I'm No Michael J. Fox, But...

Tonight on Frontline (PBS) or online you can watch Dave Iverson's "My Father, My Brother and Me." If you have Parkinson's disease or know someone who does, I recommend it highly.

You'll see some amazing progress in medical science and as a result of individual determination. Some people with PD just keep on going almost as before. Others are harder hit and must make extensive adjustments. But most travel a similar path weaving through a myriad of possible or probable diagnoses, and ultimately, if fortunate, finding helpful doctors, family, friends and a way forward.

Among them is Michael J. Fox who has done great things for Parkinson's research and encouraging those who have it. When he says he wouldn't go back, that it's a part of who he is, you have to marvel. He's ahead of me in positivity. I'm still in the "I'd have to think about that" group when asked if I'd take life without PD if given a chance.

But, even so, I have a few thoughts additional to the documentary that may be helpful:

(1) The brain can learn. It can forge new pathways. And so there is much to be said for people with PD taking up a creative activity. For me it was surprisingly painting. And certainly blogging keeps the brain searching for the right words - exercising in an unintentional quest to beat back the cognitive effects of PD. In a way I can thank Hillary Clinton, Barack Obama, John McCain, Sarah Palin, the whole cast really, for creating such intense feelings that had to be put into words.

(2) Every PD patient experiences it differently. Few are climbing Mt Everest. But most are doing something special within their limitations. The only way to understand people with PD is to listen rather than insist they be cheered or prodded to meet an artificial standard. It isn't constructive to tell a person with PD, as I've seen done and heard at workshops, "Oh, we all forget things," "Just get up and keep moving," "Everybody loses their balance," or "You look pretty good to me," especially if on that day the amount of forgetting is intense, the ability to move barely there.

(3) Doctors know less than we'd like to think. I'm not insulting them, here. It's just a fact most admit. And I'll share a little secret. The battle for research funding is brutal. And that is as it should be in order to make progress. But, if your doctor denies what you're saying, doesn't listen, seems disinterested or too busy, then brilliant as he or she may be, it's possible that you are outside of his or her realm of interest. He may be saving his time for patients who fit certain research criteria. You need a doctor who does listen, care, and help. You certainly can find such doctors at grant seeking, publish-or-perish institutions, but it's worth making sure you get one. Am I saying that some doctors turn away patients who don't yet have classic symptoms and are as yet outliers or ones in which they have no research interest? I'm saying I hope it's rare. And those who do so should make sure such patients get good care.

(4) And that brings me to something I'd like to pass on to Michael J. Fox even though he is already sensitive to patients. We could use more funding for training neurologists to communicate. And not only so they'll be nicer people. They need to learn more from patients if a cure is to come sooner rather than later. I was once in the room with a doctor who took a call from Michael J. Fox. He was listening attentively to him. That was encouraging. But he came back and did little of that with me. I moved on. Should have done so sooner, but at least it happened. And I found a great doctor.

These are just a few observations from the trenches. I hope they help. Sometimes a little bit more information can create small miracles, as we wait for medical science to deliver the big one.

Dr. Reardon also blogs at bardscove where there are more thoughts on getting good health care.

Comments

[Anne Dunev - Huffpost Blogger]

With all due respect to Michael J. Fox, and all the sincere researchers, perhaps it is time we started putting our money towards prevention, instead of seeking the illusive Holy Grail of a cure that never happens. How many diseases are we raising money for now? But we never look at how the disease took root. Of course, there is not much money in prevention. After all, it might be as simple as avoiding poisons like the artificial sweetener in the diet soda that Mr. Fox has promoted.

[neurologymatters]

We need all resources available : prevention, diagnostic tools, treatment(s), support for both phsyical and emotional issues, and a cure.

The first step is to never give up hope for a great Neurologist. The merry go round is not unusual, but persevere and believe in yourself.

The notion of not seeking a cure is not acceptable. If we do not try to cure any disease, we are failing ourselves and future generations. Failure is not an option.

[PlaceboStudman]

Dr Reardon,

I just wanted to say, great article. I watched the PBS show intently, as a man with a chronic disability (spina bifida) that I have been told could turn terminal at any moment. I'd just like to add to your point 4, in training neurologists to communicate. The truth of the matter is, we need to reorganize not only health care, but health care education. And that includes more classes in psychology, sociology, and general bed side manner.

As an advocate for the disabled, I devised an experiment for a lecture class taught by one of my friends. The exercise is based on the now seemingly standard exercise of "disabling" student doctors, residents, etc for a period of time, to try to make the doctors empathize with the patient. But, it didn't take me long to realize that these doctors could not, and would not ever fully comprehend, let alone understand the struggles people faced when living with disability. The key becomes, don't deal with the disability, deal with the person. Treat the individual symptoms of each person, and don't focus so much on group studies and statistics. We are individuals, and each individual acts and reacts to their condition in a wholly unique manner, and doctors need to be taught to treat the uniqueness of the individual, not the commonalities of the disease.

[Katie Hood - Huffpost Blogger]

Hey Kathleen,

Great post. All of us at The Michael J. Fox Foundation were really impressed by Dave Iverson... and his thoughtful approach to documenting the different aspects of living with PD and research toward a cure.

I couldn’t agree more with you about the value of information sharing for scientific progress. To that end, I wanted to mention to you and your readers that at 6 p.m. this Monday (February 9), our Foundation is holding a Research Roundtable event in Atlanta. For the first time, we’re Webcasting the event live so that anyone, anywhere in the world, can participate from their own computer (including asking questions to be answered live by our expert panel of top neuroscientists).

More information is available here:
http://www.michaeljfox.org/newsEvents_mjffInTheNews_article.cfm?ID=288

All the best,
Katie Hood
CEO, MJFF

[Kathleen Reardon - Huffpost Blogger]

Katie: Thanks. I'll be listening in. And thanks, too, to MJFF for this and all you do.

[Kathleen Reardon - Huffpost Blogger]

Carey: My art website still has a return e-mail or my USC e-mail. You can click through to "Painting Doc Workshop" on the word "painting" in this blog or google those three words to get to the first e-mail. I'd be delighted to hear about progress in the area of communication with neurologists. Communication is at the heart of discoveries and I can't see how we can advance PD research without doing it better. It's my field, so I'm sensitive to the issue, but the PD patients I meet are keenly aware of how much they have to offer and how unwelcome the input often is. Thanks, K

[indigogo]

hey Kathleen - I corresponded with you a couple of years ago about PD; I just saw your comment on the PBS Q&A after the Frontline documentary. Your thoughts on funding training for neurologists to communicate better is right on the money. I'd like to talk to you about what is happening in the Seattle area and interactions (good!) with the MJFF and others on this topic. How best to reach you (the email address I have for you is old). Thanks - Carey Christensen