My Father, My Brother, and Me

Producers' Forum

Video Stories - Watch short stories Dave Iverson and Michael Schwarz filmed over the past two years while making My Father, My Brother, and Me.

The Conversation Continues ...

By David Iverson on February 4, 2009 12:01 AM | Comments (11)

The live portion of our online discussion has now concluded -- click here to read what our viewers, Dave and PD experts had to say so far.

But we still want to hear what you have to share, too. Click here to post your comments, questions and stories. Dave Iverson and PD experts Ole Isaacson, Michael Zigmond and Bill Langston will check back periodically through next Tuesday, February 10 to answer your queries about PD and the film.

Dave will also be participating in a live chat at at 11 a.m. ET on Wednesday, Februrary 4. Click here to go to the Washington Post chat site.



Don said on February 4, 2009 3:03 AM:

Just watched the broadcast and was both moved and inspired. I watched my dad suffer with advanced PD, while my mom, the principal caregiver toiled relentlessly. As I was diagnosed 6 years ago (although I had suspected and feared that I had it a few years earlier), and am determined that I will neither suffer like my dad nor burden my caregiver wife, I've grown to value and appreciate the beneficial effects of pilates and body rolling therapy on maintaining fluidity of movement and balance. I'm lucky in that my wife, who is both a certified pilates instructor and a certified practitioner of Yamuna body rolling, has worked tirelessly with me to help me maintain myself. I can only echo the importance of an on-going regimen of exercise. For me mixing exerise with the physical therapy of body rolling has helped maintain my movement and stabilize my balance. I'm also fortunate to have found a neurologist, Dr. Daniel Tarsy, who heads the Movement Disorder Clinic at Boston's Beth Israel Hospital, who both explains treatment effects and processes as well as involves me in the selection of mine.
Mark Darcy said on February 4, 2009 7:03 AM:

You can't imagine my disappointment that the forum continued last night past which I could possibly stay up. It is interesting to see all of the comments and the experts advice and knowledge out there for us to use. I was further disappointed though that there was no response to my question on the manganese connection, I am however not totally surprised. It seems to be the hot potato, nobody wants to deal with it. It may just be my perception, because manganese is known to cause my Parkinson's, that manganese may have an underlying connection to most cases or a lot more cases of Parkinson's. One of the interesting things about manganese induced Parkinson's is that it does the damage to the brain and then leaves your system, small amounts over long periods can bring on this disease. I have noticed an interesting attitude towards manganese induced Parkinson's at my local PD group, and in the medical viewpoint. It's as though it's an entirely different entity with little or no connection to the Parkinson's most people know. I think this is a sad fact, since we are looking for a cause and I don't think we should let any stone be unturned. In the greater Toronto area [Ontario Canada] a recent study by a University of Toronto doctor showed a higher incidence of Parkinson's disease on the 401 Highway corridor and in the Hamilton area [steel town] specifically, and the connection to manganese in steel production and in the burning of gasoline along the 401 corridor was indicated. Again I must say though, I really enjoyed the documentary however narrow the view had to be to fit in a one-hour segment, I think most of us who have Parkinson's know there is a wealth of information and ideas out there and no one our segment could possibly cover it all. Thanks again regards Mark Darcy
Paula said on February 4, 2009 4:45 PM:

Thank you for the fine documentary; it was very informative. As an advanced pwp and a seasoned advocate for changes in the research paradigm, I thank you more for the opportunity to interact online. I am a believer in the power of a positive attitude and have immersed myself into the world of pd with specific goals that I intend to reach. [former teacher and big on goals]. However, PD research and development has, for the most part, been restricted to the scientific and industry worlds. Trial after clinical trial fails at phase II, which is blinded, and this is due, in part, to the placebo effect, which is a result of patient expectations and cannot be marketed. I was very glad to hear Michael J. Fox speak about patients having voices, and think there is no easier place to interact than on the Internet. Patients need to be included in the treatment development process. The mind/body connection is the main thing - not stem cells, not growth factors, but the individual patient terrains into which we are releasing these substances, not the least of which is the human psyche. Not only do patients need more conversations with other clinical trial stakeholders; but the conversations need to include multi-disciplinary medical doctors. My hormones shut down in the decade before my PD symptoms emerged in my thirties. My thyroid went hypoactive, along with the occurence of a very early menopause. Naturally I wonder about and suspect a connection between hormones and Parkinson's. This is unique to me. To bring this to the point, patients are controlling much of what is happening to their bodies, and expectations have been proven to affect the outcomes of events, including surgery and medication testing. This is the human component that is missing in the conversation. These conversations are valuable and there are patients who are fighting [it feels like fighting] for the opportunity to interact in finding the cause and a treatment for PD for years. The Internet makes this possible. Your format follows the criteria of what we would like to see more often during clinical trial development and perhaps it is because this event is patient driven, with Michael J. Fox included, that you got it right in this patient's opinion. There is so much that can be done, as you have so movingly shown in your documentary. Hope is imperative and there is good reason to have it. But science statistics have always trumped the human components; while the human component, among them the placebo effect, is so strong a factor that it is contributing to trial failures. I'm hoping for a new paradigm that includes this missing stakeholder, who is kept in the dark, second guessing, and yet has the power to "self- heal" without treatment, empowered only with hope and expectation that is uniquely human.
Mona Johnson said on February 5, 2009 5:47 AM:

Hi Dave, Thanks very much for your excellent program. Like many people, I have a family history of dementia. I've been interviewing researchers and blogging about it at The Tangled Neuron for three years now. I'm also a patient consultant to the FDA for Alzheimer's. I agree with Paula's comment that patient and family involvement and input on research priorities is valuable. I think scientists and people with dementia can learn a lot from each other, using your work as a model. Great job, Mona Johnson Largo, FL
Rick Hermann said on February 5, 2009 9:07 AM:

I was surprised and disappointed that Dave Iverson did not even mention what is currently the most effective bridge technology to help give PWPs a tool that helps reduce disease symptoms and medication side effects for years--until, hopefully, the next Big Thing takes Parkinson's R&D to he next level. Deep Brain Stimuation (DBS) surgery is based on the pre-levedopa surgical "fix" for Parkinson's widely referred to as a Pallidectomy (excision or destruction of the Globus Pallidus), which was non-reversible, and too frequently unsuccesful. DBS does not destroy brain tissue but stimulates it with an electrical charge. The system works kind of like a heart pacemaker. I would hate to think that Mr. Iverson, thankfully in the early stages of PD, regards DBS as not "hopeful" enough. It's not a cure--it doesn't slow the progression of the disease, but it can give long-time sufferers a better quality of life. At 57, diagnosed in 1998, I am six months out from my DBS operation, and for the first time in ten years I am hopeful about my future. Parkinson's eats away at hope as the years go by. If we don't yet see a cure on the near horizon, we have an effective tool to increase QoL significantly for those who's medication has stopped working or creates disabling side effects (one of the goals of DBS is to be able to decrease high medication levels for advanced Parkinson's people). The procedure carries a risk of complications, but it IS brain surgery. Only the patient knows when the cost-benefit equation can be solved for him- or herself. It will be very clear. In my estimation, leaving DBS out of the story was an unfortunate oversight. Dave Iverson's poignant and otherwise informative program focused more on the genetic side of research. But DBS is something available today that actually works. Leaving it out entirely while re-reporting on well-known cases (e.g., the frozen addicts, the monkey experiment about exercise vs. sedentary behavior, the disaster of the first fetal brain cell implants, the Michael Fox story) does not help those who might benefit from surgical intervention supported by incredible imaging technology and a growing number of neuro-surgeons who specialize in using these tools for DBS.
David Clarenbach said on February 5, 2009 11:53 AM:

Dave -- Bravo! On outstanding production. You may remember me as a former member of the Wisconsin state legislature. I've just moved back to Madison after 13 years in Washington DC. I had no idea that you had moved to San Francisco, nor that you had Parkingson's. My father had Parkinson's for 17 years, so your program had special meaning for me. Thank you so very much for this extraordinary public service and my very best wishes to you and your family. ~David
Mark Darcy said on February 6, 2009 3:05 PM:

Hi Dave, I still have no reply from you from the two comments I posted to your show, and I understand that it must be hard to get back to everybody who comments on the show. Please have a look at this though. This is on Michael J. Fox's website, "February 6, 2009 Study Reveals Connection between Genetic and Environmental Causes of Parkinson’s Disease" it's a very interesting read and you may find it interesting to go back to my comments on the show and reread them, I would be very interested to get some feedback from the experts that you have assembled. Thanks so much, we enjoyed the show, Mark and Kim Darcy
Jeannie Larcombe said on February 8, 2009 8:44 PM:

Thank you for the informative documentary. It covered a lot of information we all need to hear. What is didn't cover, though, in my opinion was educating people to the symptoms of Parkinson's. My husbands symptoms started 8 years ago, maybe more, but he was not diagnosed until November 27th when I took him to the ER because of his terrible painful spasms. It turns out that is called dystonia. I thought Parkinson's disease was about shaking. I had no idea of all the other symptoms and I think public education is sorely lacking. Even in the medical profession it is lacking. We kept going back to his doctor over and over again wondering what was causing him to be depressed, slow moving, drooling, confused, shaky hands, poor sleep with crazy dreams and then finally the kicker of Dystonia. He said it felt like he was being tassered. Even the neurologist we finally got into see didn't realize how bad he was. It wasn't until people witnessed his attacks that we started to get serious help. Now his constipation is causing him so much grief, He was hospitalized last week because he was so backed up that his stomach could not absorb his sinemet. That is another horror story. I had to chase down the nursing staff every three hours to get his sinemet because they were too busy to get it too him on time. Eventually I carried our own bottle of his meds and gave it to him rather than go through the stress of trying to get it from the staff. By the time he left the hospital 5 days later they knew a bit more about PD. Please, more public education. Thanks, Jeannie
Dave Iverson said on February 8, 2009 9:05 PM:

Hi David: Of course I remember you and your time in the Wisconsin legislature! Nice to hear from you, David, and I hope all is well with you.
Dave Iverson said on February 8, 2009 9:10 PM:

Hi Mark: Sorry to be slow in responding. It is indeed a really interesting study. The way in which genetics and the environment work together is no doubt going to be a crucial area of inquiry in the years ahead. We'll keep trying to get one of our experts to respond, but they've been really swamped. Thanks so much for your interest and pointing me to this study. Dave
Dave Iverson said on February 8, 2009 9:23 PM:

Hi Rick: Thanks for writing in and sorry for the delay in my response. We received several comments about DBS in the live post broadcast chat and tried to respond to that issue. You're completely right that DBS can be hugely helpful and we thought a lot about focusing on it in greater detail. We actually did reference it at the beginning of the film, but in the end we elected not to devote a full segment to it for the same reason we didn't focus on medication. And that's for the reason you suggest: DBS doesn't slow the progession of the disease. As you note, while it can be hugely helpful in ameliorating symptoms, it doesn't affect the disease course. For that reason we chose to focus on those efforts that might lead in that direction. But I take your point ...DBS is an extremely important tool and can make a huge difference in people's lives. Perhaps we should have done more, but given our time constraints that was our rational for proceeding as we did. Many thanks for offering your comment. Dave I.

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posted january 29, 2009

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