Walking aids for the armless

[nunhead_man]

Good afternoon all,

I'm sorry I've been a bit absent from the forum but we have been deep in building works having now sacked a contractor who is a complete numpty and are now in the whirlwind of somebody really knows what they're doing.

As the panel will know I am arm onset and my legs are beginning to be a bit shaky. I've already told off 1 OT who provided me with a walking stick which I could not hold because my hands don't work.

So are there any things short of a wheelchair that will allow me to walk around safely when I effectively have no grip?

[Ellie]

I had the same problem Andy, but my balance was shot too, so I ended up in a powerchair which was my only option - things may have moved on, that was 13 years ago.

[Laticsmon]

Hi

I have problems with my hands and being wobbly. I use a fisher walking stick which is more to do with downward pressure rather than grip strength.

not sure if that helps

[Lynne K]

A Toprow walker (if my memory serves me are the most stable out of the two walkers that I’ve gone. I fontina knock if your hands wouldn’t be ok with one but worth a try. My rights hand grip indoors good but I can still use both of my walkers as they have similar handles, Lynne

[matthew55]

I have my very first walking stick and giving it a trial run tomorrow 😁x

[denise]

I have a walking frame for Stephen but his hands and arm strength means it's not going to be useful. Should have thought of that. 😟

[nunhead_man]

Good morning all,

Thank you for your responses – I've got the point that when your arms go that affects your balance – it never occurred to me that arms were important in balancing your body.

I had my wonderful National Health Service occupational therapist around yesterday because I'd said to her that I thought it was time I had a neck collar because my neck gets quite tired by the end of the day.So I am wearing 1 of those as I voice dictate today, standing at my desk.

And she ended up with a rather long shopping list including getting the physiotherapist out to have a look at my ankle as I haven't yet quite got foot drop but my right ankle is quite stiff, She took away the walking stick that I've been provided with as mentioned above and said she thought it was about time we started the process of getting both manual and electric wheelchair so that it was here when we needed it.

One other thing we were playing with is about me getting up and down from a seating position and it is weird but that is quite variable because this morning I could get out of the dining chair by myself where as last night I needed help - Perhaps tiredness is more of a factor as I get deeper into this disease?

Final bit of news is that I had a screaming pain in my right foot after walking up to my doctors surgery 10 minutes round the corner on Thursday last week so we called the doctor out last night, she prescribed antibiotics and a different painkiller than that which I usually use for gout ( and opioid) and lo and behold this morning I've taken no more painkillers my ankle and foot are not shouting at me with pain. No idea what's been going on there as the position of the pain was not 1 which is usually hit by gout but my GP is on a mission to find out.

[Ellie]

... she prescribed antibiotics and a different painkiller than that which I usually use for gout ( and opioid) and lo and behold this morning I've taken no more painkillers my ankle and foot are not shouting at me with pain.

What pain meds are you now on - anti-inflammatory/NSAID, nerve pain etc? That should give you a big clue as to why they are more effective for that particular pain. Also, I don't know why you were prescribed antibiotics, but maybe their effect on any infection is important too?

[richard]

nunhead_man Hi Andy I can understand not thinking that your hands help you balance but then when you think back to being a child when we stood up high on things we would always be moving our arms to keep our balance.

I can understand the getting up from a seat issue. My legs are now shot and I have to push myself up with my arms from my riser recliner seat and grab a walking frame to transfer to my wheelchair. As I get tired, even unknowingly, so say at 10pm it takes far more energy to get ups than it does during the day.

Sorry to hear about the screaming pain in your foot. Was it Tramadol they gave you? I was prescribed that to deal with excruciating cramps/muscle spasms when I have stupidly stretched or twisted myself to reach for something. They are superb but I have had to agree that I only use them for the occasional acute pain as they are addictive.

Richard.

[nunhead_man]

Good afternoon Ellie,

What pain meds are you now on - anti-inflammatory/NSAID, nerve pain etc? That should give you a big clue as to why they are more effective for that particular pain. Also, I don't know why you were prescribed antibiotics, but maybe their effect on any infection is important too?

Thank you - the GP has prescribed dihydrocodeine, which I understand is opioid based. I have taken 2 tablets so far today and am still in some pain – about 5 on the scale of 1 to 10

The antibiotics were Prescribed due to infection being 1 of the 3 guesses that the GP had about why I was in pain, the other 2 being gout (although the pain was in the wrong place that) and my favourite which is some sort of physical damage caused by MND arising from the short walk to the GP 10 days ago and exacerbated today for example by my moving around the house.

Has anyone here have any experience of pain in their feet as their legs began to go?

I do not have foot drop in the classic sense but my right ankle is certainly very stiff and does not have much movement.

[nunhead_man]

Good afternoon Richard

nunhead_man ... the getting up from a seat issue. My legs are now shot and I have to push myself up with my arms from my riser recliner seat and grab a walking frame to transfer to my wheelchair. As I get tired, even unknowingly, so say at 10pm it takes far more energy to get ups than it does during the day.

Thank you for this – so it seems I'm not the only one that gets tired as day goes on.

In terms of symptoms you aare a little ahead of me in that as I am arm onset it is the pushing up that is difficult my legs work reasonably well still albeit they are a little stiff. I have just inherited a carver chair which in case you do not know is part of a set of chairs to go around the table where one has arms as well as legs and this particular one has quite a high back. While I cannot get out of 1 of our dining chairs I can get out of this carver chair by myself at least when I'm reasonably fresh

[Ellie]

nunhead_man I thought you meant you were prescribed a different type of painkiller, sorry, not just a stronger opioid.

Andy, what about seeing a physiotherapist to assess the ankle, preferably a neurological one or at least one who understands neuromuscular conditions. Or better still, at the MND Clinic. It's always better to know what you're dealing with.

I had pain around joints for sure, as weak muscles were not holding joints aligned as they ought to, but I never had pain in my foot proper. When you say your ankle is stiff, is it that the muscle tone is high and slow to respond, or the joint itself is stiff?

I hope you get relief soon. xx

[Deb]

Hi Andy,

I went to the MND clinic last week with a long list of questions. Amongst other things I was given sheepskin footrests for my wheelchair and splints to stop my foot turning sideways in my chair and in bed. I was getting alot of ankle pain and a burning feeling in my feet.

The physios have been out this week to fine tune things and look at further aids to make life more comfortable. ( i feel like a diva !)

I know i am different from you as my weakness is in my legs and feet and I can't move them but I was surprised at how many options there are.

Good luck.
Love Debbie x

[richard]

Good afternoon Richard



Thank you for this – so it seems I'm not the only one that gets tired as day goes on.

I have just inherited a carver chair, I can get out of this carver chair by myself at least when I'm reasonably fresh

Hi Andy I also did this and then when I found it difficult to get out I bought a thick cushion for the seat. No alas Im in a wheelchair.

Richard

[Ellie]

I was given sheepskin footrests for my wheelchair ( i feel like a diva !)

I have been out-divaed, for sure 😍

Are they covers for the footplates and/or the uprights, Debbie, or what?

Also, would you mind telling me which splints you were given to stop your feet turning inwards please - my feet look at each other at this stage!

Thanks.
Love Ellie.

(Sorry Andy for interrupting)