Parkinson’s Cure Research Funding, Inc. (“PCRF”) was founded in November, 2010 as a non-profit corporation dedicated to raising money for Parkinson’s disease research and patient support. The corporation’s main fundraising event is an annual golf tournament held in April at the Lake Ashton community in Winter Haven and Lake Wales, Florida.
Proceeds from the event have been donated to the Michael J Fox Foundation. Prior to forming PCRF the first golf tournament was held in April 2009 and we raised $12,000. The second tournament in April 2010 raised $27,000. Our next tournament will be held on April 7, 2012. At each of the first two golf outings, 215 players filled the two 18 hole golf courses at Lake Ashton.
PCRF was founded by Bob and Cecily Harmon. Bob was diagnosed with Parkinson’s in 2006 and is still very active playing golf and working to help find a cure for PD through fund-raising. He has recently been named to the Southwest Florida Regional Council of the Michael J Fox Foundation. Their mission is to drive ideas about local engagement opportunities to increase Parkinson’s Disease awareness, enhance education efforts and connect with untapped resources to develop the overall expansion of the Fox Foundation in Florida.
The Harmon’s facilitate the Lake Ashton Parkinson’s Outreach Group which supports local Parkinson’s patients and their care partners. The group meets on the first Friday of every month at 10am at Lake Ashton and is open to the Parkinson’s community in the general public.
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In a little over a month, I will celebrate the tenth anniversary of my diagnosis of Parkinson’s. Ten years ago, I was working and Cecily was not, and both of our girls were still in college. I was healthy or at least I thought I was, and I was fully engaged in the pursuit of the American dream. Then the doctor’s visit where I heard “You have Parkinson’s disease “which shifted my reality. With Cecily’s help, I was able to adjust to this new chapter of my life.
Parkinson’s has given me an endless task of pills and physical challenges. I am not complaining. I am fortunate that the disease is progressing slowly, but we can’t stop the march of time.
Parkinson’s has also given us a new community that participates in our journey. This community consists of a number of entities. First and foremost of which is a stronger family unit. The Harmon “Wonder Women” have shared the good, bad and the ugly. They are the foundation of our journey with PD.
Second is our friends, new or old. Without them, we are an empty shell. Thirdly is our TeamFox family. They make me laugh and they make me cry with their extraordinary feats and accomplishments. When we meet old Foxes or new ones, there is an instant bonding and understanding. The PD Warriors, whether part of TeamFox or not, make up a strong brotherhood of support and love that makes this journey much easier. Their focus is not on how many times they fall, but how many times they get back up.
So, my time with Parkinson’s has passed quickly. We have not found the cure, yet. We are moving forward. A number of promising research projects are in trials that may relieve symptoms and be almost as good as a cure. But that is not enough. We have lost too many of our fellow warriors, with the passage of time.
Recently, our family joined TeamFox in a 10K at the Disney Marathon weekend. When I crossed the finish line, I reflected on friends who have passed away with PD this year. I realized we are not doing enough. TIME IS OUR ENEMY!
THE TIME IS NOW TO RE-DEDICATE MYSELF TO FINDING A CURE. PLEASE JOIN ME. LET’S END THIS DISEASE.
The world is so uncertain. We live every day, usually hoping for things to come or not come. We often spend our time worrying about things we cannot control. At worst, Parkinson’s can be a dark stranger taking little things away from us every day, or at best, a pain in the ass which we have to cope with. A disease that is incurable leaves few options of what you can do. Our family has chosen to try and do all we can do.
We know that through exercise, I can lessen my symptoms, and research tells us that it can also slow the progression of the disease. So, this weekend I had the privilege to work the LSVT (Lee Silverman Voice Training). BIG people in a certification training session for Physical Therapists and Occupation Therapists.
This program is specifically designed to address movement symptoms of PD. There we 80 participants who were learning about this method, hoping to become certified. I was asked to be a patient in a typical therapy session, so the trainees could observe a session with a live patient. A gross understatement would be that I had fun. Imagine me having a captive audience to show off to, while being fully “on meds.”
By the end of 30 minutes I was in a full sweat and ready to go home. The trainer had taken me out of my comfort zone as he coached me to perform “bigger.” Cecily and I left and went home to relax and prepare for the next day.
The second day was an open presentation of the LSTV product to the local PD community. I had distributed the flyer to members of our support group and five of us were there. The program notice included a presentation on the program followed by a session where the newly trained therapists could work with actual patients, which I thought was a great idea. I was pleasantly surprised when all our group volunteered to be training patients. Expecting to be able to closely watch how our group did, I found my trainers (8 of them) enthusiastic about having a shot at Bob. As each one had their chance to show me an exercise, their enthusiasm drove me to a “bring it “attitude, which led to a very high-level session. All the time all of my trainers focused on my performance and condition in a controlled environment. We even worked on my golf swing. After a few practices I thought I was Freddy Couples (on crack). Only after seeing the video did I realize that the visuals did not match my mind’s eye. (I had two spotters.)
At the end of the one-hour session, we duplicated performance tests and I found that I had achieved a 50% improvement in flexibility and speed. Only then did I have an opportunity to observe other members of our group. Regardless of symptoms, every test subject was showing significantly improved movement. It was truly a moving and exciting moment for all of us, including the trainers.
Patients came away with an enormous sense of empowerment. There was something we could do. It would not be easy, but we had choices. It was a BIG moment.
So regardless of what you choose to help you push back the daily mudslide of Parkinson’s, you have choices. Choose now, be a warrior.
Last week Cecily and I went on vacation for 10 days with close friends in Coeur d’Alene, Idaho. The first few days were spent in Walla Walla wine country, which was territory we were very comfortable with. I have been collecting wine for twenty five years and despite a loss of smell thanks to Parkinson’s, I was at ease with wine tasting. Upon our return, we spent a day on the lake. Again another comfort zone. Grew up around boats.
The next day we were planning an ATV trip up one of the many trails nearby. After a comprehensive lesson on how to drive, turn, and most important how to stop the devil’s spawn, I was deemed thoroughly competent to operate the four wheeler. What was still an unknown for me is whether I was physically ready for this adventure, a fear I quietly kept to myself, under withering questioning by my back seater.
The next morning bright and early, we loaded up the ATVs and went to the starting part of this journey. At the end of road to nowhere, we jumped on our trusty metal stallion. After the first few seconds, before the stream crossing, it was apparent to me that my small muscle control was somewhat lacking. I knew this by the Holy s%%^ from Cecily as we jumped and lurched forward. Since neither of us had ever been on an ATV, I was able to convince Cecily that everything was fine (discussed life insurance policies).
To set the stage for those who have neither experienced this type of excursion, the trail was 8 feet wide (or less), the vehicle as 4 feet wide, periodic washouts were common, flat (side to side) was non-existent, direction was definitely up, and the drop-off on downhill side of the trail was anywhere from two feet to two thousand feet.
As a point of reference of what I saw on the two hour trip to the top, every time Cecily said look at that I responded in an expletive “No I’m busy, look at that rock.” Have I mentioned the cramps? Right thumb on the throttle control, right leg, left leg……… Short version my hair didn’t cramp. We were on the last big run to the top when I had to stop. Hip cramp (who’d a thunk). Rule #1 don’t stop on a steep incline. I said to Cecily, “I don’t think I can make it.” She said “What do we do?” Having no other choice, I said “We’ve Got This.” I don’t know if her hug was in loving agreement with me, or her just hanging on, I hit the throttle and within a few minutes we were at the summit. There was no gas in our tanks, although the beast was half full and wanted to continue. Dick, our fearless leader was still slowly getting off his machine, but he quickly found two beers in the cooler to celebrate.
As we stood there, a calm sense of accomplishment came over me, for about two sips. He suggested lunch at a lake about “10 minutes downhill” and off we went. It was easy compared to “up.” All I had to do was hold the brakes fully locked. Shortly (a little more than 10 minutes) we arrived at the lake which was beautiful. We took out our lunch and the remainder of the one precious beer. That is when we heard the sound of a helicopter. Looking up we saw a water supply helicopter which was actively being used to fight the forest fires plaguing the northwest. To our surprise it was only a few minutes after it took water from the lake that it returned for its next load. CLICK. That is the sound of our collective brains. There was a fire nearby. After less than a minute, we assessed our situation and realized it was a small hot spot with five (number of trucks parked at the lake) firefighters trying to contain the fire’s spread with the support of the helicopter. No big discussion here. We jumped on the devil’s spawn and hightailed it down the mountain gravel road to the ever present sound of the helicopter and chain saws.
I lead the way as fast as I could.
So why this post? I have reflected on a great adventure. All of the details fade behind that one moment before the summit when “I was done.” I could have easily gotten off the ATV and quit, but I didn’t.
When I thought of our journey with Parkinson’s, I remembered all the times I wanted to give up, and it wasn’t an option in my mind. I remembered Matt Mitchell telling me “You are not alone,” and John Ryan and many others (including all of my family) screaming to others, meeting their challenges “YOU’VE GOT THIS”. The truth is we did have it. We knew we could persevere, just like we do every day.
“Time waits for no man,” “Time marches on,” “Live for Today” are sayings that we hear from time to time. For those who know me, I don’t worry about the future very much, or so I say. The truth is I am constantly reminded that life and time are precious. But I refuse to spend time worrying about tomorrow to the extent I lose what I do have, today.
Many years ago I was talked into forming a Parkinson’s support group. I was afraid to do that because I didn’t want to “See the Future” as I met patients who were farther along the Parkinson’s journey than I was. But I was surprised by what I got in return for reaching out to those in need.
It was much more than I ever expected, a sense of community that comes immediately upon meeting a fellow journeyer. I found as we talked about symptoms and challenges, there was mutual understanding and a calming sense that “We were not alone.” I learned very quickly that time was not the sole factor defining the daily small losses of physical abilities. So, my approach was to take the best of each day and build on it and to cram as much into each day as I could.
I spend a lot of time raising money to find the cure. As soon as one event is finished, we start the next. We will find the cure, I have no doubt, but “Time marches on.”
This last month has challenged my beliefs and optimism. During the last 30 days, four members of our support group have passed away, in addition to the father of some people we just met at the Florida Summit of the Tour de Fox. This loss is disheartening, and freaky. Continue reading Grief a motivation to stay the course for a cure→
In 2006, at the age of 57, I was diagnosed with Parkinson’s disease, a chronic, progressive, neurological
disease. That year I retired to enjoy the fruits of over 40 years of work. Like all people who receive life-changing news, I was devastated, but I was fortunate that I had a wise wife. Cecily reacted to the news
in an unexpected way. Her response was “Thank God it is not something that is going to kill you in 90 days. We can deal with this.”
Retirement offered many opportunities to do things you really never had done before. One of those was golf. I had played golf on a very sporadic basis during my life, but not in a way to have a golf swing.
Over the years my game has improved, but I knew that I would only be a mid-handicap player due to rigidity, a major symptom of Parkinson’s, and the hourly fluctuation of symptoms caused by the short efficacy of the medications. Despite the challenges, golf along with other exercise seemed to slow the progression of the disease.
It is every golfer’s dream to make a hole in one. So on May 6, 2013, I was ecstatic to achieve that dream. Of course I celebrated and then went back to playing golf. I was different then before because now I knew I could make a hole in one on any par 3, because I had done it. Being an optimist didn’t hurt either.
On September 14, 2014, I was fortunate to make my second hole in one. Again it was a time for celebration. Both holes in one were made on my home two courses at Lake Ashton, but they were on separate courses.
Eight days later on September 22nd we reached the first par 3, my golfing partners were giving me a hard time about since I had gotten a hole in one the week before, why don’t you just do it again. Laughing I stepped up to the ball and hit it. To my surprise it was a good shot, and to our surprise it went in the hole.
Two holes in one in eight days.
The odds of that happening are astronomical, even for a player who doesn’t have Parkinson’s.
I reflected on the accomplishment and tried to put in context. I have spent the last eight years living with Parkinson’s and preaching to all that will listen to keep active, positive and fight the fight. You never know what you can accomplish when you try.
Maybe next Monday they will find a cure for Parkinson’s.
We started off the month with the whole family gathering for the 5th Annual Golf for the Cure. For those who remember last year where everyone told me “You did to much,” I made a pledge that I would get more help this year. Well, I lived up to that pledge and was fully recovered two days after the tournament. Thanks to all who helped me carry the load especially my family.
The event once again showed the generosity of the Lake Ashton community. We raised over $47,000 this year, which brings our five year total to over $200,000 (including matches through the Michael J Fox Foundation). The event also had a few surprises for Bob (I hate surprises). Since the event coincided with the MJFF MVP dinner, which we were unable to attend, and members of the foundation were unable to come to our event. Hence the surprise, we received a two-part video with Stephanie Paddock from the foundation and Michael J Fox with a personal message for our community and my family. Due to a production glitch, Emily’s name was left out. When the family told me of the problem the night before two things happened. The foundation went out of their way to send a letter to Em and a picture from Michael thanking her during MVP. But the best thing that happened was Emily’s immediate response. She said: “Dad this isn’t about me, it’s about finding a cure.” Boy, does she get it or what.
So, thank you again to all those who helped us, all of the donors, and to the Lake Ashton community, you are part of the effort to Find the Cure. Thank you Emily for reminding me of the lessons we have previously learned.
I know that apathy is typical in PD patients. It has always driven me crazy when I see my fellow journiers (I made this word up, but it works for me) not being aggressive or active in pushing the beast back. Last week, I told Cecily that I was “losing traction” on our sponsor relationships for our fifth golf tournament. She reminded me of the great year we had in 2013 and we don’t always have to be better. It sounded un- American. Don’t we always strive to do better?
So I sat on my ass for a day and reflected. I came away conflicted but directed. From a fundraising standpoint, I am comfortable in knowing the generosity universe in a small community has a limit. Re-energized I caught up on my tournament timeline. Some pluses, some minuses … but every contribution regardless of historical numbers means so much. So to all of us on the money train of charitable efforts, DO YOUR BEST AND FORGET THE BUDGET AND HAVE FUN.
From the health side, (apathy or even depression) not every day is “fantastic,” but is a day to make the best out of. Actually every day should be fantastic, because we are blessed to have it and there are not promises for tomorrow. Do we feel good everyday? No. But it is like golf. It is not how good your best shot is, it is how much good you can do with a bad shot.
So if you find me sitting on my ass and apathetic, kick me in the ass. Just don’ t kick my foot because it may be already on the way to my own ass. For anyone out there who loses their drive to take the best out of what we have, take heart. You are not alone. Together we will move forward.
TWO SHOES ON AGAIN, as soon as I can get it out of my ass.
Almost two years ago, I met a man through the Michael J Fox Foundation mentor program named John Ryan. I was immediately drawn to him because of his outgoing personality. I don’t know if John has ever met a stranger. Needless to say we became friends, and now call each other “my brother from another mother.” John was running his first half marathon right after we first met which was a challenge for him. Somewhere along the way John began talking about running in the NYC marathon. I told him if he crazy enough to do it I would be there to support him.
Well, he was crazy enough and last weekend I found myself in NYC along with Cecily and Kate (Emily was not able to join us because of work). My promise to John not only was being fulfilled, but Kate had pitched an offer to the Foundation to take pictures of the event, which included bringing Jason Plotkin, an Emmy award winning photo journalist, and his wife Melissa. So instead of just being there to see John, we were included in the Fox Foundation weekend race plans.
This weekend rates number three in my life’s best moments, only after marrying my wife, Cecily, and the birth of our twins. Sorry hole-in-one you weren’t even close. It wasn’t because we were in close proximity to Michael J Fox, his family, and members of the cast from his new television show, but it is because we were part of a large community of people with a common cause — the cure for Parkinson’s disease. Within this group there is an intense bonding process that goes well beyond normal friendships. There is no single hero, but hundreds of friends supporting the runners and thousands more who weren’t there physically, but were in spirit. Sure, the runners were running for themselves, but many of them had the name of the person they were running for in their pocket or on their shirts. What they may not have realized prior to the race was that they were running for all of us in the Parkinson’s community.
At our cheering section, we spent the day cheering for those we knew and those we didn’t know. We laughed, yelled and even shed a tear or two (buckets). There were moments of understanding that we can do more, and there were moments of pride in our friends who were running, but the realization of the power of the relationships we had and were building was overwhelming. This experience that I had was happening on every block of the race. Not for Parkinson’s but for many different reasons. On one side trip (to find a restroom), I even heard a spectator yell “go runners.”
There were two moments in the day that stand out in my mind, as really special. The first was when John Ryan, Tim Ryan, Sue Bilotta, Gwen Schroeder, and AJ Capuzzi (a neighbor of John’s who was not a runner, but offered to join him) reached our cheering section. The police had done a great job of keeping spectators off the street, until then. Grown men cried and hugged (not me of course- any pictures to the contrary are photo shopped), beautiful sweaty women warriors were embraced and high-fived, husbands were congratulated by their family (eventually). All of it was captured on tape until the camera woman (Kate) was drawn into the celebration. Here’s the video, but as a warning, bring a Kleenex.
The second moment was when Mike Kelly, a new friend of mine, reached us. He had started later and it was getting cold (actually colder) and dark. He was freezing cold and tired, but he was determined. Before he reached the surging crowd, Michael J Fox met him with a hug and joined him to finish the race. As they took off up the street both Mikes broke into a run. Yep, a second bucket of tears. When I saw Mike Kelly after the race, at the post race party, his hands were so cold that I gave him my hand warmers (which were harder than if I had to give up my wife). This moment was not about the fact that Michael J Fox joined him, it was about his determination to finish and that people were there to support him, whether they were famous or not.
I know this feel good feeling will diminish over time, but not by much. It will lift me up when I am down. It will remind me if I think I can, then I can (think/able). I hope it will do the same for you. I can always go to the website and watch for a couple of minutes and be right back there.
Oh I forgot to mention John and Mike have Parkinson’s.
Last but not least, the big reveal- I will NOT be running in next year’s race- these guys and girls are crazy!
Over the last few days, the news media has run a number of stories about peanut butter, smell and Alzheimer’s. Apparently a graduate student at the University of Florida conducted a pilot study, albeit small, to test Alzheimer patients’ and control volunteers’ ability to smell peanut butter. The results showed that the Alzheimer’s patients had a significantly decreased ability to smell in their left nostril, as compared with their right nostril, and compared to controls. This was a control blind study, results of which have been published in the Journal of the Neurological Sciences.
Made the connection yet. As you know, a large percentage of Parkinson’s patients have lost their sense of smell. Many of them prior to diagnosis. Actually, there is a smell test trial spearheaded by the Michael J Fox Foundation to determine whether a loss of smell may be a pre symptom cohort in PD and a smell may be helpful in early diagnosis for PD. By the way, have you signed up for this free pass to do good? It’s only two questions and easy to complete!
Coincidentally, that the two leading neurodegenerative diseases may have the same pre-symptom indicator. Now I am not a scientist, but I was not surprised by the finding. In the readings that I do to keep my finger on the pulse of research, one thing seems to be a common topic. Misfolded proteins. Alpha-synuclein protein in Parkinson’s and tau protein, among many, in Alzheimer’s.
Now this seems exciting to me. Why? My simple brain says “Unite”, “Share”. It is simple. All we have to do is share data between the scientists studying these two diseases. The model is there in the Fox Foundation. This is not about big pharma making money or some PhD getting famous or rich, it about finding a cure for both of these diseases, now.
We have taken a break from fundraising for a brief period, but that doesn’t mean we are just sitting around. On Sept. 26, Michael J Fox is returning to television since leaving Spin City in 2000, with a full time comedy show on NBC. The show is called the Michael J Fox show with the main character “Mike” as a retired newsman who has Parkinson’s (what a natural fit). The Fox Foundation asked us and a lot of other supporters to host a premiere party to commemorate the beginning of the show.
So Cecily and I are hosting a party for up to 80 people to watch the show. Normally, I would have my fundraising hat on, but for this event we are focusing on Michael’s return to the profession he loves. In a recent interview, he disclosed that his doctor told him he would have 10 good years (sounds familiar) to continue acting. That was 20 years ago. The tagline for all of the premiere parties is think/able. The foundations party package that we received has the following quote “Michaels’ return to TV is an important reminder that when you focus on what’s possible and think/able, you can achieve greatness.” So for our event we are going to focus on think/able and the power of optimism.
For those who know me, you already know an event with optimism and positive thinking is as simple as Michael playing a character with Parkinson’s. If you focus on the positive, you are freed up from the baggage that negativity brings. We will have a fun night laughing and learning/teaching with our friends. I have seen some of the trailers about the show and it is very funny. I know that I, as well as the other hosts, will probably be laughing the most because we will see ourselves in some of the scenes.
So join all of us on Sept. 26 and watch the premiere of the Michael J Fox show. On Twitter, use the #ThinkAble to share what you can achieve when you focus on what’s possible.
Remember every day can be FANTASTIC if you truly believe it can be , and you make it that way.