Parkinson's Disease Community

Dear worn1,
Thank you for your note. You are right, there are many questions I wanted to ask my patients. The one I am most interested in has to do with a newly diagnosed patient. What is the best thing to encourage a patient just receiving this diagnosis to help him or her, begin to understand and accept this reality - and help them move through this critical step?

Dr Stacy
When I was diagnosed I was thrilled. I was so far along I was ready to committ suicide. I had a long talk with God. I told him I could not go on this way any more. I was falling could not use my right hand/arm my sight was affected and so was my memory. the pain was also becomming unbearalble(SP) That day i saw a different GP and she told me I had parkinson's and I needed to go to a neuologist. I hugged her. The nuerologist started me on the regiment i am still on.
Later as the news sunk in i went on a crying jag. Fear of the unknown had set in. I started my research and did my own experiments. I believe the key is excercise and avoidance of negative situations. So far so good. I do not belong to any support groups.nor is my husband involved in my treatment. He is fighting cancer. The people at work watch out for me.
The 2 dogs I have are my therapists.

So you have my background and how I handlel it.

What I am trying to tell you is each person is different. Everyone has to come to terms with the disease in their own way. I f your patient is not ready to accept his/her diagnosis
at that moment give them time. It is going to hit and hit hard. Once this happens you can help. go over the information again. stressing the advances being made. have the history of the disease available and web sites they can research.
One web site you might give is VIARTIS Offer to have someone in the office same age and same stage they can talk to


Hopefully our community will have ideas you can use.

w

Well, said, worn1. I also was RELIEVED to get the diagnosis of PD. By the time my neurologist suggested it and then I was confirmed by a noted movement specialist, I was so frustrated that no one could put the pieces of the puzzle together. Finally, it seemed that I wasn't going crazy. The diagnosis of PD gave me something to hold on to and to sink my teeth in.

I have already been through agressive treatments for breast cancer, so this diagnosis was almost small in conparison. Everyone deals with these things very differently. The health care professionals need to allow us time to absorb the dx and have us return for another office visit a week or so later for questions that have popped up. encourage your patients to take a trusted person with them into the appointments so that two sets of ears can hear the information because, believe me, the patient isn't really understanding what is said.

Also, if the experts in PD can do some educating of the general practitioners in symptoms of the disease. I have had doctors say to me "well I don't see a tremor" which they feel is the cardinal sign of having the disease. I could have most likely been correctly diagnosed a few years earlier if my doctors understood what my body was trying to tell them,

Also, this site means the world to me! Thank you SO much for all of the valuable information!

lovedogs1955
We had parkinsons for a long time before being diagnosed. I wonder about the "younsters" and how they handled the diagnosis. the parkinsons patients who were diagnosed with just a tremor or problems writing. at what point did they accept their diagnosis? Did they decide to take meds right away or wait and why did they wait?
lovedogs1955 I think in a way we are the lucky ones to be diagnosed so late. We have experienced what lays ahead unless more advances are made. Since I have learned about the disease, read about the advances and experieced what could be my future I ihave no fear. Where as those who have not been through what we have have reason to fear parkinsons. What so you think?

w

Worn1, you make sense with your statements about us being diagnosed well into the disease. I also have always been very up front and honest when anyone asks questions about why I wear a brace on my leg, or struggle to find the right words to say, etc. I even tell the cashiers that I am slow with my money because of PD, and then they don't seem to be so impatient with me. Since both of us are nurses, I think that makes us deal with this mess more head on.

Dr Stacy
I'm sorry you did not recieve more responses. I had to stop and think how to answer your question. It was never a matter of accepting the diagnosis for me. It was a matter of learning about the disease to understand what I was dealing with. I already knew what it could do to my body. I believe the more you know about what is attacking you the better you can deal with it. The old saying hold your friends close but your enemy closer applies here. The better you know parkinsons the better your chances of defeating or slowing it down.
Keep asking your questions. I will respond and I think others will when a question comes up they feel confortable asking.

w

The last word should be responding not asking
w

Dear worn1 and lovedogs1955,
Thank you for sharing your stories and kind words. There is a wide gulf between "giving" and "receiving" a diagnosis. I have been the giver on many occasions, and never quite realized the extent of the relief you have felt - just knowing.

I will need to think about this for a while, but think this may be an interesting educational opportunity - for doctors and patients.

hello, dr. stacy --

i had diagnosed myself with parkinson's before i went to my dr because of my smaller and smaller handwriting plus tremor, so i wasn't surprised when she agreed and sent me to a neurologist.

when the neurologist agreed, i was terrified. however, she emphasized to me that people with parkinson's can live a long time and that there were meds to treat (but not cure) it. this helped.

then i began finding every parkinson's-related website i could, and i read and read and read. i suggest that perhaps you could give the newly diagnosed a list of the parkinson's-related websites you know of and find credible; in the alternative, you could encourage the newly diagnosed to look for those websites. in addition to the education/organization websites, forum-type websites (like this one) are tremendously useful and can be found by googling (forum parkinson's).

i hope these ideas are what you were looking for. and by the way, thank you again for your support of this community; i know you have many responsibilities. believe me, you are appreciated!

-- susie margaret

Dr Stacy
It is more than just knowing. It is finally some one is llistening. I am not told it is my imagination or there is nothing more I can do for you. Ask some of your patients you have been treating for a while what experiences they had to finally end up with the correct diagnosis. I think you will be surprised. I work in health care and i was not taken seriously. Just imagine patients who do not work in health care and how they must feel to know there is something wrong but deaf ears on the health care provider side.
w

Thanks again, for your kind words and advice. Maybe I am not too old to learn new tricks!

Dr Stacy
you listen to the same questions over and over yet you do not ignore or reply i have addressed that earlier. You are taking steps to understand more than just the disease. You are trying to learn about the patient with out being intrusive. I say you are learning and your patients are very lucky.
Any more questionsl
w

Dr. Stacy, of course, the first thing that is popping in my head today is that I am wondering what type of CEU courses are available for health care professionals. Before I had to retire from nursing, I had written several on-line courses for nurses. I don't recall ever seeing too much regarding PD. Now that I am looking back at so many of the symptoms and problems I was having, someone with better information might have been able to diagnose me. My Oncologist was totally puzzled after he ruled out cancer spread. My Cardiologist was actually thinking that I might have MS. Finally, I saw a new MD in my Neurologist's office and she is the one that put the pieces together.

I know that my own nursing training was over 30 years ago, but I don't remember learning too much about PD. All we really knew was that patients with it had tremors.

Okay, that's about all my caffiene buzz can handle this morning, Thanks for all of the advice! And, thanks to the strangers on this site who are becoming friends!

Dear Dr. Stacy,

Please look at the post from An_ about her husband (with PD) and his erratic and delusional behavior. I think you should weigh in on the discussion - it is important and one aspect of the disease that is not discussed much. You will see my reply to hers, signed 'gabrielle.' many thanks indeed.