosis of MND but there are all these other massive decisions to make and financial worries.
            I am sorry to say this but sometimes I wish I went to sleep and didn't wake up;-passed away peacefully. The best of my life is over ( and it was great in times in spite of my spinal rheumatic condition ) and a part of me feels less afraid of dieing than all the disability and stress that lies ahead.

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              #66
              Oh, Panniertank, it is so sad that mentally you are struggling to cope with your diagnosis. It's so difficult to make the sort of decisions you have mentioned when you are alone. I wish I had a way to help you deal with what is happening but all I can offer is empathy and understanding. I can certainly understand your loss of confidence in your walking, having been through something very similar before my diagnosis.

              You don't need to apologise to forum members, we all know how difficult life becomes, in all sorts of ways, once you have a diagnosis of MND. I also understand your thoughts about dying peacefully in your sleep. It was brave of you to admit those thoughts.

              Do, please, look after yourself. I hope you find a way to make the decisions that need to be made so that plans can be put into action.
              Dina

              Trying to keep positive, but not always managing.

              Comment


                #67
                Hi Panniertank, I'm sorry about your fears and stress about decisions. Maybe ring MNDA for a chat to help you make a decision. Take care. 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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                  #68
                  Thank you Lynne and Gillette. Another night of chronic insomnia for a change. I'd been thinking that my condition had plateau' but yesterday's fall and the way my leg/balance feels this morning makes me suspect that it has progressed. I can't believe that I did a walk on Monday and I was walking continuously for well over an hour. And now at the end of the week I am struggling just to walk around my house!!

                  Comment


                    #69
                    Oh dear Panniertank, so sorry for your insomnia and difficulty walking around your home. Sleep is very important. I'm more wobbly if over tired so it's possible that this is why you are struggling so much this morning. Take care today. I hope that you can have a good doze during the day and it helps. I hope that your OT is organising that you receive a walker. But if not I think that you ought contact him or her to explain. Obviously on a Saturday nobody is available.

                    I hope that you stay safe over the weekend and can sort something out on Monday. Lynne x
                    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.

                    Comment


                      #70
                      I will contact my physio on Monday. In my MND clinic it appears to be the physios that select walking AIDS. When they first assessed me I asked about rollator / walking frames but they didn't think I was at that stage, so they gave me walking sticks and balance exercises. It is strange;- I take one walking stick with me and, as I was taught, I carry it on the opposite side to my weak leg. I don,t use it with every step, I use it mainly when I stop to cross roads. But as I stated before it didn't help me to step down off the pavement.
                      Another thing I am worried about is my stress and anxiety. I have suffered with it all my adult life and the best way I found of dealing with it was to keep active . In my jobs, the adrenalin often got me started full on with the task in hand. But my ability to be active is already badly affected and will worsen as my disability worsens.

                      Comment


                        #71
                        Hi Panniertank,

                        Sorry to hear about your fall and obvious lack of confidence following it. Going down curbs is a hard thing to do, maybe two walking poles would be better because they are longer.

                        If we are tired we don't perform as well and maybe your muscles were tired as well and you were not concentrating.

                        Your other problems won't help but we know it must be very hard for you.

                        Love Terry
                        TB once said that "The forum is still the best source for friendship and information."

                        It will only remain so if new people post and keep us updated on things that work or don't work and tips.

                        Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

                        Comment


                          #72
                          Hello Panniertank. I'm really sorry things aren't good for you. You may remember me my husband has the same arthritic condition as you.

                          We looked into extra care housing, the cost was horrific. They would not rent us the accommodation we would have had to buy. £295,000 for a flat with poor resale potential and a service charge of £325 a month.
                          Who knew you had to be a millionaire to face disability!
                          We did manage to get an adapted bungalow with social housing.

                          We haven't faced this disease to the bitter end but we do try to anticipate the next hurdle. It seems less overwhelming to take this disease in steps and stages.
                          Such as we have a ceiling hoist fitted but hubby isn't quite there with needing it just yet.

                          I agree with others you do need a very proactive OT to make sure things are in place.

                          One thing our local MND coordinator wants DH to do is attend a day hospice. Not because he's dying but to ensure he gets all kinds of help, which could include emotional support.

                          Finally I wouldn't worry too much about finances. My husband's care is paid for by the NHS though Continuing NHS funding. They seem very good at helping people with MND. This is not means tested.

                          I hope I don't sound preachy! Like others on here I would just like to help.

                          Take care
                          Julie.

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                            #73
                            Thank you Terry and Julie. I do have a very proactive OT thankfully.

                            Comment


                              #74
                              Hi Panniertank;

                              The standard Rollator might not be so good at going down curbs, see what she thinks. The longer special ones would be better that some others have bought. She just might supply one IF IT'S what you need to KEEP safe and KEEP mobile outdoors.

                              Love Terry
                              TB once said that "The forum is still the best source for friendship and information."

                              It will only remain so if new people post and keep us updated on things that work or don't work and tips.

                              Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

                              Comment


                                #75
                                Dear Panniertank.... i joined the forum today and posted an introduction which you might like to read. I am in a similar situation to yourself and whilst having great friends around me I do not want my home turned into a hospital room. When I cannot get around and need personal care I would rather move out and go somewhere where I can have some care on site. That is how I feel now. I have been to one MND support group and found it very positive and helpful. Is there one near you?
                                Eileen

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