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    #31
    Originally posted by denise View Post
    Could velcro some slippers or sandals to the foot plate?
    Thing is, our wonky feet can't plant flat on a surface, they turn inwards and on their sides proper spaz-like πŸ˜‰πŸ€­

    Have you nothing more interesting to contemplate πŸ€” such as who will be the next PM 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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      #32
      I have no excuse I'm basically contemplating. (ie doing nothing but contemplating sounds like I'm doing something) I'm making a list for care home manager - Stephen's little annoying ways on one list and what she has in place for residents on the other? We have a choice of 2 homes, one I prefer but I haven't been able to look, so dependent on our wonderful physio to video both. Shes a real gem. Nurse said this morning she'd been to favourite and she gave it thumbs up. So I'm on a guilt trip but know I really need a rest. 😐
      when i can think of something profound i will update this.

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        #33
        Go for it Denise, you definitely need and deserve a break xx
        Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

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          #34
          Ellie / Elsie - your solution to footplate issues sounds interesting... usually I wear my slippers and then it's not too bad, but I do knock my feet sometimes. I'm going to think about cozy solutions ready for winter.

          Your description of our feet made me laugh too. That is so spot on. My right foot will still sit pretty flat and I can almost see it look disdainfully at my left foot being so weird.

          denise I think the respite options are being thoroughly vetted so will be brilliant for you and Stephen. You do an amazing job and it isn't easy. It is a well deserved break x
          Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

          Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

          Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

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            #35
            Definitely socks off during the day. Noticed its socks on early morning but still warm at night.
            when i can think of something profound i will update this.

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              #36
              denise my house was built in 1860 so its freezing most of the time. So socks on in house. Sandals later outside πŸ˜ƒ
              Diagnosed May 2021 bulbar onset als.

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                #37
                My daughter had these lovely cord trousers on the other day that I was admiring. However they were far, far too long for me... but I had a thought... I could sew the ends up and line them with fleece or something then my feet would be really toasty!

                My daughter has probably hidden the trousers 🀣
                Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

                Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

                Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

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                  #38
                  I'm a bit late along the trail of 'socks off' - but I have used a Revitive foot exerciser since my right foot decided to become an ice block and have to say it does a good job of keeping the circulation working. (I wish there was one for my hands!). I had severe swelling of my right foot after being in hospital 2 weeks (which they would do nothing for) and using this plus my son giving the occasional foot massage when I got home worked wonders. It goes everywhere with me now as it can be used via the internal battery too. My whole lower leg gets an exercise workout which makes me feel so much better.

                  Also, I read after getting my diagnosis that acupuncture can help. I eventually went to one that was recommended by someone else with mnd and even the acupuncturist is amazed at how my foot responded. It is rarely more than slightly cold or swollen now. I don't know how it works, but I'm told that my body responds well and I'm so glad I tried it.

                  I use a cheap and cheerful hot water bottle foot warmer during cold spells and found it is amazing at staying warm for hours so can take it out when in my wheelchair or scooter to warm my hands or feet.

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                    #39
                    Cinderella that is so helpful. I might go googling see if I can find acupuncture clinic near me.

                    My feet have just started swelling.


                    I am also glad of your tip re foot warmer.
                    Diagnosed May 2021 bulbar onset als.

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                      #40
                      Cinderella what revive model do you have please? Some are priced at Β£300 is that right.
                      Diagnosed May 2021 bulbar onset als.

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                        #41
                        shelly21 It's the revitive medic, it was about Β£275 in argos when I bought it this year about Feb/March and you can claim the vat back. I had previously been using one given to me by family, but it was quite old and the cable failed. This newer version is much improved and I have also tried the pads supplied on my shoulder/back area to treat pain there. It really does work better if you use handcream or body lotion on the soles of your feet first as dry feet don't pick up the impulses as well. I do 45 minutes first thing in the morning and have only got up to 40 strength which seems to be perfect for me. I then use it at odd times through the day, they recommend no more than 6 x 30 minutes each day. It is quite an investment and if you know anyone with one then it would be good to try out first? If you look online there are recommendations who shouldn't use it too, depending on what else you have going on.

                        My specialist mnd nurse said she knows someone who uses a vibration plate (that you stand on). I tried one out years ago at a spa day and now they are reasonably priced will consider getting one once we have moved. I can't stand unaided but you hang on to a handle so will be able to manage. Just another option to consider. Most gyms have these now where it could be tried out maybe?

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                          #42
                          Just se you text I think it a good I de

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                            #43
                            Nothing on my feet for a while and I've encouraged Stephen to do the same. Hes very keen to put his slippers on but I know he only wants them on because he thinks hes going out for a fag. No way can I get him down 4 stairs so I have to let him smoke in the front room. Thing is he loves finding things for me to do. Now he can see his feet he wants his toe nails cut. Trying to get so I can cut them. Trying to see to cut them - glasses for TV and laptop but none for toe nails. Then trying to get off the floor after I've cut them! πŸ˜• should have left his socks on.

                            Its cooler at night my feet felt cold. Lucky I have a fat cat to warm them on. 😼

                            when i can think of something profound i will update this.

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                              #44
                              denise you make me laugh. The other thing about cutting their toenails is the scrabbling around trying to find the one that flicked off somewhere across the room.
                              Carer for husband diagnosed with ALS April 2021. Hand onset. PEG fed, completely immobile, communicates with eye gaze.

                              Respiratory function - COΒ² Up

                              No speech but sense of humour still fully intact.

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                                #45
                                Really need to wear a stab vest and goggles. There should be protective clothing designed for toe nail cutting. πŸ€“
                                when i can think of something profound i will update this.

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