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I also have muscle spasms and shaking.  I first noticed the shaking shortly before my diagnosis in 2015.   I have IBM  (inclusion body myositis) it too is a rare form of MD.  My shaking or spasms can happen in my arm’s or leg’s and usually when I am tired or I have over done it.   Stress and having a cold or sickness also affects my muscle…[Read more]

Though I can’t use my legs and have limited use of my hands and arms, I don’t like to be described as bound to my wheelchair.  If someone asks what is the correct way of describing me (not an invalid please!), I am Philip, I have some physical impairment and use a powered wheelchair to get about.

My hands don’t tremble too much, but they often “forget” that they’re holding something and drop it. They don’t have much reliable feeling. I have a service dog that I have been working with for most of the last year. She already has learned how to help me up when I fall and right now we’re working on picking things up that I drop. That will be a…[Read more]

Pete, I have a similar situation in that all my tests always come back normal even when I had my mitochondrial sequenced to look for genetic markers of my disease. I’m glad you finally found a doctor that diagnosed you and your sister. That was very nice of your friend to take you on as a patient as well. Sometimes, when we’re so close to our bre…[Read more]

Barry, I agree that a doctor only has so much knowledge. They can only do what they can within their wheelhouse. But I do think there is an unfortunate amount of physicians who will not admit this and turn the blame towards their patients. However, these horrific circumstances have made me thankful for the wonderful, motivated and go -getter…[Read more]

Pete, I never related steps as an analogy to disease progression but you’re right, it truly is.

Pete, this is a great method for teaching people about our so personal relationships with our mobility aids. We depend on them to give us back our quality of life.

Dani, I’ve recently discovered the term “ambulatory wheelchair user” which I think describes our type of wheelchair use to a T. Using a wheelchair for long distances and a longer period of time while we can still use our legs.

My mom does this too. She keeps a stash of generic cards to give people since she nor I always have the time or energy to go pick out a card. Sometimes I buy cards off of Etsy but since their usually handmade they can be a bit on the pricey side.