Dear Mr. Fox (it feels odd calling someone six years my junior “Mister”, but I can’t think of anyone who deserves the honorific more than you do, sir):
I was just sitting and watching MSNBC. My eyes wandered to the crawler below the main screen and I saw the words “October is .”
We just got home from Milwaukee the other day, visiting my 80-year old Mom who broke her leg feisty old thing, we had to almost coerce her into going into rehab to get her strength built back up. While there, we saw the fountain at the art museum. The water was colored pink for Breast Cancer Awareness Month.
I watched my beloved Green Bay Packers lose in overtime yesterday to the Washington Redskins. Everyone on the field was wearing pink to commemorate Breast Cancer Awareness Month. Even the referees had the pink ribbon behind the NFL logo on their hats.
Any given number of products advertised on TV promise donations to one Awareness group or another. Here in the DC area, we just had our 3-day Susan G. Komen Breast Cancer Awareness Walk.
I pray that medical science someday finds a cure for this cruel disease which has affected family members and friends of mine.
But Mike (may I call you Mike?), where is OUR “Breast Cancer Awareness Month?”
I know April is officially Parkinson’s Disease Awareness Month. But where was the awareness? Where were the marches? Where were the calls for support? Where were the pleas for donations to your organization or to the National Parkinson Foundation or the American Parkinson’s Disease Association or any ONE of the numerous PD awareness groups?
Where is OUR “awareness,” Mike?
If I can share a bit of my own story I was diagnosed with PD in January 2000. I was working talk radio in Naples, Florida at the time and went public with my diagnosis on the air the next morning, using your brave example to I hoped at the time raise awareness. For the better part of seven years, “having Parkinson’s” was more or less just a concept in my mind. I didn’t really start suffering significant symptoms until late 2006. In June 2007, while an employee of the and doing research on the benefits of clinical trials, I found a for Deep Brain Stimulation in Early Parkinson’s Disease being conducted at Vanderbilt University. I volunteered, passed the screening and was one of 15 people randomized to the surgical group. I had my main surgery on June 13, 2007. There are 15 others in our group of “brain buddies” randomized to the “control group” continuing their medication without the surgery, to be used as a measurement against those of us who had the surgery. The hope is that DBS when done earlier in the course of the disease will serve as a neuroprotective and therefore delay maybe even halt or reverse the progression of the disease.
I still work for the NIH, but my symptoms make it necessary for me to work from home. I don’t have tremor or dyskinesia, but I do have great difficulty walking, I freeze frequently and fall occasionally. I have developed a neurogenic stutter, which is LOTS of fun for a 30-year broadcasting veteran. But with good audio editing software, I get by and continue to make podcasts for the NIH Clinical Center.
This past April, I asked in my blog (http://parkinsondiary.com) “WHERE’S THE AWARENESS?”
If I may be allowed to quote myself…
April is National Parkinson’s Disease Awareness Month. So, why the lack of media stories about Parkinson’s? Where’s the “awareness”? Why are my fellow activist Parkies being met with blank faces and silence when they contact their local media outlets asking for a story, a feature, a report of SOME kind about ?
My cynical opinion?
We don’t have a “sexy” disease. There’s nothing attractive about Parkinson’s. We drool, we shake, we walk very slowly, we fall, we break our hips, we get pneumonia, we die. If this started happening to 20-year olds on a regular basis, you damn BETCHA it would start getting some serious media attention.
But Parkinson’s is typically a disease of aging. It doesn’t have the devastating quality of Alzheimer’s where we keep our bodies but lose our minds. We keep our minds but lose our bodies.
We just don’t have an ATTRACTIVE disease. The money demo in the TV world is the 25-40 year old group. Testing shows that these younger folks don’t really like looking at older people anyway. Add some drool, some shaking, some shuffling, some slurred speech, and you have a real tune-out factor with these folks.
We’re just not CUTE enough. Since this disease typically strikes after age 50, it’s rough for to hold a telethon to get folks to cough up cash because they feel sorry for us. The typical, ill-informed reaction to someone with PD is NOT, “Oh, that person is sick. I want to do something to help.” The reaction is, “Oh, that’s an old person. I hope I don’t get like that when I’m old.”
We’re just not TRAGIC enough… like a celebrity who jumps a horse over a hedge, falls and breaks his neck. We have our examples, of course, with young, vibrant, tragic Michael J. Fox. And we all know that no longer floats nor stings. And then, there’s NBA star , but he hasn’t really shown any signs of the disease yet. But we also have Janet Reno, who is still joke-fodder for the right wing. We have , a dead terrorist. We have Billy Graham. Old. We had . Old. We had Adolf Hitler. Evil. So MJF carries the celebrity load, the “Champ” does what he can, and Brian Grant is just getting into the act. We don’t have anyone from “Twilight” coming down with PD. No one from “Avatar.” No one from “30 Rock.”
Our shaking, drooling, shuffling, slurring, pooping and peeing ourselves, choking on food and drink, falling and slowness is seen by the uninformed as just a natural part of getting older.
Now, if we had a RESPONSIBLE media that could take its eye off the bottom line for a minute, we COULD get a good public service campaign going. I mean, they’ve got a good one for the ASPCA now with the sad doggies and kitties and folks are sending money THERE to help. But the media knows that sad doggies and kitties will move people. Shuffling, drooling, slurring older folks will just make people change the channel. Folks get SAD when doggies and kitties are mistreated and uncared for. Folks turn away when faced with images of middle-aged to elderly folks who pee their pants.
So what about it, Mike? What can we do? Why is it that no matter what kind of fuss we try to raise, you and Muhammad Ali (and now Brian Grant) are the only people in America with Parkinson’s disease at least as far as the national media is concerned? Why is there no nationwide, concerted effort to raise awareness, to help you and the other wonderful organizations fund and find new and better treatments, and perhaps a cure for this horrible affliction? My own efforts writing and self-publishing three books on the subject and donating 100% of author proceeds to research have thus far netted just a bit over $200. I have widgets on my site where folks can donate directly. I volunteered for brain surgery, and now I’m trying to raise funds so that Vanderbilt can expand their Phase 1 clinical trial with 30 people to a nationwide Phase III clinical trial, multi-center, involving hundreds if not thousands of younger folks with PD. I feel like I’ve done my part, and God knows I want to do more.
I can’t snap my fingers and demand TV or print or web media coverage. Hell, I spent hundreds on press releases and they resulted in one live radio and two internet radio interviews. I’m just a civil servant who gets funny looks in the grocery store because of my walk and the scars on my bald head.
Where’s our Jerry Lewis? Where’s our Susan G. Komen? You are our hero, Mike. But you can only do so much as you progress into your 20th year with this beast. Who can we find to lead us? Who can we find someone with a national spotlight who will draw attention to the 1 million of us in America with this disease, the 50,000 new cases that will be diagnosed this year, and next year, and the year after that and the year after that?
I’m hoping you can use your influence to convince someone like that to pick up our banner and run with it. I have no idea who that would be. I think it is fair to say you know a LOT more famous people than I do. But we need someone that folks can point to and say, “that person makes me want to help find a cure for Parkinson’s disease.”
Otherwise, October will continue to be Breast Cancer Awareness Month, while April slogs along as African American Women’s Fitness Month, Amateur Radio Month, Autism Awareness Month, Cancer Control Month, Child Abuse Prevention Month, Confederate History Month, Emotional Overeating Awareness Month, Global Child Nutrition Month, Fresh Florida Tomatoes Month, Irritable Bowel Syndrome Month, National Child Abuse Prevention Month, National Pecan Month, and National Straw Hat Month.