I’ve developed a new symptom whereby when standing my knees give way causing me to dip down and backwards. Neuro has prescribed a course of Methylprednisolone and I’m seeing her tomorrow. Hoping steroids work but they didn’t last time. Not sure what my options are as walking already difficult and now standing is painful and I’m worried I’ll fall. I use one stick and braces to walk not keen to use two as I have weird left hand that doesn’t like to hold things for long plus my knees will still dip causing pain to thighs and back. Can physio help or any other tips? Thank you if you have any ideas. Feeling a bit low x
I don’t have any miraculous suggestions, just a bit of fellow feeling. My knees sometimes just give way too. At times it’s just one, but it can be both together. I’ve hit the floor a few times because of it. But I can only walk a very tiny bit (when I use FES plus a walker), and at the moment it’s hardly at all - just about 5 metres a couple of times a day if I’m lucky.
But, before I had the major relapse that robbed me of walking 4 years ago, I used crutches rather than sticks. You might find this gives you a bit more stability and you are less reliant on dodgy hands to hold them.
I also hope the steroids work hun. sounds like progression. might be safer to use a wheelchair when going out. i know no-one wants to hear this, bt it aint the end of the world, promise.
It has all been so far. September last year I could walk, run, hop, skip, etc! Needed braces in January and stick by May. Diagnosed RRMS in June this year and started Tecfidera in July but not working so changing to Gilenya in Jan. This new symptom has taken me by surprise I must admit. Crutches could be a great idea. Will they stop the dipping? If a chair is what I’ll need then I’ll use one don’t want to give up getting out and about. Have you both got chairs? How did you get/choose one. Thank you so much for listening xx
If you can afford to buy your own crutches, have a look at the http://www.coolcrutches.com/ website. You can get some in different colours, but they’re not cheap. There are plenty of other places you can look. Otherwise, you’ll need a referral to (I think) occupational therapy for some nhs ones. Mine are/were purple.
The next step up from crutches is often a walker, just round the house even. I have a Topro walker - it has a seat integral to it, as well as a basket for transporting things round the house. Not that I use the seat really, but often people do. You can get cheaper walkers, I broke the brakes on one I used to have, they were a bit flimsy really and I used them a lot. Walkers do make you feel a bit self-conscious at first, maybe it’s the thought of being an old lady with a walker!
I use a manual self propelling chair provided by wheelchair services. If you find you need a chair, that’s the place to start - get a referral from your neurologist. There are plenty that are available to buy but probably best to start with to get one free from them, then later if you want / can afford a flashier one, you’ll know what you’re looking for.
Generally, wheelchair services only provide electric chairs for people who can’t self propel and who need a chair indoors and out. I can self propel indoors but need a pusher for outdoors. I don’t actually want an electric chair as it would rob me of the tiny bit of exercise I get just moving round the house. Not that I think I’d get one anyway!
Other people use scooters outside, if you have the space to park one and can afford it it might be worth considering.
I’m seeing my fab neuro physio 4th Jan. She’s referred me already for a FES and to the orthotics dept as they no longer have suitable braces for me in the therapies dept. Mind you this was before this new symptom so not sure if these will help now. I know she’ll advise me on crutches eg height etc so will once I have an idea I will then buy some fab ones! I have a lovely collection of sticks already and am quite fond of them- all different colours. I’m guessing she will also do a chair referral if I need it. I’m hoping not yet. Stupid isn’t it. It will be what it will be. I’ll ask the neuro for some advice re managing the pain in my back from the dipping and saving myself. I take Gabapebtin for neurological pain but in guessing this is more muscular. Thank you xx