The modern world is so interconnected, and Jay and I often find ourselves in surprising, unexpected situations where we realize we have multiple connections with the people around us. Actually, it happens almost every day. Here’s a connection story that developed a few weeks ago, at the annual meeting of the Princeton Tennis Club, held at the Mountainside Bakery & Cafe in Princeton, Massachusetts. When it was time for the meeting to start, we coincidentally sat next to Brendan and Erin Toohey. Jay occasionally plays doubles tennis with Brendan, so it was a comfortable seating arrangement.
Somehow we got around to discussing that Brendan was going to run in the London Marathon in April. I now remember that the conversation started because Brendan said he frequently runs by our house, and that our dogs run alongside him (barking obnoxiously, while keeping inside the limits of their invisible fence). Although both Jay and I could stand to get more exercise, either of us training to run a marathon, or that we all love dogs, was NOT our point of connection with the Tooheys.
What was a connection, however, was Parkinson’s disease. Brendan is training for the London Marathon, where he will run 26.2 miles for Team Fox, and he will personally raise at least $7,500 to help defeat Parkinson’s disease, in honor of his Father-In-Law, Bill Lentz. Team Fox is the fundraising arm of The Michael J. Fox Foundation. Team Fox members have raised over $100 MILLION for Parkinson’s research since 2006.
This is the disease that, in 2021, took the life of my stepfather, Ray Page, who along with my mother, lived with us in an accessory apartment in our home in Princeton. Before that, over the course of many years, Parkinson’s robbed my stepfather of his memory, his ability to enjoy life, and his dignity. It’s a terrible affliction, you can’t even die from it, and there’s no known cure.
Because of this Parkinson’s connection, we asked if we could help publicize Brendan’s run, to make more people aware of, and contribute to, the Team Fox fundraising efforts. Brendan and Erin agreed to meet with us and discuss the backstory of why (and how) Brendan is doing this. Besides the pleasure of getting to know Brendan and Erin better, we found it to be an interesting, inspirational and very important story.
Brendan has been a runner for much of his life, including at the Thomas Prince School, where he ran cross country. He’s also a tennis player. Jay plays doubles tennis with Brendan–if there’s ever a lob, or a really deep ball someone has to get to, Jay doesn’t even consider trying to reach it. Brendan is incredibly fast, and will run back and get it. All Jay has to do is be ready when he hits it back.
However, running the London Marathon is a whole lot different than a race at Thomas Prince, no matter how fast you were, or playing tennis at the Pine Hill Club. The London Marathon is one of the Big Six marathons in the world: Tokyo, Boston, London, Berlin, Chicago and New York.
The London Marathon runs through the oldest parts of London, along the Thames River, where the city was founded in 43AD by the invading Romans, as ‘Londinium’. The London Marathon is April 23, 2023, which is shortly after the Boston Marathon. A few weeks ago, as part of his training, Brendan ran the Eastern States 20 Miler, from Kittery, Maine to Salisbury, Massachusetts.
Erin’s father, Bill Lentz, is a former International Ironman competitor and triathlete. To put this in perspective, the Ironman Triathlon is considerably more difficult than the Olympic Triathlon. The Olympic Triathlon consists of a 1.5 km swim (.9 miles), a 40 km bicycle ride (24.85 miles) and a 10 km run (6.2 miles).
The Ironman triathlon is a 3.86 km swim (2.4 miles), a 180.3 km bicycle ride (118 miles) and a 42.2 km run (26.2 miles), a standard marathon like the Boston Marathon. Can you imagine that?….swim about 2 1/2 miles, bike 118 more miles, and then run a full marathon (26.2 miles)?
Bill Lentz, Erin Toohey’s father, competed in the Clydesdale Ironman bracket, which is for large men, who are at least 220 pounds. If a person is competing in an Ironman Triathlon, it’s an extremely safe bet that at 220 pounds+, you’re pretty much all muscle.
Despite all the research and modern medicine, we don’t even know how or why people get Parkinson’s. In late 2012, Bill Lentz was diagnosed with Parkinson’s disease. It was her father’s diagnosis that inspired Erin to run for Team Fox–which she’s done three times, completing in the Chicago Marathon once, and the New York Marathon twice.
Bill Lentz is why Brendan is running the London Marathon as a member of Team Fox, raising money for The Michael J. Fox Foundation, whose sole goal is “Eliminate Parkinson’s Disease in Our Lifetime”.
Virtually all money raised by The Michael J. Fox Foundation goes toward research to end Parkinson’s disease, and ALL money raised by Brendan as part of the London Marathon will go towards this research. The Michael J. Fox Foundation is one of the two most efficient charities in the US concerned with health, with 88 cents of every dollar going to research.
CharityWatch, the only independent charity watchdog in the US, gives The Michael J. Fox Foundation an A+ for their efficiency in spending donated money towards their goal, instead of on overhead. In the charity category of 26 charities specifically involved with health, the only other A+ is the American Kidney Foundation.
Given that the average citizen isn’t in shape to run even one mile, you’d expect it to be easy enough to get one of the 40,000 London Marathon slots, but it isn’t. The four ways to participate in this race are by 1) top results in sanctioned marathons, 2) by a general lottery (called ‘the ballot’) for people who have run sanctioned marathons–last year 350,000 people applied for 18,000 places, 3) by belonging to a British Athletic Club (spots are allocated), or 4) for a charity (spots are allocated).
Because of the competitive nature of participating in the London Marathon, people running for a charity must prove that they can actually raise a certain amount of money for that charity. In Brendan’s case, he had to guarantee he’d raise $7,500.
Thanks to donations from friends, family, co-workers and a recent fundraiser at Seven Saws Brewing Company, Brendan has already passed the $7,500 mark. If he hadn’t, he’d have had to make up the difference himself. Additional donations to Brendan’s efforts are most definitely appreciated, and all will go to Parkinson’s research.
Brendan noted that Princeton residents have been extremely generous, and he said when he’s on his long runs, he’s driven to continue through tough spots because so many people have stepped up to support his fundraising efforts, because many also have a personal connection to Parkinson’s.
Current Parkinson’s research and treatments
Parkinson’s involves a degeneration of nerves in the brain, in an area of the brain called the substantia nigra, which controls body movement. When this degeneration occurs, the level of dopamine produced, which coordinates millions of nerve cells and muscles, drops to levels that make control of muscles and movement difficult to impossible.
As to what causes this nerve degeneration known as Parkinson’s, suspicion surrounds a herbicide called Paraquat, and there currently are cases in court over this alleged connection. As a comparison, Roundup (which contains glyphosate) is also a herbicide that’s gotten a lot of negative publicity lately, but Paraquat is 28X more toxic to humans than glyphosate.
Pinpointing an exact cause is so difficult. The first documented case of Parkinson’s, and how it got its name, was in 1817, when the neurological symptoms were described for the first time by the English physician, James Parkinson. References to similar symptoms can be found even earlier. This pretty much rules out the idea that Parkinson’s is caused exclusively by Paraquat, because that was first created in 1961. Other possible causes include environmental toxins and genetic factors (it can, although rarely, be inherited).
Currently, due to its toxicity, Paraquat is very strictly controlled in the US and Europe, but it is still widely used in many parts of the world as a herbicide (from countries where agricultural products could very well be exported into the US). Regardless, the basic answer to how and why people contract Parkinson’s remains simply that “we don’t know”.
However, some correlations let us know that men are more likely to have Parkinson’s than women, and that the disease is most common with people over 55. Here again, however, there are many exceptions. Parkinson’s does not discriminate. Some famous people with Parkinson’s include:
–Michael J. Fox, who was diagnosed with Parkinson’s at 30 years old.
–Muhammad Ali, who it is believed to have gotten Parkinson’s as a result of boxing.
–Johnny Cash, Janet Reno, Billy Graham and Pope John Paul II all had Parkinson’s disease.
Quite a bit of research is going into Parkinson’s, including stem cell research, which seems to me to be the most promising, since Parkinson’s is a result of nerve degeneration, which appears to be caused by many different factors.
Parkinson’s may simply be the result of these specific dopamine producing nerves’ degeneration, regardless of the cause of the degeneration. The hope of stem cell research is to be able to grow new nerve cells to replace the old degenerated cells, but how that would happen is certainly beyond me and the scope of this story.
One of the most frustrating aspects of Parkinson’s research, or any medical research for that matter, is the long time delays between a new idea or discovery, the clinical trials, and the product actually becoming available to the people it will help–it can literally take multiple decades. For a product to become available to the public, it has to be shown to be safe, and that it actually works as intended. One of the primary goals of The Michael J. Fox Foundation is dedicating money and effort to speeding up the approval process, something which Brendan is very excited about.
“The Michael J. Fox Foundation exists for one reason: to accelerate the next generation of Parkinson’s disease treatments. In practice, that means identifying and funding projects most vital to patients; spearheading solutions around seemingly intractable field-wide challenges; coordinating and streamlining the efforts of multiple, often disparate, teams; and doing whatever it takes to drive faster knowledge turns for the benefit of every life touched by Parkinson’s disease. In principle, it means leveraging our core values of optimism, urgency, resourcefulness, collaboration, accountability and persistence in problem-solving to work on behalf of the 6 million people worldwide living with Parkinson’s”.
—The Michael J. Fox Foundation
Other areas showing promise are a wide variety of drugs which seek to mitigate the effects of Parkinson’s (stiffness, tremors/shaking, loss of balance, etc.), by stimulating the body to produce more dopamine. Levodopa is considered by many doctors to be the ‘gold standard’ for treatment…it is transformed by the body into dopamine. However, it doesn’t cure Parkinson’s, and only helps treat the symptoms, with many side effects.
The other major approach, which is promising, is surgery, of which there are various types, but the one that has helped Bill Lentz immensely, is in a way a connection as noted in the beginning of this article. This result of the surgery is quite similar to having a pacemaker implanted in your body (this Parkinson’s surgery is called DBS, for ‘deep brain stimulation’). Similar to a pacemaker, there are wire leaders attached to the implant that terminate at areas of the brain that have degenerated, and to which electrical signals are sent. This stimulates the brain, and seems to bring parts of the brain ‘back to life’, reducing symptoms including stiffness and/or tremors.
To further the quality of life, if a patient is fit enough, completes rigorous cognitive testing, and has responded well to the first surgery, a second similar surgery may be done, sending electrical signals to the other side of the brain. Bill Lentz qualified for this second surgery, and the results have been excellent.
This is cutting edge surgery for Parkinson’s, and was done at the Mayo Clinic. According to Erin, before his first surgery, he wasn’t able to consistently stand from his chair without assistance. Now, after this surgery, he is able to live his life with an improved mood, a sound sleep, and is able to exercise again, including riding alone on his e-bike. Although it’s not a cure for Parkinson’s, it’s an amazing improvement to how he’d be living without it.
Bill is still an “Ironman”, defying Parkinson’s. It’s that mentality that helps propel him through the challenges. Following his second surgery in January 2023, there has been a vast improvement in his stamina, reduced pain levels, and endurance. The surgery is not for everyone, but it’s made a huge difference in the lives of Bill and his family.
It was this surgery that allowed Bill Lentz to walk his daughter Erin down the aisle, at Erin and Brendan’s wedding ceremony. Without the research and work funded by The Michael J. Fox Foundation for Parkinson’s research, this might not have been possible
What’s nice for Erin and Brendan is that there’s more to this trip than just running a really long race. They have close friends who live in London, who they’ll see, and it is one of their favorite places to visit.
Erin’s mother is also contributing to the fundraising for Team Fox by participating in a virtual bike ride, involving 60,000 people.
If you’d like to contribute to Brendan’s London Marathon fundraising and the one and only goal of The Michael J. Fox Foundation–to end Parkinson’s in our lifetime, you can do so here: Brendan Toohey: Team Fox fundraiser
“When the cure for Parkinson’s is found — and it will be — it will be because of all of us.” – Michael J. Fox