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Thank you and walking stick suggestions!!

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    Thank you and walking stick suggestions!!

    Sorry haven't been on the forum to thank people for your lovely words after my fall. Just looking at a screen is causing the eye to ache terribly.
    I have really done a proper job ... 12 stitches in all and the extra ones since near bone. Have never known swelling like it can not open the effected eye anymore. I assume swelling gets worse before it gets better?! Can't decide if need to get this checked out.
    doesn't a fall knock your confidence. I feel quite anxious pottering about. Cant hardly do much anyway yet but just walking steadily outside house is making me nervous. Can I ask for recommendations... for when members first began to have falls ( this really can't be just me!!) Did u go for like a trekking pole first just for a bit of steadiness? I don't need a wheelie thing yet or big frame etc as I can walk... just balance isn't good often and legs feel rigid. Anyone know any particular ones that are quite light to carry but stable also?

    I am probably being paranoid but am also concerned that such a bad bash to the head might speed up any mnd conditions?

    Thanks again for the kind words and support. Feel such a muppet and look like I just lost a boxing match badly!
    take care everyone xxx

    #2
    Lovely to hear from you Zante, even if you do look like you went 6 rounds with Anthony Joshua.

    Given that you're now a bona fide member of the club, with stitches or staples to prove it like all the best of us, I'm going to politely suggest that you are assessed by your OT or Physiotherapist and you are then free to accept or ignore any recommendations before buying a stick of sorts.

    If you're worried about unusual swelling, don't let it add to your stress, but ring your GP or 111.

    Originally posted by Zante View Post
    I am probably being paranoid but am also concerned that such a bad bash to the head might speed up any mnd conditions?
    That's unlikely but stress and lack of sleep can suppress your appetite and increase apathy, neither of which are good for anyone.

    Take it easy, get plenty of rest and be kind to yourself. πŸ€—πŸ€—πŸ˜˜
    ​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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      #3
      Zante falling does knock your confidence. I agree get assessed for the right equipment, even a walking stick needs to be the correct height etc.
      If you can still get in the bath Epsom Salts added to the water really sooth the body. Maybe a little lavender oil.
      Just take it easy..I'd love to go a few rounds with Mr Joshua....no boxing involved. πŸ˜ˆπŸ˜˜πŸ˜‚
      Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

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        #4
        Thanks both Ellie and Linda. I am a lot more mobile than my post probably makes out which is why sometimes I feel guilty on here as I am mobile. I don't have a OT or Physiotherapy yet. I had a letter this week from my original neurologist ( General neurology) who said she has transferred my care to the neuromuscular mnd specialist. Next week I have the repeat emg and central motor evoked potential tests and ncs again. At the moment the letter said a type of mnd of which they don't seem to have confirmed for definite which yet. So I might get more information after the next tests. I assume the rest of the care comes afterwards.
        I do understand that a stick or pole would need to be correct sizing and right support so might wait for a specialist then.
        did make me chuckle Linda about Anthony!! I do feel quite nervous when out and am hoping it Will improve.
        thanks everyone. Xxx

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          #5
          And A&E did say the concussion will make me feel more unsteady so am sure when that's totally gone my confidence will improve.
          sorry to moan. Am feeling sorry for myself which is pretty crap given what others are going through daily on here.

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            #6
            Zante I used trekking poles before MND because going up hills was my favourite past time. When my balance became a problem I started using one of my poles when out and about locally. Then two poles, then a three wheeled walker and then a four wheeled walker. I’m wheelchair bound now but still able to transfer from my RR chair to my powered
            wheelchair using my walker. I hope that your swellings are now gone and stitches healing well. Love Lynne xx
            ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

            I'm staying positive and taking each day as it comes.

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              #7
              Personally I can only see the ground in front of me so I've given up walking outside. Even indoors I shuffle round like a 90 year old! Sadly this keeps me from being bona fide! πŸ˜‰πŸ˜πŸ§“πŸ˜˜xx
              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                #8
                Currently Matthew I can only see my cheek in front of me cos it's so swollen it sticks out below eye !
                Lynn am sorry to read your account of the progression and how you had to adapt to different aids. I do see a lot of locals using trekking poles when I walk my dog up on the moors. The uneven terrain is proving a little difficult and so a walking pole for general balance is something I am going to look into.
                Lynne unfortunately the swelling is not diminishing in the slightest so I phoned for advice and they said if Monday no improvement then go to minor injuries . Will see how it goes. Thanks for replies as always. Xx

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                  #9
                  I understand I truly do but sadly what we have has only one ending. If you want to to stay mobile for as long as you can then the best thing to do now is as little as possible. We will not get better my friend. πŸ˜‰πŸ€—πŸ€”πŸ»xx
                  Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                    #10
                    Hi Zante...I am so sorry you're battered and bruised. You are more than entitled to feel very sorry for yourself.

                    I dont know if it will help you but when I was walking my physio provided me with "foot ups " They velcro on to your legs and through laces on trainers to lift your feet if you have foot drop. I also had some to go round bare feet for indoors. I used them with sticks and then a rollator.

                    Take care and rest up whilst you heal,
                    Love Debbie xπŸ˜˜πŸ€—

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                      #11
                      Similar to what Lynne K said above - I had trekking poles from my mountain walking years, which I now use as walking sticks.
                      A useful tip for me was to put my hands through the wrist straps so that my weight is supported by hanging from the wrist straps rather than having to have a tight hand grip on the handle (left hand grip weakness has started for me). Most conventional walking sticks do not have wrist straps, and rely on hand grip.
                      Hope you get over the bumps and bruises soon.
                      Hi, I'm Eddie.
                      Started with wobbly left ankle in Nov 2020. Diagnosed 22 Oct 2021, confirmed by 2nd opinion 4 days later.
                      Still walking and talking, and wondering what the future will bring.

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                        #12
                        Zante I'm sorry to hear about your horrible fall. They really knock your confidence. I started with hiking sticks before I knew what was wrong but rapidly changed to crutches as they gave me so much more stability and support. Not saying that is the best solution but it worked really well for me as my legs were so weak and my balance terrible. You can also get some fancy ones that support you all along your forearms (expensive though!). Like Deb I used a foot up for my left foot drop.

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                          #13
                          Originally posted by Zante View Post
                          Am feeling sorry for myself which is pretty crap given what others are going through daily on here.
                          OK, we'll have none of that Zante 😏 It's all relative - we all had mobility issues to some degree and most of us had falls, so we all can identify with how you're feeling now... πŸ€—πŸ€—πŸ˜˜
                          ​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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                            #14
                            Am sorry I haven't worked out how to quote someone so this is going to be a bit all over the place message!
                            Matthew I been thinking along opposite thoughts and always assumed to be stronger and have less problems with muscles in limbs, the more I do I thought would slow the weakness down. I don't have any atrophy that I am aware of and none of the neurologists I seen have mentioned atrophy but just weakness in leg. So I was thinking the more walking I do the slower this will get worse. Maybe not then. Last thing I want to do is speed this up obviously!
                            I haven't heard of foot ups before. I like the sound of the walking poles with handles.
                            I am finding it hard to adjust to doing less activity etc. I don't know whether this is all denial or not accepting my body can't do what it used to. But I get upset thinking about what I was able to do and compared to now. I know that isn't helpful. But this last fall has really shook me up and knocked me backwards. Am only mid 40s and always been an active athlete. Need to adjust my expectations.

                            I just also want to say a big thank you to everyone on this forum. The advice and support that is given. As well as the fun and games, even for people who don't part take or post, it's a safe place to read and learn and feel not so isolated. So thank you everyone . You are all incredible. Xxx

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                              #15
                              And thanks Ellie. You always make me smile on here which is not a common occurrence lately!!! Xx

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