Hi, 1st time on here, I’ve been diagnosed Primary Progressive going back 15yrs. I have lesion on Cerebellum that started with pins and needles in right leg, which has progressed to limited distance I can walk. I’ve come on here just because I’m getting the same sensation in left leg and know there is no one apart from people on here who can relate to the prospect of totally losing mobility. My world is currently along one long road where I live, work and go to pub :o) by travelling up and down via bus. It’s a scary propect losing mobility; I’m 55, healthy, go to the gym every morning before work and as with all of us when sitting down look absolutely fine.
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Hi Steve I also have ppms…25 years now. Mine progressed really quickly. Not walked for 20 years. Cant stand and use ceiling hoists in bedroom and lounge.
Do you live alone? I wouldnt manage as I need help with all personal care, meals and outings.
I live with hubby of 50 years and have carers coming in twice a day and 2 sleep overs a week.
Try using a walker for difficult times.
Boudsx
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I think for many the thought of losing mobility is one that many fear.
It is hard not to project ones self into the future. Whilst future proofing is a great idea, so is focusing in on the moment. Whilst you can stay as active as you can, it will keep you strong for as long as is possible.
My mobility is not great, strangely it is only now that I am at this stage that I am being more proactive. I am looking at going back to hydrotherapy, getting an OT involved back in my care. Others have posted the benefit of having a chiropractor, so looking into that.
There is a wider world out there beyond my street and I intend to get out there. I am just working through how.
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Hi - my partner has PPMS which started on one side in his leg and has now affected both legs, his arms and his hands. If you want to chat I’d be happy to.