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    #46
    Thanks Kayleigh,

    On the mend, just slowly. Good excuse to rest up and watch Wimbledon. Hope you're ok too.

    Love Debbie x

    Comment


      #47
      Yes thanks Debbie, I'm OK...but struggling with the hot weather a bit! I have got plenty fans to keep me cool indoors but my garden is south facing and it got a bit too hot out there at the weekend. I used to be a sun worshipper but I find it much more comfortable to stay in the shade these days.

      July seems to have come around very quickly and it's good that the weather's dry for Wimbledon today.

      I expect we should increase our intake of liquid refreshment in this warm weather..... is it Pimm's o'clock yet?

      Cheers!
      Love Kayleigh x
      Last edited by Kayleigh; 1 July 2019, 15:37.

      Comment


        #48
        Hi all,

        Sorry to hear about your falls and I hope it's just your confidence that is damaged.

        I have been lucky and have not fell whilst walking but I can often see myself falling. Just so worrying.

        Shrew, maybe Mick can get a four wheel walker, put a gallon of water underneath the seat and carry dinners etc on the seat.

        I used to carry pints of beer on mine.

        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


          #49
          Thank you all for your feedback. I am sorry Shrew that Mick doesn't have the confidence to drive anymore. I can still drive at the moment and it is one of the few things I do that feels normal. My car helped me today to get out and about and get some confidence back after my fall. I kept to the "kiss" principle ( keep it simple stupid!!). I avoided long walks outdoors but drove to the supermarket to do my weekly food shop and drove to see my mum at her care home. In the supermarket the shopping trolley helped like maybe the walking frames/rollator that many of you have mentioned. Falling has always been a concern for me because my spinal rheumatic condition and osteopenia secondary to it, means I am more susceptible to breaking bones.

          Comment


            #50
            Hi Panniertank,

            Well done for going out today - it's not easy after you've had a fall.

            I really do think you should contact your OT about some equipment to assist you when walking. It is important to get the right thing and for it to be set up to suit your needs.
            Dina

            Trying to keep positive, but not always managing.

            Comment


              #51
              Thanks everyone. Mick had another fall yesterday whllst I was at work. He had gone to get his debit card from his wallet on the tv unit to sponsor someone off facebook, when putting it back he turned and fell backwards. He pressed his alert who rang me at work. From getting the call to pulling on the drive I was 14 minutes. Luckily our neighbour was in and helped me get him up. he fell into his chrome stand fan which broke into two. He felt sore after, particularly his shoulder. The OT is coming tomorrow and I am going to be here. The financial person from the council is coming next week so hopefully stair lift wont be too long. It is a worry when I am working. I finish on the 19th for 6 weeks. I tend to stay close to home now so if I get a call I am not too far away,
              Well done Panniertank, you are doing well. Mick isnt fit enough to go out alone. I took him to the barbers saturday, we parked close, he used his stick and I held his other hand. If we are going any distance he uses his wheelchair of the scooter we purchased.

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                #52
                Hi Shrew, I'm so sorry that Mick had another fall yesterday. Falling can really eat away at confidence in walking. It's also hard on you as I imagine the risk is always in the back of your mind. I hope the OT offers practical help - I'll keep my fingers crossed for you both.
                Dina

                Trying to keep positive, but not always managing.

                Comment


                  #53
                  Driving and supermarket trolley.

                  Hi Panniertank

                  Pushing a trolley around a supermarket, which I can still do - just, was what pointed me towards walkers. They are really good - very stable and you can sit down to rest.

                  I agree about driving. My car seat is the most comfortable I have.

                  Take care

                  Doug

                  Comment


                    #54
                    Oh Shrew I feel for you both

                    I think the stage Mick is at now is a very difficult stage, knowing full well that, for his own safety, more mobility aids are inevitable. It's hard when our balance goes - we can't putt out our arms to break a fall and come crashing down like a felled tree.

                    I hope he recovers quickly and stays safe.

                    Good luck with the OT tomorrow.

                    Love Ellie.
                    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                    Eye gaze user - No functioning limbs - No speech - Feeding tube - Overnight NIV.

                    Comment


                      #55
                      Hi Shew and Mick;

                      Hope you're ok and will soon repair. You can get automatic actuating fall alarms which don't require pressing, they work the same otherwise.

                      Hugs, 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


                        #56
                        Hello Paniertank.
                        You do sound like you've had a tough time and some of your experiences sound very similar to mine, I had lost my mum to cancer and my dad developed dementia, and as an only child a lot was down to me. However, I am extremely lucky in that I have my husband. Even though my progression is slower than many, there are so many things I could not do in life, including getting out and about for days out, without him doing heavy tasks, carrying things, driving me about, doing lots of the housework etc etc. This illness often creeps up, and you don't realise your abilities are gradually eroding. I also had almost relentless insomnia at my time of diagnosis like you. However, whether people call it denial or wishful thinking, I decided the only way to survive, for me, was to keep essentially being me, who happens to have mnd, not mnd first and the person second. By all means adapt and get support, I use sticks in the house, got a mobility scooter for going out where I can. As others have said, GP and mnd clinics can refer you for things like a walker, grab rails in the house, counselling etc. My GP said I could use all the services of the local hospice if I wanted. I don't, but I can if I wish. I see my friends still as friends who care about me, not as carers. Everyone is different, but I needed to fight to keep my sense of self. My walking deteriorated very quickly indeed, but that was getting on for 7 years ago and things have slowed down a lot since then, I still plan for a future and intend to live life, albeit with adaptations and different ways of doing things, absolutely to the full. Being yourself, your interests, hobbies, family and friends are all the things that make you both special and unique. Mnd is a thing, it's not me. I wish you the very best and there are some truly exceptional people on this forum who will always listen to eachother.
                        Best wishes
                        Olivia

                        Comment


                          #57
                          Oh well it is now 6months since my diagnosis and I still am very much in denial. I just can't believe or come to terms with the diagnosis and prognosis. As stated before, I live alone, and have no family members who can provide support. I am still waiting for quotes to adapt my house to be wheelchair accessible. But I still can't see how I will cope with living alone whilst disabled. I have been waiting for weeks and weeks to discuss that with a social worker and that meeting just isn't happening. I am terrified of alternative options such as moving to extra care or residential care homes. I have been through so much stress in recent years and I feel burned out. I am often struggling to cope with the basics of adult life, let alone all the massive decisions I am going to have to make whilst trying to come to terms with this cruel illness.

                          Comment


                            #58
                            Hi Panniertank;

                            Life with Mnd is hard even for me a strong person with support so I can't imagine how it is for you.

                            A couple of people have managed for quite a long time on there own, either through getting carers come in or employing a personal assistant or two.

                            It HOT HOT HOT here in Suffolk, how are you copping with the heat?
                            Best wishes, 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


                              #59
                              Thank you Terry. I hope I can increase my strength and cope , like you say, with carer support etc. I am just about maintaining my independence at the moment at the early stages of MND but my partially fused spine due to my rheumatic condition, exacerbates things. I don,t find anything straightforward.
                              I don't enjoy heatwaves or other extremes of weather. My favourite times of year are Spring and Autumn. Even with my windows open I can't cool my house at night, which doesn't help my chronic insomnia.

                              Comment


                                #60
                                Hi Panniertank;

                                Unfortunately we can't control the weather and I don't think many like the extremes. I have a fan that blows over my and I can adjust as needed. I also listen to talking books in bed, they soon send me to sleep for a hour or two.

                                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

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