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What’s something you wish that people around you knew about Parkinson’s disease?
Parkinson’s can feel really lonely. It can be difficult to navigate the disease without a community that truly understands what you’re experiencing.
What’s something you wish that people around you knew about Parkinson’s disease?
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10 Replies
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Parkinson’s cough.
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Hi Mary – Beth. I live in a small village in Staffordshire England. I have found that the average person knows nothing about Parkinson’s except that you shake a lot. I have my tremor in my feet. My toes never stop twitching. I have to have Botox injection into the soles of my feet every month. I have had PD since I was 47 that was 20yrs ago. I can’t stand noise anymore because I now have Tinnitus. That alone drives me nuts. I have over the years withdrawn from society. I am tired of explaining my illness to people who don’t matter to me. If one more person asks me if I am sure I have Parkinson’s I will scream. PD sucks and that’s a fact. I hope you have good friends and family around you. Never be too proud to ask for help. People like to feel helpful. The biggest mistake I have made is that I am too independent and now people have stopped asking. My wife works. I spend most days on my own. Just me and my dog Norbie. The phone has stopped ringing. Nobody calls round anymore. A victim of my own making. Try not to build walls around yourself. God speed Mary – Beth. Geffino.
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I really feel for you and Shakey. When even nurses don’t know what’s going on it’s a bad sign. I always thought Brain Disease/Disorder was better to describe PD rather than Movement Disorder. It sounds to me like you ,as do I , suffer from many things that cause great pain physically and emotionally. Calling PD a Movement Disorder to the outside gives people a one direction thought. Anyway, I just wanted you to know I hear you. Hope today is a good day.
Toni
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Hi I’m 70 years old. I have been living with Parkinson’ for 20 years. What I wish people would realize is Parkinson’s effects your whole body. I was in the hospital recently and a nurse told me to role over. That is something I can’t do . I told her I can’t I have Parkinson’s . She replied Parkinson’s is in your hands . I didn’t have that nurse again.
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Hi Shakeybud, I just want to say how awful it was to read that your nurse knew nothing of Parkinson’s. This is very disturbing as I have read in numerous places that those of us with PD have a difficult time in hospital because of nurses, or whoever ,do not adhere to our meds schedule. PD is very misunderstood and I fear many doctors as well don’t have enough information. That’s sad and frustrating. I do think it may be beginning to change as Iateley I see more and more people with PD speaking out that it is not just a movement disorder. I think it should be called a Brain Disorder. Take care,
Toni
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Hi Toni thank you for the kind words. I agree Parkinson’s called a movement disorder is totally wrong.
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Hi Mary Beth, It’s been a while. Glad to see you are still very much involved.
I wish people knew it’s a brain disease and causes pain and suffering in many ways other than our motor systems. Our quality of life, for many, is not not so good. Basically it attacks your whole body.
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I wish family members understood the impact of stress and how it affects Parkinsons’s disease. Raising a 17 year old granddaughter by myself is difficult enough at 62. Add in the age gap and gender differences and Parkinsons’s and the equation gets extremely difficult.
I get frustrated when she does or doesn’t do things that she knows I am going to react to. It makes me feel like she doesn’t care. I have tried to explain to her over and over. I have encouraged her to read about and research Parkinsons’s. The stress that results is debilitating at times. I’m tired of searching for the “why’s” of her behavior. It only seems to worsen my symptoms.
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Raising a teenager at any age, fully healthy, is difficult, especially one with trauma from parental separation, no matter the cause. Boundaries are important to keep although the kids will push them and test them to no end. You can only control how you react to their outbursts and breaking those boundaries. Working on your stress response will be much more fruitful than trying to control her actions. I know from personal experience that it’s not easy and can be very debilitating when you fail, but it’s the only thing in your control, and practice helps with the little things, so the big things, you know what to do to control your reaction. Stress makes my symptoms worsen as well, i had a room mate that constantly crossed boundaries, she was generally kind and loved cleaning so that was convenient but when she did cross boundaries the stress it created was overwhelming at times and I lost my temper. Near the end, I was able to stay calm and handle it much better, and after she left and asked to come back, I had to do the hardest thing ever: say no. That caused a lot of stress as well, but I was able to deal with it because it was my decision and my choice. You are doing a wonderful thing raising her, and when she is older and can look back, she will see the sacrifices you made and honor you. But that comes later in life, and there is no immediate solution. I wish you peace and happiness in every corner you can find it.
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I wish people understood blank affect. There are times when I space out, and the look on my face is totally blank and frowning unless I am consciously telling myself to smile. I have been accused of being on drugs or misusing my prescriptions. I have videotaped myself, and I have seen it, and it’s profound. I wish I could naturally smile all the time I just can’t and showing excitement and surprise looks mundane. It’s not how I feel, it’s just how I look. People don’t understand that, even though I don’t understand it, but it’s real, and it affects my relationships with loved ones.
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