Harvey's Back

INTRO by Adrienne

Some of you here are old enough to remember the movie Harvey (the one with the invisible rabbit), it starred Jimmy Stewart.  It was made back in 1950, but replayed countless times.  Well, Jimmy is no longer with us, and Harvey has finally run out of royalties the movie has earned him and has taken a very unusual job for a rabbit.  He has taken a job as a spokesperson for the Parkinson’s Action Network.  There is only one problem, however, he’s still an invisible rabbit that only certain special kinds of people can see or hear.  Luckily, he found one right here among us, my assistant, Jim.  So here, making yet another public appearance together are Jim and Harvey the Invisible Rabbit talking about PAN.

 (Jim begins)

(To Harvey) Harvey, this is a special group of people, they are the _______________, but you have them at a disadvantage—they don’t know what you are.  May I tell them?   

(To the audience) Harvey is a pooka—a Celtic fairy, given to various acts of mischief and to taking form as a larger than life animal—in this case a six foot, three and a half inch rabbit.  I know some pookas speak to all humans, but Harvey is not always audible or visible to all humans—just to drunkards, crackpots and the like.  So, if you’re able to see him just now, you want to keep that under your hat.  On the other hand, this would be a big step for him, talking to all sorts of people—if he wasn’t so determined to use me for a mouthpiece. 

(To Harvey) So, Harvey, you are back again as a spokesperson for PAN, but some of these folks have not heard from you before, what’s PAN?

(to all)  Oh, the Parkinson’s Action Network, the voice of the Parkinson’s community on Capitol Hill and lots of other places.

(to Harvey) What’s that Harvey?  This is your favorite kind of audience—they’re PIPS.  I get it.  (to all) People interested in Parkinson’s. 

(to Harvey)  Tell the folks about me and PD?  Sure. 

(To all) I was diagnosed in 2009, and started taking the usual assortment of drugs to control the symptoms.  I decided also to work on what my neurologist said was his number one recommendation—get an hour of exercise every day.  So I started working on my overall physical health, things like--getting enough sleep, developing better eating and drinking habits (these are still a work in progress) and getting in the habit of exercising an hour a day.  I took up yoga, pilates and I even Tai Chi.  So, I have really worked on myself, and I feel lots better.  This approach allowed me to keep working for three more years, but I had to stop in the summer of 2012.  So, now you know my story.

But we all have questions about Parkinson’s, Harvey.  Maybe you can answer them.

(To Harvey) What questions? 

1.  Well, for one thing, how quickly will this progress?

(To Harvey) No one knows?

(To all) Oh, Harvey wants you to know research is going to tell us. 

2.  Well, do we at least know how to slow it down? 

(To Harvey) We don’t? 

(To All) Harvey says researchers are getting closer to finding some effective therapies to slow it down. 

3.  I have a trembling hand and leg and occasional loss of balance.  What else can I expect, Harvey?  (pause) 

(To Harvey) You don’t know…(listens) 

(To all) But researchers are cataloging Parkinson’s effects. 

4.  Well, what about the cause of those effects?  What causes Parkinson’s? (listens)

(To Harvey) We don’t know, huh?  (listens)

(To All) Ah, but researchers are working on it.

5.  What about a cure? 

(To Harvey) A long way to go, you say? 

(To All)  Oh, more research is needed.

(To Harvey) Wow, with all this need for research, things must really be clipping along in that arena. (listens) They’re not?!?? 

Is this Parkinson’s Action Network working on it?  (pause)

(To Harvey) So how is PAN working on the problem today? 

Three ways, you say?  What’s the first one?

Protecting and maybe increasing government research funding and expedited drug approval.  Harvey, what does this funding need to be protected from?  See kweh what?  SEQUESTRATION.  Harvey, you must be the only rabbit on the planet who knows that word.  What does it mean?  Oh, across-the-board cuts in government spending, without regard to the importance of that spending.  Is Congress doing this on purpose?  It sounds like they are just not willing to think about which things are the most important.  Oh, they never meant for it to really happen?  But they couldn’t agree on what cuts to make.  Sounds like the Congress we know and love—yeah, the one we elected.  But what happens to Parkinson’s funding? 
A cut of $1.6B from National Institutes of Health and $209M from the Food and Drug Administration.  Why is that so important, don’t the drug companies do that work?  No?  NIH does more basic research than anyone else in the world?  The drug companies don’t get started until there’s a product.  Wow, I’d better be writing my Congressman, and my Senators, too.

But Harvey, why is the FDA funding important?  Oh, without additional monies, promising products will be held up in the approval process as fewer people are around to approve new drug therapies.  I really do need to write my Congressmen.  What about PAN’s other two priorities? 

Making permanent the elimination of caps on physical therapy under Medicare?  How does that work?  (To audience) Oh, Congress enacted caps on physical, occupational and speech therapies back in 1997, but never put them into effect until 2006.  When people objected, they created an exception process, but it has to be renewed each year.   PAN wants to get rid of these caps once and for all.  What’s that Harvey?  We can’t count on Congress to agree on anything year after year?  I agree, except for not applying rules like this one to themselves.  Is there a deadline for reapproval?  By December 31^st.  We’d better tell them to get to work.  Where’s my pen?  That’s another letter. 

What’s the third priority for PAN, Harvey?  Growing the Congressional Caucus on Parkinson’s.  What’s that?  (to the audience) It’s a forum for both senate and house members to increase awareness and keep informed on the latest developments in Parkinson’s issues and research developments.  Harvey, how many members are there now?  A hundred and seventy-two?   Out of how many?  Five hundred thirty five.  We can do better than that.  How many of ours are members (Graham, Scott and Sanford?)  None.  I think I feel another letter coming!  Wait, wait.  You have?  Great.  That will save some work.  Harvey says he has brought several letters you can use to let your representatives know how you feel.  We’ll pass them out now.  All you need to do is write in your name, address and phone number and sign.  Harvey will take care of the rest.

What’s that Harvey?  (To All) He says “please,” and “thanks for your attention.”

HARVEY THE INVISIBLE RABBIT RETURNS

INTRO

Some of you here are old enough to remember the movie Harvey (the one with the invisible rabbit), it starred Jimmy Stewart.  It was made back in 1950, but replayed countless times.  Well, Jimmy is no longer with us, and Harvey has finally run out of royalties the movie has earned him and has taken a very unusual job for a rabbit.  He has taken a job as a spokesperson.  There is only one problem, however, he’s still an invisible rabbit that only certain special kinds of people can see or hear.  Luckily, he found one right here among us, Jim B.  So here, making his appearance with Jim B’s help, is Harvey the Invisible Spokesperson Rabbit.

(To Harvey) Harvey, this is a special group of people, they are the Hilton Head Parkinson’s Support Group, but you have them at a disadvantage—they don’t know what you are.  May I tell them?   

(To the audience) Harvey is a pooka—a Celtic fairy, given to various acts of mischief and to taking form as a larger than life animal—in this case a six foot, three and a half inch rabbit.  I know some pookas speak to all humans, but Harvey is audible and/or visible to only a few kinds of humans—to drunkards, crackpots, rumpots and the like.  So, if you’re able to see him just now, you may want to keep that under your hat.  If Harvey were to show himself to all of you this would be a big step for him, talking to all sorts of people—but he’s determined to use me for a mouthpiece. 

(To Harvey) So, Harvey, congratulations, you have decided to become a spokesperson, but you haven’t told me what for.  Can you tell me now?  For PAN?  What’s PAN?  Oh, the Parkinson’s Action Network

(To all) Uh-oh, now I know why Harvey insisted on tagging along with me to this meeting.   What’s that Harvey?  This is your favorite kind of audience, I get it. 

(to Harvey)  Tell you about me and PD?  Sure. 

(To all) I was diagnosed in 2009, and started taking the usual assortment of drugs to control the symptoms.  I decided also to work on my overall health.  I had listened to what my neurologist said was his number one recommendation—get an hour of exercise every day.  So I started working on my overall physical health, things like--getting enough sleep, developing better eating and drinking habits (these are still a work in progress) and getting in the habit of exercising an hour a day.  I took up yoga, and I even took up Tai Chi with some help from a friend or two.  So, I really worked on myself, and I feel lots better.  In fact, I think that’s what allowed me to keep working for three more years, but I had to stop this past summer.  So, now you know my story.

But the elephant is still in the room, so to speak.  We still have questions about Parkinson’s, Harvey.  Maybe you can answer them.

(To Harvey) What questions? 

1.  Well, for one thing, how quickly will this progress?

(To Harvey) No one knows?

(To all) Oh, Harvey wants you to know research is going to tell us. 

2.  Well, do we at least know how to slow it down? 

(To Harvey) We don’t? 

(To All) Harvey says  researchers are getting closer to finding some effective therapies to slow it down. 

3.  I have a trembling hand and leg and occasional loss of balance.  What else can I expect, Harvey?  (pause) 

(To Harvey) You don’t know…(listens) 

(To all) But researchers are cataloging Parkinson’s effects. 

4.  Well, what about the cause of those effects?  What causes Parkinson’s? (listens)

(To Harvey) We don’t know, huh?  (listens)

(To All) Ah, but researchers are working on it.

5.  What about a cure? 

(To Harvey) A long way to go, you say? 

(To All)  Oh, more research is needed.

(To Harvey) Wow, with all this need to know, things must be going great guns in Parkinson’s research, huh? (listens) They’re not?!?? 

Is this Parkinson’s Action Network working on it?  (pause) What’s PAN’s mission, anyway?  

It’s the unified voice of the Parkinson’s community, advocating for better treatments and a cure.  In partnership with other Parkinson’s organizations and a powerful grassroots network, it educates the public and government leaders on better policies for research and an improved quality of life for people living with Parkinson’s.

So what needs to be done about the research? 

(To Harvey) You say there are three big obstacles to making this research move ahead?  And this is what PAN is working on.    

What’s the number one hold-up?  (pause, listening)

(To Harvey) Oops, that can’t be! 

(to All)  Harvey says eighty percent of clinical trials are delayed due to the shortage of patients taking part?   So, we have met the enemy and it is us.  How do I get into a clinical trial? 

Harvey says there are three things I can do—ask my neurologist about trials, enroll in the Fox Foundation’s new Trial Finder and send some DNA to 23andMe.com for their Parkinson’s genome research project.  I can do those things.  And, what’s that?  Harvey says not to get too excited, researchers are pretty picky about who they want. 

(To Harvey) Wait, you said there are three obstacles.  What about the other two? (listens) Sure, with all this need for research, knowing more accurately how many people are afflicted with neurological diseases as well as the incidence patterns and prevalence of such diseases is critical to fueling further research. H.R. 2595 NNDSSA/aka S425?  What’s that?  The National Neurological Disease Surveillance System Act.  It authorizes the CDC to gather information from existing sources to fill in those blanks.  Where does it stand? It died in Committee?  What has to happen to get it out of Committee?   It needs to be reintroduced, with more than the ninety co-sponsors it had?  Tell me, did Senator Scott co-sponsor while he was in the House?  No, well I believe I do need to write a letter.  What’s the third obstacle?

 (To the audience) OK, OK, Harvey says without answers to those basic research questions I was asking before, products can’t be developed.

(To Harvey) But the drug companies must be working on this research…. They’re not?  They don’t do basic research?  Who does?

(To All)  Harvey says the National Institutes of Health does more basic biomedical research than anyone in the world. 

(To Harvey) And Congress wants to cut its appropriation?  Not exactly?  Congress wants to cut all appropriations by sequestration?  Now, you’re just a rabbit, how do you even know that word?  Oh, you learned it from PAN. 

Now, I need that pen, Harvey.  We need more NIH funding, not less.  I need to write two letters now.  What’s that you say, it’s too late for letters?  I need to call.  How do I do that?  I join the rest of the Parkinson’s community on National Call In Day, February 27^th.   Where can I learn more? 

DISTRIBUTE FLYER ON NATIONAL CALL-IN DAY

(To All) Now, Harvey brought these and asked us to hand these out to make it easier for you to take part in the Call In Day. 

What’s that Harvey? 

(To All) He says “please,” and “thanks for your attention.”

What’s My Story?

Do you know anything about Parkinson’s Disease (also known as PD)?  Well, simply put, certain brain cells produce dopamine, an essential neurotransmitter that controls muscle activity in the body.  With Parkinson’s these cells begin to die off.  Consequently, those of us living with Parkinson’s gradually lose the capacity to produce dopamine and, ever so slowly, our muscle control just slips away entirely.  Its most obvious outward sign is tremors, but it is far more than that.  There are numerous other motor and non-motor symptoms of PD, from stiffness and muscle rigidity to impaired balance, from fatigue and insomnia to depression. 

My diagnosis was made when I was fifty-nine, which makes me borderline early onset.  Most people first exhibit symptoms in their late 60’s and beyond.  My most obvious symptoms were uncontrollable tremors in the left hand and leg, insomnia, fatigue, softening voice and something called “micrographia,” which caused me to write so small as to make my scrawl illegible.  I was a Labor Relations Consultant, meaning I bargained labor agreements, arbitrated contractual disputes, and taught those skills to others in unionized facilities across the US. 

I worked with PD for more than three years, but finally had to stop.  Picture yourself sitting across the bargaining table from someone who could not hold a sheet of paper in his hand and read it for the shaking, or someone who hands you a note in such a tiny scrawl you can’t read it.  Or think what it would be like if the advocate presenting your case was speaking so softly that even a handful of people in a small room could not hear him.  Put yourself in the passenger seat with someone driving who travelled all the time, but could no longer trust his own driving skills due to fatigue and tremor.  Eventually it all added up to not enough.  I was very fortunate.  I worked for a large company that generously provided short and long-term disability coverage and other benefits.  Not everyone is so fortunate. 

Consider these examples.  There are  Moms who want to some day hold a grandchild, people about to retire who hoped to travel, grandparents who need to raise their grandchildren. 

Not all of my experience has been on the downbeat.  I have met people in all walks of life who have had to live with PD.  I know a lawyer with PD who has written a mystery novel with two lead characters, one with Alzheimer’s and one with Parkinson’s.  I have had the great good fortune to find a personal trainer who knows from experience what people with Parkinson’s need.  She also provides group yoga and fitness classes for people with PD and other disorders as a community service.  I have met Tai Chi leaders who have specifically chosen to work with people living with PD in light of research findings that offer evidence that Tai Chi can slow the progression of symptoms and improve flexibility and balance in persons living with PD.  Last but not least, I have been welcomed into support groups in my own area where members share their experiences and, sometimes, just listen to those who live with PD and their caregivers.

But I am here today because medical science has more questions than answers about Parkinson’s Disease.  It is a slowly progressing movement disorder—so slow-moving that many of us dream of a cure in time to save us—but it looks as if we’ll have to give up that dream.  Because, what is amazing, bewildering and just plain scary is that no one can tell us how quickly it will progress, or how we might slow its progress.  Nor can anyone tell what causes PD, much less how we might cure it or stop its progression.  More than a million people in the US suffer from this disease, so you might think that drug companies are researching these basic questions and will find the answers, launching products to make living with Parkinson’s more manageable.  But that is not how it works.  The drug companies don’t begin investing until a potential product has been developed.  Basic biomedical research is provided by organizations like the National Institutes of Health, and the Department of Defense, and through private foundations.  The NIH is the largest provider of basic biomedical research in the world.  Without the NIH, basic biomedical research into curing any number of serious diseases will grind to a halt.

It should also be noted that health care has an ever-increasing share in this country’s GDP, so investment is important.  Such investment will create jobs and make the US a leader in the technology of disease treatment and elimination.  Further, finding cures can reduce the cost of providing medical care, which is a huge drag on our country’s ability to balance its budget. 

So, what do I want?  I want to ask you to--

1. 1.    Do everything in your power to prevent the automatic cuts to the biomedical research budgets of the National Institutes of Health and the Department of Defense.  Such cuts will almost immediately lead to the cessation of ongoing research due to cutoff of research grants, meaning that much of the progress we are on the verge of making in this country to cure such things as diabetes, cancer, MS. ALS, Parkinson’s and others will be wiped out when clinical trials and other research are shut down.  
2. 2.    If stopping sequestration is not possible, then please support any and all efforts to restore critically needed research funding, whether through a Continuing Resolution or a new budget. 
3. 3.    Failing both of those, help me understand how I can become a better advocate for addressing this concern.  We desperately need more investment in biomedical research, both to find cures for the many diseases out there, and to build a strong economic future in the business of providing health care.