Ah I just wanted somewhere to vent a bit. In 2 or so years I’ve gone from walking the dog easily 5km+ and now down to 1.5km slowly and with a foot up splint. I recently got diagnosed with PPMS. Today walking was especially hard, had to stop lots and breathe. Tripped and almost fell and had to lean on a garden wall for a few minutes to relax before walking the last couple of hundred yards home. Just a sad slow day.
Let’s hope for a better day tomorrow.
Have you tried FES? I have found it a lot more helpful than my foot up. The foot up
was really helpful when I first developed foot drop but as it became more advanced I switched to FES.
I am lucky my hospital loans out FES and supplies all the electrodes through Odstock Medical. The Odstock site gives a good explanation about the use of FES and who it is suitable for. Unfortunately not all hospitals will pay for this equipment and although it can be purchased it is expensive.
Sadly I can no longer walk my dog , something I really miss!
I was only diagnosed very recently and was fitted with the splint to help before I’d even seen a neurologist. I’m hoping the Walton Centre can get me something else but the splint works well in work as I work with high ABV alcohol and I don’t think I’d be allowed to use it in the high risk areas (no phones etc type of areas) but thank you for the suggestion I’ll ask the specialist when I see him next
I really feel your loss and frustration Lizzie. It can be incredibly hard to deal with these harsh changes. If I dwell too much on how things used to be I get very upset. I think this is normal; however I now try to concentrate on getting the best out of each day, I deliberately used the word best rather than most, this is because sometimes for me the best can include having a day off and recharging the depleted batteries / muscles for another great day.
I respectfully suggest that you don’t push yourself so hard that the risk of falling is increased. I do use FES which doubles my range from virtually b*gger all to a bit more. With FES my fear of tripping is also reduced. I really hope that you have a better day, it is good to vent the frustration and then find another way to cope better.
I wish you all the very best.
PS I do not think there are any specific spark risks with FES but understand that having batteries, wires and circuits this need to be checked. The engineers at (removed by moderator).will be able to answer those questions. (removed by moderator).
Hi Lizzie, it’s awful, as I remember how rapidly my PPMS went. Within 2 years I was ina wheelchair. Havent been able to walk for many years now…
Do take care chick.