Social Action/Tikun Olam Temple Beth Tzedek
Da Hoffmans ... Lisa, Perry & Stevie!
Ari & Eva Footlik and Family
Ray & Dianne Bzibziak
Rosemary & Bob Winkelman
Sandy and Barbara Freed
Eileen (Pam S. Sister)
Jenna and David Rothschild
The Vandevander Family
The O'Connell Family
Judy and Jonathan Epstein
Gabe and Susan Tannenbaum
George Lucky's Diner
Kim From FCB
Allan & Myra Werbow
ed and elinda
Dave & Rose Barus
Family, Friends and Moving Day Teammates,
We are closing in on the date for Moving Day Buffalo. September 7th is rapidly approaching. The planning team has the walk route mapped out and the city permits are in place. This past Sunday we had a dry run of the route to ensure there weren't obstructions that could cause difficulties during the actual event. I won’t kid you, this year the walk is 3-miles in length and took about 1 ½ hours to complete. There will be 2 water stations and a few bathrooms along the way. Now, it could be that I am a year older and the walk is twice as long, but after walking the route Sunday I was shot for the rest of the day. Fortunately, there is a bailout point at about a mile for anyone that needs to take a shortcut. My advice? If you’re tired when you reach the bailout point, use it – I will.
I appreciate all of you that have sent in donations to fund our support group this year. We have made some real impacts this year. The JCC now sports a Theracycle™ which is a bicycle/ exercise machine with motorized pedals which pushes you to move your legs. Use of this machine is free to support group members. My friend Steve uses it regularly and, as a result, has put his walker and cane in storage - a truly miraculous sight.
While this letter is a stand in for my monthly nudge that we can still use your help (we need volunteers as well as funds, no matter how large or small). This is also an appeal to beat the bushes for contacts. Our support group has approximately 600 members and we’ve grown to the point we need a dedicated leader. Volunteers are the hearts blood of our organization and we have people like Linda Mosher who have donated huge amounts of their time to help us be successful. What we need is a committed sponsor – a charitable organization to adopt our local support groups as their cause célèbre.
Here are some of the hard facts: If you or someone you know has Parkinson's disease (PD) you are not alone. In the United States, 50,000-60,000 new cases of PD are diagnosed each year, adding to the one million people who currently have PD. That is more than the combined number of people diagnosed with multiple sclerosis, muscular dystrophy and ALS (Lou Gehrig’s disease) together.
The Center for Disease control rated complications from Parkinson’s disease as the 14th leading cause of death in the United States. Worldwide, it is estimated that four to six million people suffer from the condition. While Parkinson's disease is often generalized as a disease of late middle age with the average age of onset at around 60 years of age, the number of people diagnosed at a younger age is increasing. Cases of "early-onset" Parkinson's disease are more and more frequently reported with patients developing symptoms prior to the age of 30.
There is still no cure for Parkinson’s disease. Instead, therapy is directed at treating the symptoms that are most bothersome to an individual with Parkinson’s disease. For this reason, there is no standard or “best” treatment for Parkinson’s disease that applies to every patient. NPF is currently gathering the data to develop an individualized best approach to patient care. Treatment approaches include medication and surgical therapy. Other treatment approaches include general lifestyle modifications (rest and exercise), physical therapy, support groups, occupational therapy and speech therapy.
Research is great. Everyone wants that magic cure as soon as we can get it. The last medication developed for PD was in the 1960’s when Levodopa was released for general use by PD patients. That was 50 years ago. Some of us will despair and try some certified snake oil from the Congo. Here in the USA a new drug that is developed today will still require 10 to 15 years of testing before it makes it to a pharmacy. Please, just don’t forget those of us who are fighting to function normally as long we can. Sometimes I feel jealous of the dozens of dogs and cats that soft hearted folks try daily to save from their Facebook pages by getting them adopted. It’s a shame that PD doesn’t leave us warm and cuddly like those unfortunate pets. The closest we have is Michael J. Fox, and he already has a good, safe home. Hey, I’ll see you Moving Day. I have a lot of moving still to do.
Miracles appear when the void of total darkness
is pierced by but one single ray of light.
My Personal Web Log
MOVING DAY 2013 - DON'T STAY ON THE PORCH.
I know, you are all chomping at the bit to find out how Buffalo's second Moving Day Walk for Parkinson's turned out. How about GREAT, FANTASTIC, and now we are going to need some help?
And, thankfully, the weather gods blessed the Walk with cool temperatures and clouds, but no rain. Just as the last box was packed, the last banner was stowed, the last trunk closed, and the last car headed home did the skies open up and the rains came down with a vengeance, washing away the chalk "P"s on the sidewalk. All in all, you couldn't buy a better day.
Participation: This year we increased the number of walkers a phenomenal 20%, bring us to over 600 walkers. We also had nearly 90 volunteers who helped set up, directed traffic, served food and aided in the logistics of the event. The Movement Pavilion had many wonderful exercise and stretching demonstrations, all from local talent that kept the crowd rocking with activities by:
Exercise with Pam Rost
Yoga with Carol Craig
Exercise with Jason Agnello, LA Fitness
Tai Chi with Vivian
Music by Shattered Glass
Children's Activities by Blue Cross Blue Shield
"Thank you" posters created by those unable to walk themselves.
The current count shows that there were 40 registered teams made up of roughly 450 walkers and an additional 150 or so independent walkers, brought the total up to 600 walkers who brought in just over $58,000. Plus, we counted another 87 people who showed up as volunteers.
Outreach: Amazingly, the week after the Walk, twenty brand new Parkinson members showed up at the North Town Support Group meeting with their caregivers. This brings our membership to about 1,000 members! Getting Parkies to step across that threshold for their first Support Group meeting is almost as hard psychologically as it could be physically. There are few who are not initially nervous about interacting with people further down the Parkinson path. Once you get across that threshold, though, you realize that the more you help others, the better you feel about yourself and as a bonus you get to do something in the fight against PD which I found much better than curling up in a corner with the covers over my head. Who knows when the breakthrough cure is going to happen? And, even if it doesn't happen in my time, the positive feelings I get from helping someone else is worth many, many positive Parkie points. Why else? At the meetings we learn things that might help make our lives a bit more manageable. It may even save your life.
Monetary: This year we wound up a bit shy of last year in funds raising despite the valiant efforts of teams P34 Schaefer, UBNS and the Wolfpack and many smaller teams. Last year NPFWNY (Buffalo) was the new kid in on the PD block and, as anything new you get a bit of a boost just for it being your first time. After that, some of the newness wears off and you fall into white noise of all the rest of the charities requesting donations. A number of our sponsors from last year were hit repeatedly for donations to various other causes this year. There did not seem to be a weekend that went by that there wasn't a bike race or walk or swim or some other kind of event to raise money for the various causes. And let's face it, this year there did not seem to be as much to go around. So last year we hit one out of the park and raised $68,000. This year without the "NEW" sticker we came in $10,000 less. Still, $58,000 is nothing to turn your nose up at. Thank you to EVERONE for your generosity. We literally could not do this without you.
Too much success? 1,000 members is a lot of people. We will need to review our venues of where we hold the Valentines Dance, the Parkinson Family picnic and even the annual Freeze. We will need to determine whether our support groups are in the right places and think about alternate locations if they are not. Are the exercise and Tai Chi classes sized and located in tune with where our membership lives and would it make sense to combine some in a single larger facility? And, as our group gets bigger, there are increases in costs as well. One thing we know is that running groups at these levels cannot be done by a part time volunteer, no matter how passionate. It is time to start looking for and hiring an Executive Director. This person will need to help us organize our events and interface with some larger donors and line up funds to help pay for his or her salary. We now have to decide if we want to run with the big dogs or stay on the porch.
This year I made a tactical error. I had decided that as lead for the logistic group I would help with the setup and walk to the short cut, rest in between and help with the teardown. When the ribbon was cut and the crowd left Coca Cola field for the Marina I was about half way back through the throng. When I got to the cut off, I "forgot" to take it. Having missed the turn, my ego kicked in and I kept on going. As things progressed, I fell further and further behind. By the time I got back I was in last place, dead tired and in more than a little pain. By Sunday morning I couldn't get out of bed. I learned a very serious lesson that day. PD allows me only so much energy per day, past that I am running on empty. Being brave and pushing the extra mile is one thing, over-doing it is a dumb idea. Next year I will be taking the cut off so that I can help with the teardown. I learned that there will be things I will not be able to do as my time with PD progresses. I will need to choose what I want to accomplish and what I am able to accomplish. Those that know me know that I am not giving up, I'm merely choosing my battles. Next year I'll be needing a little more time on the porch.