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Reactions when you tell people you have Parkinson's Disease?
This is not a question so much as a chance to share experiences. My doctor warned me about the reactions I would get. I am 77 so it is not an early diagnosis. He was right. People have all sorts of ideas about the disease most of which are not accurate. I have mostly only told other medical professionals as it is important in terms of what I am taking and how it might impact other conditions I have. The nurses' reactions are sometimes shocking. "Oh I am SO SORRY. My grandpa died of that" and similar. I really get offended and correct their thinking. I have told few friends and mostly just family. Do other PD patients get those kind of reactions? I find it easier not to tell people now that the tremor is controlled. Any input on this.
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@emmit
While I am not young what I have learned is more symptoms may not be experienced f or many many years. My father had PD and many family members never knew. He took the Sinemet and PD never really impacted his daily life.
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5 Reactions@mavish Boy I know what you mean on the Cancer feeling. I had uterine cancer back in 2020 (yes during covid before vax) and boy the reactions I got on that and even still do if I mention it. I just say it was treated and I am fine and that is the truth. Mostly I never mention it.
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1 ReactionHello @jdabb0tt, and welcome to the PD support group on Mayo Clinic Connect. I see that this is your first post. Would you like to share a bit more about your PD diagnosis? When I was first diagnosed, I was having difficulty with balance, foot dragging, and a very soft voice.
What type of symptoms led to your diagnosis?
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1 Reaction@hopeful33250 - I experienced a slight tremor in my arm. I consulted a neurologist, who said that I have Parkinson's and prescribed carbidopa /levodopa.
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1 Reaction@jdabb0tt
that is my story exactly. Frankly it seemed a bit too easy. My father had it too.
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1 Reaction@jdabb0tt Has the carbidopa /levodopa helped with the tremors?
@hopeful33250
Yes, C/L seems to help what was a very, very slight symptom.
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1 Reaction@jdabb0tt That is good to know. When I first started C/L I also found it to be very helpful.
I was diagnosed 4 years ago at the age of 68 with a tremor in the left hand which is fairly well controlled with C/L and exercise. My wife was diagnosed 16 years ago at the age of 53 and is doing well following DBS surgery in 2020. Everyone knows my wife's diagnosis but almost no one knows I was diagnosed mainly because I have not told my children yet. I have not shared the diagnosis because I do not want my children to worry about us. We have both been tested and neither have a genetic reason for PD. It is probably environmental, growing up in a planned community built on previous farmland. We are both doing well especially because of daily exercise. We bike, swim, row, do yoga, hike, walk a mile most days, fitness classes and weight train. Exercise like your life depends on it, it's at least as important as the medicine.
In terms of what other people say, educate yourself so you can educate them. Most people die with PD not because of PD. Best wishes, Joe
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