Reply To: Joy Holloway

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8 months ago

I was born in Minnesota too ;-0 a good place to be from as they say!

At least my PT has good neuro training and has worked with other MS patients and Parkinsons. He is scheduling long sessions, 40 minutes, because I’ve explained that what I can do in the morning is different than what I can do in the afternoon or what I can do before walking a block is different than after walking….or standing. As we work through the complete set of PT he is prescribing for the week he sees what my endurance is. Then I can ask him what I should prioritize if I can’t do it all. If I can’t do it in good form should I stop (my right knee starts to cave in when I get fatigued) so I understand when I should stop pushing.

I’ve tried to explain to my husband that all time spent upright is on the clock. If I said I could walk 10 minutes and he stands around 5 minutes first…well then I can only walk 5 minutes. He’ll ask if I can walk a couple blocks and he is catching on that I can walk as long as we get on with it…no stopping to talk, no walking slow in crowds and mincing about, etc. The way has to be flat…as in paved or concrete flat and not bumpy or grassy or soft/squishy. Now that he understands the parameters he is getting better but people unfamiliar with me and my endurance are hopeless.

I’m trying to find ways to be included and have family fun that don’t include me walking a lot or standing around. We’ve always enjoyed going to plays, watching movies, playing games, etc. I want to add bar stools to the kitchen peninsula as that is a family gathering spot where there is a tendency to stand. I think I can enjoy that just as well in a seated position 😉 I’ll also tell them to walk around the park while I take a seat on a bench and read my book. I find ways to give myself a break-