BREAKING THE NEWS?

For some of us a diagnosis of Parkinson’s is devastating. For others it is more neutral.

PM is thinking of putting together a book(let) entitled “Breaking the News”, aimed at physicians/neurologists and intended (1) to show them the impact a diagnosis of PD has on the recipient, and (2) to show them what they do well and how to do better.

We would be very interested in your individual experiences and thoughts on how to improve the process of telling a person they have PD.

Was it reassuring/upsetting? How could the doctor have done better?

General/specific thoughts. By all means respond (by message to me) if you prefer to remain anonymous.

Thanks

Jon

20 Replies

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  • That is a WONDERFUL idea!!!!

    I feel I could have been told in a more caring way...he seemed "excited" that he was the one who solved the problem.

    He gave me MJF web info and told me to go to that sight to understand what PD is.

    I have learned more about PD on this blog than any where else. I really wish it was available.

  • Great idea! My dx felt very neutral. The aftershock was intense however and I was not prepared. It was like falling off a boat and trying to locate a floatation device. The last 4 years I was completely alone with my PD. I reported physical changes/difficulties to my neurologist and followed his suggestions, but the personal emotional impact of PD went unchecked and unaddressed. This site is my floatation device!

  • Giving complete information to the newly diagnosed is so important I can't believe someone hasn't thought of it sooner. Kudos to you. My neurologist gave me two invaluable books. The first is entitled "A Patient-Expert Walks You Through Everything You Need to Learn and Do the First Year of Parkinson's Disease". It is truly essential for those newly diagnosed and I followed day by day, then week by week and finally month by month until the end of the first year. I was so shaken by the diagnosis. these books literally saved my mind. .Jackie Hunt Christensen is the author. Jackie was diagnosed at he age of 34 and so this devastating story is one we can all relate to in some way. The second book given me by my neurologist is entitled "Parkinson's Disease: 300 Tips for Making life Easier and the author is Shelly Peterman Schwarz.. My doctor also gave me an outstanding book on nutrition and any soft cover information the PD association publishes. I hope this helps and good luck in your endeavor.

  • WOW....I wish my doctor had given me those books especially the first year.

  • Your Dr. sounds wonderful!

  • Dealing with Parkinson's can be a burden to other people. This site is The Best Place to Go To For Support and Information Regarding Parkinson's Disease. When I come to this site I feel as though I am among friends.

  • I totally agree... just wished there was a site to help us with dealing with financial burden/ early retirement etc.

  • Great idea. When a neurologist said after seeing me for five minutes said: "I know what you have, you have Parkinson's," I was in shock for the next three weeks. I had no where to go, and of course told my employer the wrong things. This in turn created financial hardships down the road. I started an instruction sheet such as you talked about and will send you a copy when I find it again.

  • Good idea. I sought out literature and was told "you're doing great, don't let it progress." which was encouraging but baffling.

  • "Don't let it progress???" Huh? Like stop time or something? Baffling!

  • Good idea. When I was first dx the doctor said, "Right now there is nothing we can do. Go home. When the tremores worsen come back and we'll try some meds." A lack of compassion I'd say.

  • My experience, hmmmm the first neurologist, I don't recall the words, I do recall my daughter came with me and there was steam coming out of her ears, she was so angry at his cavalier and rushed presentation she wanted me to never consult him again. He gave us 5 minutes and an Rx for one of the dopamine meds. As it happened I moved to a different state shortly after the diagnosis. My reaction, I don't think I took it as reality, I knew little about PD and was resistant, for quite a while, to learning anything about it.

    In the challenge of finding a neurologist I learned that PD "may present differently in every one diagnosed and treatment is by trial and error." I selected the neurologist who spent as much time as necessary in the first visit to have a realistic picture of my medical status. He was patient and he asked questions! It was fortunate that my son and family live in the same town, a medical visit requires a plane ride and includes a family visit.

    I could go on, but for now, as far as I am concerned the necessities are 1. keep it simple for the first visit, we overload easily, 2. show some interest in my situation, it is new for me, altho not for you, 3. be available for questions, e-mail takes only moments and answers, even not so happy ones, are helpful. (You will quickly identify the "problem" patients, and be able to rein them in.) 4. Give the patient an idea of how best to reach you and what to expect working with you and your staff. ex: I answer questions after office hours, or please put some information in your message. almost every doctor suggests the ER if you are having a crisis. Doctors need to develop a toughness to survive, but do hang on to your humaness!

    Good luck. You have my support in producing a much needed item.

  • Yup - The first Neurologist I saw was so rude, he turned his back to me and said, "You have a little Parkinson's" prescribed a med that did nothing but knock me out and sent me on my way.

  • Having "a little Parkinson's" is like being "a little bit pregnant". Either you have the beginning symptoms or you don't. Your story is one I hear so often and it really upsets me. Whatever happened to "I am not sure what you DO have, but let me check this out further and if necessary, send you to someone who is more knowledgeable about your symptoms?". This is how I found my current neurologist, he is wonderful. Nothing happened instantly and it has taken 2 years to sort out my meds. We finally have the correct combination of medications for ME. We are all different and it takes time and a doctor who is not in a hurry, and the patience to work with you, to sort out the correct treatment. Good luck to all of you who are struggling with

    medical professionals who don't seem to care. I don't kid myself that I am cured, but we have slowed down the progression of the PD.

  • my neuro here in france was very nice and told me i could phone him anytime i needed to -which i have done several times over the 2 years + that i have been dx- but i am no better -in fact i am a lot worse but just dont know what to do ...

  • It is so sad the information we are given when we are first told of our disease. For me being so young, in my early forties when I was diagnosed, they had a hard time figuring it out. My local dr. just plain didn't know, told me I may just be a shaking lady. What is that??? How sad. I know it is a tough disease to figure out but if you don't know don't say something stupid like that to someone. They have no idea what we go through....

    So to make a long story short...I am fighting back. I like in Central Illinois and have decided to have my 1st Annual Parkinson's Awareness Fundraiser. Yes, it is to raise money but also to educate and raise Awareness about Parkinson's. You don't have to be "old" to have it, black or white, but be nice to us and just help us.

  • There is only so much you can absorb after you hear the words "Parkinson's Disease" for the first time from a doctor. Written information/ resources are essential as is support group names, via internet or local group,

    The support group that I helped found delivered in person and sent out information packets to many doctors and hospitals about our meetings and availability to talk to PWP but never got a response as far as I know.

    This is a life alterating diagnosis. Not like carpal tunnel or minor back pain. We can't change a doctor's personality but maybe something that delivers to them tools along with personal testimony as to how a patient feels once they leave the doctor's office after hearing those words. We all remember that day, moment, and the feeling of numbness, panic or worse. I would be glad to help in any way to make it easier for even one person that faces that moment.

    Thanks to your team that founded this organization. You rock!!

    Aloha, Jill

  • My GP had suspected Parkinsons and sent me to the neuro for a second opinion, so I was kinda psyched up for the news " Yes, you do have Parkinsons". I thanked him for his time, which he said was an odd response, but really he was giving me the answer to lots of problems I'd had. I kept my composure till we were in the car going home. Luckily I wasn't driving as I sobbed all the way. The neurologist explained about the stater pack of Requip, but that was all the help I got.

  • I felt relieved, we chased this diagnosis for 10 years. I finally found a PA that could think. She listened and sent me to a Movement Specialist. He checked me out and told me the news. I think I surprised him by being happy. But for 10 years I could not explain why I fell down or would feel so drawn out that I could hardly move. This was good/bad news.

  • I wasn't given any info, but he did give my the name of some good sites on the net. I found a good caring MS and hopefully will keep him for a while.

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