Michael Church :
Occasionally I am surprised when I meet someone new and explain that I have Parkinson’s disease and they will say, “But you don’t look sick?”. I never really know how to respond.
Michael Church :
Occasionally I am surprised when I meet someone new and explain that I have Parkinson’s disease and they will say, “But you don’t look sick?”. I never really know how to respond.
I get that from my own wife! She still expects me to carry on like a healthy person. The only way i know how to respond is i tell her if you and i switched bodies for just 20 minutes youd understand, then you would crap your pants! Thanks to things like meds, amino acids and b1 we at least look ok.
Me too. My husband makes no concessions. It’s very frustrating as he has no idea how hard simple tasks like chopping veggies are.
I am sure it is meant as a compliment. I wish people said that about my husband still.
Tell me about it! One person had the nerve to tell me that I looked so good, that when I complained that I missed a meeting because I was not feeling well, because of PD symptoms, he said it’s all psychological, there’s nothing wrong with you. Now, don’t get me wrong, I’d prefer not to have PD, and I truly wish there was nothing wrong with me. Sinemet masks my symptoms, outwardly. Inwardly, now that’s a different story! Numbness, pins & needles, peripheral neuropathy, sometimes balance issues, constipation, swallowing, etc. are problems that I deal with constantly, every day, but are not that noticeable. I prefer to do range of motion exercises, to keep myself limbered up enough, that the stiffness and slowness doesn’t show much. So, yes, each day is a struggle, at times, and I’m not one who wants sympathy. I do appreciate others showing some consideration and believing me, if they know that I have been diagnosed with PD. I suppose there’s always going to be some people who show no empathy, and make mean remarks. I’m glad that I am still able to hide the symptoms, most of the time, and I don’t go around telling people that I have PD. Usually they find out from others, not me. I don’t like to give it as an excuse, generally, for not doing things; however, if I am having a particularly bad day, then it’s best that I stay home and don’t go out.
This is why I haven't told many people outside immediate family and two or three close friends. Lucky in that after 6.5 years I can still mask my symptoms (slowness/stiffness) when C/L is not controlling them. Lately have had some dyskinesia, a little more challenging to hide. But I don't want to hear other people's opinions, judgements, and expectations.