Tag Archives: parkinsons

10 years in, reflections and re-dedication

dadIn 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.

TWO SHOES ON AGAIN (not running kicks)

Lee Silverman Voice Training gives patients a sense of empowerment


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.

TWO BIG SHOES ON AGAIN

Let me tell you a little story about my Mom

1519599_698695746830758_1959666373_oA little while ago, The Michael J. Fox Foundation asked me to interview my Mom for a newsletter about the PPMI study that she’s involved in.

They wanted the personal touch of a mother and daughter talking about why my mother is so awesome and involved. (OK, so maybe the author is biased. Just a tad.)

In the end, I wrote a novel, so only a small part appeared in the newsletter. See the whole piece below.

Fall 2014 Newsletter
Continue reading Let me tell you a little story about my Mom

Two holes in one? Is a Parkinson’s cure next?

Hole in one No. 2
Hole in one No. 2

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.

Hole in one No. 3
Hole in one No. 3

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.

‘Dad, this isn’t about me, it’s about finding the cure’

What a month April was.

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.

At the end of the month the local newspaper ran an article about our efforts in the community. It is an honor to be chosen for the piece, and I am somewhat embarrassed by the attention. The upside is our journey was exposed to almost 70,000 readers, and it was Parkinson’s Awareness month after all. As I was reflecting on the month and being “out there,” I thought of Emily’s comment and everything fell into place.

This isn’t about me. It’s about finding the cure

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.

TWO SHOES ON AGAIN

How much did Golf for the Cure bring in …

Did you see who Team Fox featured on Inspiration Monday?
Did you see who Team Fox featured on Inspiration Monday?

I just wanted to share this photo of Dad with you all and tell you some big news.

So there are still some checks and dollars to be counted, but the 5th Annual Golf for the Cure for Parkinson’s Disease has raised MORE THAN $45,000 for the Michael J. Fox Foundation.

SAY WHAT?

That’s right. Thanks to your support, our sponsors and the Lake Ashton community, in five years, you’ve helped us raise more than $200,000 for the foundation to help find a cure.

I interviewed a mother today, who was diagnosed less than a year ago with PD. She was talking to me about why we do this. Why we fundraise. Why we participate in clinical trials. And she said:

“Maybe more moms at the age of 42 won’t have to look at their kids and say this is going to be a long road, but we’re going to just fine.”

Thank you, thank you, thank you. For being a part of this goal and our journey. We seriously could not do it without each and every single one of you.

Where have we been?

I know, I know. No one likes a blog post that starts off … Sorry for being MIA lately, but. And here it is. There are plenty of excuses of where I’ve been, what the family has been up to, etc. But what it comes down for me personally, is that work has been insane and I’ve been missing out on my PD family.

Let me catch you up with what’s been happening.

Meet the Vanek family: Emily, Sherri, Ben and Michael
Meet the Vanek family: Emily, Sherri, Ben and Michael

Recently, I had the honor of interview the Vanek family for the Michael J Fox Foundation’s blog. The dad, Michael, has PD and is participating in every trial he can. It was seriously one of my favorite, if not my absolute favorite story I’ve written for the blog. Why? Honestly, I’m not sure. But I think it has to do with the innocence of the children in the family.

Little Ben, 6, goes to bed every night praying that “daddy’s Parkinson’s” go away. He doesn’t know what that means really. Nor does he understand that his dad is playing an active role in the cure.
Continue reading Where have we been?

Spread the word! It’s almost time

We’re a month away from the 5th Annual Golf For the Cure for Parkinson’s Disease! 

Check out the press release I typed up for local media, and head over to Dad’s Team Fox page if you’d like to donate. 

It could have been easy in 2006 for Winter Haven resident Bob Harmon to let a diagnosis of Parkinson’s disease consume him. Instead, it did not only the opposite for him, but for his family and many in the Lake Ashton community.

 

It started as a tremor in his pinky finger in 2004,  that turned into trouble eating cereal without spilling. Then his gait changed. After seeing a neurologist, it was confirmed, Parkinson’s. On his way back to work, he called his wife, Cecily, who said “Thank God it’s not something that will kill you in 90 days.” Not only has it not killed him, but it’s inspired him to mentor others, start a support group and raise more than $150,000 so far for the Michael J Fox Foundation.

 

In doing so, Harmon has spread the word of the disease known by many to affect old the elderly and some famous people Muhammad Ali and Michael J Fox. In 2009, Harmon held the first Golf for the Cure for Parkinson’s Disease in the Lake Ashton community. More than 200 golfers mostly from inside the community packed the two golf courses for a day of golf followed by a luncheon and auction. It became a packed, annual event and in its fourth year, the community helped Harmon raise more than $50,000 for the cure. In 2013, the tournament was in the top 20 fundraisers for Team Fox, the grassroots fundraising arm of the Michael J Fox Foundation.

 

This year’s tournament — the 5th Annual Golf For The Cure For Parkinson’s Disease — will be held Saturday, April 5 at 8:30 a.m.

 

Along with his fundraising efforts, Harmon created and facilitates the Lake Ashton Outreach/Support Group and Parkinson’s Cure Research Funding, his own nonprofit. The support group, which he runs with the help of his wife, is open to the general public to provide support to Parkinson’s patients and their care partners. The group meets on the first Friday of the month. Bob and Cecily are also involved in clinical trials, which they found through Fox Trial Finder, the Michael J Fox Foundation’s online clinical trials matching tool. Their twin daughters, Emily and Kate, are also signed up. Emily and Kate also raise money for other Parkinson’s efforts, and Kate writes for the Michael J Fox Foundation.

 

This year’s tournament will prove to again be a labor of love and hope as the Harmons, the Lake Ashton community and their friends come together to help raise money as they joke on the course. Bob has said he’s not sure a cure will come in his lifetime, but his efforts and those of the Winter Haven-Lakeland community will be a part of bringing that cure to those just like him.