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    #16
    TinyLady I'm sure I saw cloud on tomorrow's weather forecast but still hot. Probably will be very humid which is even worse. Going to be fun.
    when i can think of something profound i will update this.

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      #17
      Scorchio!!
      Diagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.

      Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!

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        #18
        denise I only read today re dehydration and swollen feet. Last week, the nurse couldn't get bloods from me and told me I was dehydrated.

        Elsie a.k.a Banksy will be telling me off πŸ˜’.

        TinyLady my swollen feet have only started over the last few days. Mobility is getting poor and ankles don't seem to bend etc x
        Diagnosed May 2021 bulbar onset als.

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          #19
          shelly21 i hate the swollen feet and ankles. Mine are awful, swell up by lunchtime and turn blue. They refuse to go down no matter what. When I do stand it feels like they might pop they feel so tight. I was told it was lack of mobility that causes it (by my brother - a school caretaker...)
          Diagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.

          Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!

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            #20
            I think I was bitten yesterday and my foot has swollen up. And yeah I bet what ever thought to bite me is dead. 🀨
            when i can think of something profound i will update this.

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              #21
              Originally posted by shelly21 View Post
              Elsie a.k.a Banksy will be telling me off πŸ˜’.
              I certainly will πŸ€¦β€β™€οΈ How many times have you heard me bang on about hydration πŸ€·β€β™€οΈ 🀣🀣

              Originally posted by shelly21 View Post
              I only read today re dehydration and swollen feet.
              Yup, water isn't just for quenching thirst, it's essential for so many of the body's functions.


              Onwards and upwards Shelly 😘😘
              ​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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                #22
                nag nag nag. its all we get.
                when i can think of something profound i will update this.

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                  #23
                  Sheesh, you try your best and it's flung back in your face πŸ˜‰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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                    #24
                    When I go to clinic I don't drink much water because the loos are unsuitable ( ironic in an MND clinic) They struggle to get blood as I'm usually dehydrated.

                    Still wearing socks🧦 with a sundress in spite of some funny looks..I can't get shoes on and I don't like bare feet on my footrest even though it has a sheepskin lining. Just read this back and I sound very princessy πŸ‘‘ xx

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                      #25
                      Princess Deb how did you get a sheepskin footrest? Sounds very cosy!
                      Diagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.

                      Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!

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                        #26
                        Hi TinyLady.. I'm sorry because I don't think you have the services of a wheelchair technician. My princessy footrests were fitted by wheelchair services because my feet keep turning on their sides.

                        We should all have this service xxx

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                          #27
                          Deb - I do have wheelchair services.... (about all I do have) and sideways turning feet too (so irritating) I got something to stop my legs falling off the back of my footplates, but no sheepskin luxuries...

                          I'm going to see if I can get some of this on my footplates. I get bruises sometimes from them... so this sounds a great solution. I might yet feel like a princess!
                          Diagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.

                          Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!

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                            #28
                            I have attractive ankle/foot splints to stop my feet turning on their sides they also correct the footdrop. I can't stand or transfer without them.

                            The downside is I don't take my shoes and socks of in hot weather as putting them back on everytime I need the loo is a pain in the a***!!
                            Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder and hand function. Trying to be positive 😺.

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                              #29
                              Originally posted by TinyLady View Post
                              I'm going to see if I can get some of this on my footplates. I get bruises sometimes from them...
                              A pauper's solution to a princess's problem???

                              I have the same issue but just needed something easy to slip on and off the footplates for when I'm not wearing shoes, so I cut out 2 footplate-sized pads from an old pillow, put them inside sleeve parts from old PJs, and slip them onto the footplates when needed.

                              The sleeve is the perfect size and tight enough to hold them in place - happy feet, happy Princess Elsie πŸ€£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.

                              ​

                              Comment


                                #30
                                Could velcro some slippers or sandals to the foot plate? Could interchange them. Not that I've tried it, I was just sitting here contemplating lunch and tootsies.
                                when i can think of something profound i will update this.

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