The best of both worlds a physician's battle with Parkinson's made him a believer in integrative medicine.

http://www.thefreelibrary.com/The+be.....-a0199622815

Dr. Bernard Feinberg is having lunch at an outside table at his favorite Hillview Street restaurant. It's a light affair of ahi tuna atop fresh salad greens. He sips his iced green tea and sets it down.

for a story which is a must read for all of us

Imad

This story is something I can relate to....though from a different angle. PD has a way of changing your life and thinking in a profound way. I have posted it a while back. Here I go again....
I have been in research for almost 15 years, 10+ years prior to my diagnosis with PD. I was committed to research, passionate about my work and believed I was doing my best to help a patient. However, I had no clue about how a patient feels about his/her future nor the for he/she feels for a cure. When faced with questions like "How long before it gets to the market?", it being a drug, therapy, vaccine or a new finding.... The standard answer was "well, research takes time, it has to go through FDA approvals......blah blah...When I look back at my responses, it was essentially telling a patient (AIDS, in this case), forget about a cure, not in your life time. I didnot realize the impact of my statements and how frustrating it can be to a patient.

Being diagnosed with PD, now I am at the receiving end, with every failed phase 2 or 3 clinical trials, precious time is lost. Now I understand the question from a patient or a care partner or a loved one 'when do I get the treatment you just talked about?" There is nothing like this experience, talking and thinking that I understood the impact of a incurable disease and actually experiencing it myself. I feel the impact of sentences (like "AIDS is a complex syndrome and ..........") I wrote in my meeting abstracts, papers I published. I feel the urgency for a cure......When hear the standard answer which I used to give.......I shake my head and bite my tongue.

If anything good came out being diagnosed with PD is that I have become more open to different ideas and accept others beliefs. I learnt that science is not the only answer to cure, there is much more to living with something like PD. I still have faith in scientific research, continue to do so and hope for a cure. At the same time what is considered "alternative therapies" have become as main stream as Mirapex etc., for me. I have come to accept that people have different ways to cope and deal with their illness. There is no right or wrong way to do it.

Thanks for posting the story and listening to my story!!
Girija

Girija-

You are in a unique position to do a great deal of good. Would you consider writing your transformation up in more detail and directed at nt only PWP, but particularly at the science and medical communities? And once done, put it under a Creative Commons type of copyright and release it so that we can spread it around?

There are very, very few in your position. Drawing on two medical cultures - one the newest and the other the oldest. Have experienced the role of both patient and scientist. Quite a bit to work with there.

I don't know if you have run into this or not, but Anne Frobert quickly found that her colleagues unconsciously shifted their view of her to that of "poor patient" from "my colleague" and were by default dismissing her observations of her condition.

You have something unique and very powerful there.

Thanks Rick,
I like the word 'transformation", it describes my status quite well. It has been quite a challenge to go thru this transformation and the experiences both professional as well as personal have been unique to say the least. I must admit, going back to old world medicine and practices was much easier for me because of my upbringing. Its sort of finding my roots.

I think each of us have our own unique stories to tell as we cope with PD.
Anyway, short answer to your question is: yes I would be happy to put together my thoughts on paper, my two cents worth contribution to PD.

Girija

Rick I absolutely agree about Girija's post, and her position, this is a really valauble contribution, and have asked if she would allow it's inclusion in the book, as a means of getting the message across...

Thanks for both your posts, this is a crucial bridge of understanding that needs to be built upon.

Lindy

As I mentioned to Girija recently, people in her situation who operate in both medical and patient communities, may be able to act as a "trojan horse" to present their broader experience to their medical collegues. Let's hope her message is heard and that the medical folks don't stop treating her as a knowlegable peer.

Katherine