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Limbs suddenly much heavier. Need tips to cheer me up!

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    #16
    Hi Sarah,

    So sorry to hear about your fall. It's so easily done and it really knocks our confidence ( and it hurts !!) Hope you're feeling better today.

    Take Care,
    Love Debbie x

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      #17
      Hi Sarah,

      I'm glad you enjoyed your shopping trip to M&S and your new scooter enables you to get out and about safely.

      I always enjoy a bit (ok, I admit - a lot!) of retail therapy. I don't own a scooter but my local shopping centre hires them and I also have an electric wheelchair which helps me to get out and about sometimes.

      I find that even popping out for a little while can help to cheer me up! Now the weather is getting colder, I'm looking to find more accessible places to visit that are indoors.

      I have found the 'Rough Guide to Accessible Britain' handy for planning trips out. Just in case it's useful for you, I have provided a link to the relevant webpage on the Motability website (where the Guide can be viewed and downloaded from):-
      http://https://www.motability.co.uk/news/rough-guide-to-accessible-britain/

      I'm sorry to hear about your fall. Just a thought - if your OT or physiotherapist hasn't done so already, he or she should be able to get something like a rollator for you.

      Although 4 wheeled rollators are more sturdy, I find that using one with 3 wheels (also called a tri-walker) more suitable for indoors, as it fits in more easily around my home, including in the 'smallest room'. However, your OT should know which mobility aids are most suitable for your needs.

      Also, OTs can sometimes arrange for grabs rails to be put up.

      I hope you are recovering from your fall and you and your wife had a lovely weekend.

      Best wishes to you both.
      Love Kayleigh x

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        #18
        Hi Sarah, how's your head? I did similar a few weeks ago. Scary indeed. I too have a hero but I got up eventually through team work. 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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          #19
          My head is a little tender but otherwise fine - think I must have a very thick skull!!

          Today we had an alert system installed whereby I wear a buzzer which summons help if I need it. Sue (my wife) has one she can use to get help for me too. Mine even has fall detection technology which detects if I have a bad fall & automatically sends the alert - how clever! It’s given us some peace of mind anyway.

          Great idea about a 3-wheeled rollator for indoors. I’ve got a 4 wheeler for out & about which I had to pay a bit for, but can have a 3 wheeler for free so I’m going to request one. Pronto!

          Thanks everyone for all the tips!

          Nos da (as we say here in Wales!) xx

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            #20
            Noswaith dda Sarah,

            It's good to hear that you are feeling much better, after your recent fall.

            I think it's a good that you can be provided with a rollator because it should help to keep you safer, especially if you aren't currently using any mobility aids indoors. I used a walking stick for a while but, when I lost my balance and had a fall, I realised that a rollator would be much better for me - and I think that some have a tray attachment, as well as a bag or basket, which can be quite useful.

            Thanks for kindly letting us know about the alert system you have. It sounds very impressive, especially as it includes a feature to automatically detect falls.

            Sending very best wishes to you and Sue (and a friendly pat on the head for each of your two lovely dogs).

            Kayleigh x
            Last edited by Kayleigh; 16 October 2019, 20:35.

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              #21
              Hi Sarah, apologies for not being supportive of you but I couldn't think of anything useful to say - too selfishly distracted.

              It sounds as though you and your wife are taking sensible steps to keep you safe - very wise.

              Best wishes to you both.
              Dina

              Trying to keep positive, but not always managing.

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                #22
                I love this forum! Everyone’s so lovely. 💕

                My physiotherapist is coming on Monday with 2 Zimmer frames, which she said will be better for me for around the house (I’ll have 1 for upstairs & 1 for downstairs). I have a 4-wheel rollator for out & about too. Amazing help here in South Wales.

                Have a great weekend everyone - the sun’s finally out here! ☀️👍😀

                Diolch,
                Sarah xx

                (By the way, I’m not a Welsh speaker - i just know a few words! I’m actually English but love Wales - this is my home now. I even support them in the rugby! 🏴󠁧󠁢󠁷󠁬󠁳󠁿 🏉 &#129315

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                  #23
                  That's great to hear Sarah.

                  It's a good idea to double up on some pieces of equipment for upstairs and downstairs.

                  Glad to hear you're well looked after by your community services.

                  Stay safe now!

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

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                    #24
                    Hi Sarah... I was diagnosed in June, so a bit after you... some of the things that have helped me physically and emotionally are that MND nurse organised me to have hydrotherapy with a pool physio... its so lovely and warm and really helps my muscles to be flexible.. tho i can't do anything the next day,, but that's ok.. i conserve energy and use it when i can. I also had six sessions of music therapy - which was amazing.. a one to one with a music therapist.. we laughed and cried (well, i did)... I've also just got a cleaner in as i live alone and cannot do much and just got a mobility scooter to help with getting out and about locally and around the supermarket... I also had a short holiday with a friend last week to Ljublijana - and the assisted travel was great in both airports and i rented a mobility scooter so i could get around. It was fantastic as it gave me such freedom and I thought, my life is not over... for me its learning to do what i can within the ongoing limitations. still waiting for stairlift etc... that is SO slow ... i hope some of these ideas encourage you to find out what is out there to help you and know that there is life with MND - but not as we'd like it to be, i know. It sucks...

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                      #25
                      Good news about the 2 zimmer frames, Sarah. I'm really pleased for you that you have good services - it makes life so much easier and smoother.
                      Dina

                      Trying to keep positive, but not always managing.

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                        #26
                        Love the hydrotherapy & music idea - will ask about those as I know my MND clinic venue offers some complimentary therapies. I used to sing a lot and really miss it. So this might be a good alternative! Like you, I’m determined to get as much out of life as I possible, & learning to appreciate what I can still do - while I can!

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                          #27
                          Originally posted by SarahWP View Post
                          Love the hydrotherapy & music idea - will ask about those as I know my MND clinic venue offers some complimentary therapies.
                          Hello Sarah,

                          How are you? - I hope you are continuing to make a good recovery after your fall.

                          Hopefully your MND clinic will be able to arrange for you to have any complementary therapies you are interested in (and, as mentioned in the following factsheet, many local hospices can also offer us a range of different therapies too).

                          Link to MNDA Factsheet 6B about Complementary Therapies:-

                          http://https://static.mndassociation.org/app/uploads/2019/06/17170124/06B-Complementary-therapies.pdf

                          Best wishes to you and Sue,
                          Kayleigh
                          Last edited by Kayleigh; 25 October 2019, 20:47.

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