Reactions when you tell people you have Parkinson's Disease?

Posted by kathy49 @kathy49, May 19 10:34am

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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Profile picture for jatonlouise @jatonlouise

@bmfoster You'are fortunate that your friends respond that way -- offer to helpp you . You don't have to be dying to have less energy to do some of the things you've always done before so it's sweet when somebody offers sto water your flowers, knowing that you must take pleasure in having the flowers and that this couldl be welcomed help. I haven't had anyone treate me any differently that they did before they knew about my diagnosis. I've been very pe about it because actually it was a fantasticly GOOD thing that I finally got a diagnosisi afeter chasing it so fiercely for such a long time. becuase then I could get TREATMENT! By the time I got my diagnosis, I had been bedridden and coudl do virtually nothing, not even go to the toilet by myself. I was in TOTAL OFFLAND, every frickin,hour of every fridken day of every frickin week and was joyful when I got my diagnodid because 1 hour after I had my first l-dopa pill I could get out of bed on my own, walk to the bathroom alone, becuse I had been certain that I was dying and didn't know how much more of this what I now know as the dreaded OFFLAND I could take. And I was sooooo relieved to know what I had, and that there was a treatement, and that it worked for me. THe thing I feel sad about is all the time I missed with my grandkids My husband and I used to take turns picking them up after school and I missed a few years ofr that time and now my oldesst is in the Army, the middle one is starting college, and the youngest is 14l That and the worry that haunted my poor huvband as he picked up all the things I used to do whlie worrying about me and seeimg how misserable I was. But those things are over and I'm feeling decent and can do things like go to the pharmacy to obtain magic potions that enable me to continue to delude myself that I'm younger than I am. This PD stuff is part of me now and while I wouldn't have sought it out by choice, it is soooo much better than where I was, I really can't complain. I'll bw 82 in a few months and if I were to die tomorrow, I wouldn't have been cheated our of much. I'm not eager to die,(although I'm growing rather weary of all my friends dying on me. I just think it's rude that they jusst up and die on me when I'm begeinnign to get better and more able to play and they die. I find it meaningful to do do things like sharing the Hospital Guide, knowing it may help someone have an easier time if they have to be i a hospital, or sharing my Nrurologist's advice to let Kiwi friui be the answer to consstipation. and putting my silly nonsense on Facebook., creating a very exclusive club consisting of myself, my granddaughter, and her mother and her other grandma, we are known as the Wild West Women of Berlin, and as our name suggests, we go wilding through our lovely city of Berlin . This involves hitting out favorite ice cream shop and induging in our favorite treats and returning home to long naps. We are just that WILD. People see the 4 of us and run for cover. They shouldlln't fearus (although if they were to try to se parate us from our ice cream, we might have to get brutal with them.

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I appreciated your response and share the frustration in getting a diagnosis. It took many years to put it all together for me and many, many other PD patients. Glad to hear you are doing better and enjoying life again.

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Great positive outlook! When my husband was diagnosed, he looked at the doctor and stated, "Well, look at it this way. I can make a milk shake without a blender." Today, after his last spine surgery, he is up and running, a total mover and a shaker. He doesn't stop. Carbidadopa Levodopa, or Living La Vida Loca as he calls it, did not work for him, but Ropinirole has. My advice is to make life happen, keep moving, and stay positive. Oh, and when someone says it is not possible, prove them wrong and don't accept no for an answer.

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