I know, it is not Thanksgiving Day yet! But I have to share this story. Ok, so I forego going to church yesterday so that I can get up early to do my Thanksgiving dinner shopping. Well , I don't really go to church much, but it sounds good, right? I always have to bundle up when I go to almost any grocery store because once you hit the dairy, meat, frozen foods, or produce department, you start freezing! And when that happens to me, my tremors kick in, and I immediately start shaking. (Yes, I do take my sinemet before venturing out in public), Anyway, as I head to the checkout, another shopper taps me on the shoulder and says to me, "honey, you are so tiny, if you gained some weight, you wouldn't be shaking like a leaf!!" Of course, my first instinct was to tell her she needed to go on a diet, but the nice person in me looked at her sweetly, and said "I have Parkinson's disease, and besides that, it is cold in here!" And she said, "Oh lordy, you should be home if you are sick, because the rest of us don't need your germs!" And again, a million evil responses passed through my skinny little head, but I looked at her and responded, "I am just thankful that I am able to get out, and don't you worry Parkinson's is not contagious!"
My point in sharing this story is that education is important, and we need to stand together in educating those around us, including family and friends. No one understands PD like we do, but I believe we need to let those we love and those we don't even know that PD is tough, but we are tougher!
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Written by
Carolinagirl123
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I know exactly what you mean. I want to take the people that don't have a clue what it is like and say stupid stuff and just bop them on the head.
My daughter-in-law's mother said to me when I was first diagnosed that I should not worry because she knows someone that has had it for 14 years and is just fine and can do everything. I asked about this person because I know most of the people she knows and it turns out she was talking about someone that was never diagnosed with PD but has a slight hand tremor and no other symptoms. They just don't understand!
I know, and I have friends that wonder how and why I am so thin, and I tell them my body burns off calories all night, and they say they wish they had PD, and boy do I want to slap them!
Years ago I volunteered with a local Parkinson's organization. I was delivering some printed material for an event we planned to the organization's office which was in the basement of a nearby hospital. I got onto the elevator with a physician. He asked me where I was going and I told him I was going to the Parkinson's office. His response was "that's a terrible disease. I would never want to have that." My initial impulse was to start coughing uncontrollably and then through the coughing say that they have now discovered that it's contagious. Then my better nature took over and realized that there was no reason to make him uncomfortable because he did not realize that I had the disease. One of my great fears is that one day I will lose this filter and everything I think will come out of my mouth.
We were in Walmart one day we had brought our 11 pound miniature poodle with us. A young man came over and informed us that dogs were not permitted in the store. After he walked away I said to my wife that I wanted to tell him that our dog was a guide dog for me. When he asked why I was carrying him I would have told him that I didn't need him for distance, only for reading. I embarrass my family enough with the things I say intentionally. If that filter should ever go, look for me on an ice floe somewhere in the North Atlantic, assuming there is still ice by that time.
I did the the filters thing and now I am on the other side. I was introducing family at my Grandfather's memorial and I could not remember the names of actual family.
Well I am only a carer and sometimes I feel like putting my hands around a persons neck and shaking some sense into their stupid little closed mind brain, brain????
Its even worse with the dementia element, "don't worry about it I am always forgetting things", yes well you are stupid but my husband is not, lodges behind my teeth. I feel much better for unloading that, thank you
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