While I was at the 2005 P.A.N. {Parkinson’s Action Network}, I was asked to write my view of the event. The following represents that view. Since this is not a data report, I’ll stay away from statistical, logistical, & factual data, while leaning towards the whimsical, what-“IF,” & maybe even the mystical. I’ll stay away from names, from fear of forgetting, offending, &/or misspelling, except where absolutely necessary. My goal is to share what this event meant to me & provoke thought. However, I do intend this to be an accurate account of what happened & a speculation of what it meant, & means to me, in the past, present, & future.
The P.A.N. Forum lasted from 02-{06-07-08}-2005, but for me, it began about 3:30pm, on Saturday, Feb 5th, when Nanny {my wife Patsy} & I entered the Marriott Hotel. I heard yells & turned to see an arm waving assembly of Parkies. Registration would have to wait, as unused hugs & handshakes were begging to be manifested. This extended family would prove to be a sample of the over 300 Parkies, waiting to relish over old relationships, &/or start new ones. Laughter, tears, warm smiles, & pulled heartstrings, flourished in abundance. The entire time I was in DC, I felt like a bee buzzing from one batch of flowers to another, extracting nectar, necessary to my survival.
Then came the meetings. 8am-5pm, including listening while eating my box lunch. It was a full schedule, & I’m sure the information was needed, & retained, by someone. Remember, this is MY view, & Toad’s daily schedule has a nap after eating, while extending horizontal. A 2hr siesta or a break from 12pm-2pm, would have increased my comprehension skills. This is an observation, not a complaint. I was there on someone else’s nickel {a scholarship} & I honestly tried to listen. It was refreshing to see scientist, looking for my cure of PD, showing such excitement & enthusiasm.
The second day started with me being leery & wary of having my pea brain overloaded. However, the session on the basics of what to do, & what was expected, while on Capital Hill, was informative, interesting, & very, very, useful. We divided into groups I’ll refer to as A.T. {Action Teams}. Our A.T. consisted of all Arkansan’s including Nanny {my wife & care partner}, Pam Kell {another Arkie Parkie}, myself, & Ben Kirby, our P.A.N. liaison, who kept us motivated, on schedule, & out of trouble. Our A.T. fit, meshed, & bonded from the get go, to the let go. In short, once the A.T. formed, the business aspect of my P.A.N. event started & continued to be fun.
Let me take a moment to say that any efforts of our A.T. & it’s possible success were directly responsible by two very special people. Pam Kell is articulate, intelligent, & exuberant. She kept the flow of conversation during the interviews smooth & on topic. Nanny not only talked of the effect of PD on the care partner, she WAS/IS my care partner. I know she suffered quietly while caring for my needs, pushing me around Capital Hill in a wheel chair, & then fighting the airports. Both women were indispensable to our cause & to calming my apprehensions.
We had scheduled appointments with Joy McGlaun, Legislative Assistant to Representative Vic Snyder, then Tate Heuer, Senior Legislative Assistant to Senator Mark Pryor, as well as Elizabeth MacDonald, Legislative Assistant to Senator Blanche Lincoln, & finally Kathee Facchiano, Legislative Assistant to Congresman John Boozman. However, the unexpected highlights occurred when we were joined by Senator Lincoln, who shared a personal story with us .Then later by Congressman Boozman, who had pictures taken with us & introduced us to his lovely & charming wife. We met, stated our case, listened, & left. Did we win? I don’t know. Where we winners? Absolutely! Only the future will tell if we made a difference to them. I would have never believed the warmth & sincerity of everyone on Capital Hill, had I not experienced it 1st hand.
I previously believed that results in government were only achieved by back scratching & palm greasing, & to a degree, I still do. But what if, by the telling of our story, we reminded a politician of someone. Maybe a cherished friend, care partner, brother, sister, aunt, or uncle, etc, that has suffered from PD. And what if, while on the fence of decision, the thought of our visit stirred the memories of others, & just maybe that Senator or Congressman will climb down off that fence on the side of PD research? And what if that person influenced others?
While on Capital Hill, in the greatest & most powerful country in the world, I personally saw hundreds, maybe thousands of people, doing the same thing I was doing. I guess I’m naive enough to believe it must work for some or no one would be there, & if that’s true, why not for me. What if, I would have made a difference, but I hadn’t of gone? We all appeal more to some than others. What if, the story someone didn’t tell, left a decision maker coming down the wrong side of the fence, & my cure, my kids cure, or my grand kids cure, was postponed? I KNOW I’ll never forget the Senator & Congressman, who made time to hear my plea. I believe that they’ll not forget me too soon, either. Maybe, the memory will be in time for voting on the very issue that holds my fate.
I do have suggestions, if anyone reads this from P.A.N. First, extend the Forum one day to “meet & greet.” Two, include chat room ID names on badges, “IE”, Jimmie “Toad” Turner. Three, give each person a copy of the registry, so we can look for & find old friends, while we’re making new ones.
At any rate, just as the days were loaded with meetings, the nights were loaded with greetings. It was fantastic! Much like a huge family re-union. The finding of a long lost relative or just getting to put a face on a chat room ID name was wonderful.
In closing, I must thank Chy Casavant & Peggy Willocks, for without their loving, nudging, & nagging, I would have missed out on an experience of a lifetime. I want to thank all on Capital Hill, including Ben Kirby, for exemplifying Democracy to our A.T.
Finally, I want to thank those that made the scholarships available. Last but not least, I thank P.A.N. for giving me hope & giving legs to my prayers.
Jimmie “Toad” Turner 02-10-05