“But You Don’t Look Sick?”

[Farooqji]

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.

parkinsonsdisease.net/livin...

[bassofspades]

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.

[Astra7 in reply to bassofspades]

Me too. My husband makes no concessions. It’s very frustrating as he has no idea how hard simple tasks like chopping veggies are.

[bassofspades in reply to Astra7]

Simple tasks like getting keys into and out of your pockets!!

[Astra7 in reply to bassofspades]

And turning clothes right side out!

[bassofspades in reply to Astra7]

I cant stand folding laundry. Wifey thinks i'm faking this. I can not do it. It takes me hours!

[UMass67 in reply to bassofspades]

Or clicking my seatbelt in place-sigh.

[bassofspades in reply to UMass67]

Yes!

[UMass67 in reply to Astra7]

I’m so new to this. I was having chopping problems too, not realizing it was a symptom. Fortunately my husband is ok with helping.

[nellie58]

I am sure it is meant as a compliment. I wish people said that about my husband still.

[glenandgerry in reply to nellie58]

Me too nellie58

[ddmagee1]

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.

[PDGal4]

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.

[ddmagee1 in reply to PDGal4]

Absolutely! I do agree with you!