Why Hope Is Important to Living Well With Parkinson’s

Why Hope Is Important to Living Well With Parkinson’s

A friend forwarded me a video of an excellent inspirational and entertaining commencement address by legendary college football coach Lou Holtz. On the surface, it has nothing to do with living with Parkinson’s. He does not have PD, and he was addressing newly minted college graduates ready to take on the world. But when he said the following, I felt like he was speaking to me directly, right here and now: You have to have something to hope for, something to dream. And even though you’ve done great things so far, what’s going to happen now? I think the coach’s ...
Buried Treasure (What Parkinson’s Gave Me)

Buried Treasure (What Parkinson’s Gave Me)

How Parkinson’s gave me a better long-range jumper, a better baseball throwing arm, and a better outlook on life! I was diagnosed with Parkinson’s disease over a decade ago. I was 38. Parkinson’s is chronic, degenerative, and without a cure. Yet, over the last several years I’ve steadily improved my basketball and baseball games, deeply learning my capabilities in the process. Oh, and I also found both peace and purpose through Parkinson’s somewhere along the way! Parkinson’s is a neurological condition with full-body consequences. Most people’s Parkinson's troubles are movement-related. Some are most troubled by what’s referred to as non-motor ...
Jimmy Choi - “Find Something That Moves You, and Move!”

Jimmy Choi – “Find Something That Moves You, and Move!”

Diagnosed with PD in 2003, at the young age of 27, Jimmy Choi spent 8 years in a combination of denial and self-pity, until he found the strength and resolve to regain control of his life. Jimmy’s story is best told by the videos included below. We all can’t become elite athletes like him...but that’s not what makes his story special. As he says in one of the videos below, his American Ninja Warrior experience gave him his 15 minutes of fame, and presented an opportunity for people to hear his message. His advice to others is simple and succinct: ...
Control You, Control Your Parkinson's

Control You, Control Your Parkinson’s

What if there’s a way to ensure Parkinson’s never has control over us again? Is this possible? The mind is often our biggest enemy. Alternatively, it can be trained to serve... The thing with Parkinson’s is the loss of control - the slow, constant erosion of execution of our will, and resulting deferral to Parkinson’s. We want to move easily. We can’t. We want to be pain-free. We’re not. We want to sleep well. We don’t. We want to connect with the people around us. We won’t. Controlling Our Own Suffering. When we control our suffering, as opposed to letting suffering ...
64-year old New Jersey man was planning a 3,000 mile run - Now diagnosed with PD, will run 1,100 miles

64-year old New Jersey man was planning a 3,000 mile run – Now diagnosed with PD, will run 1,100 miles

64-year old Larry Grogin had planned as a 3,000-mile, USA coast-to-coast run this  summer. But a recent Parkinson's disease diagnosis prompted an adjustment to his plans. Over the course of 30 days, he is now preparing to run a total of 1,100 miles in eight different areas of the country. His route will take  him through parts of New Jersey, Pennsylvania, Massachusetts, Illinois, Wisconsin, Georgia, Tennessee, Colorado, Oregon and California. View his schedule here. Grogin ran in the 2013 Boston Marathon and was about 50 feet from the finish line when the first pressure cooker bomb exploded. Three people and numerous ...
Oddities and Opportunities in Movement During Parkinson's Off Periods

Oddities and Opportunities in Movement During Parkinson’s Off Periods

When my PD medication wears off, I struggle. But there are times that I actually enjoy the challenge of moving that I face after 11 years of living with PD. There’s a reason they recommend exercising when your medication is working and you are on. But, I also find satisfaction in challenging my body when the meds wear off. There are a surprising number of ways around my body's persuasive argument that it just can't do what I'm asking it to. Unfortunately, it's rarely easy. Falling can, and sometimes does occur, and I try to learn from it. As the ...
The brain-changing benefits of exercise - Wendy Suzuki

The brain-changing benefits of exercise – Wendy Suzuki

Wendy Suzuki is a neuroscientist at New York University who studies brain plasticity (the ability of the brain to change over time) and how aerobic exercise can be used to improve learning, memory and higher cognitive abilities in humans. If you are not among the 3 million people who have already watched her video “The brain-changing benefits of exercise”, you might find her video inspirational and enlightening. (And don’t forget that caregivers need exercise too.) ...
Nenad Bach & Ping Pong Parkinson

Nenad Bach & Ping Pong Parkinson

From the first time I saw stories about Ping Pong Parkinson, I was sold. I’ve always enjoyed ping pong, even though I’m horrible at the game, and I spend 90+% of the time chasing the ball around the room. So, come to think of, I’m not really sure that I do like ping pong. I like the idea of it, but chasing the little ball around the room, and especially when the ball rolls under a piece of furniture…that is not so much fun. But I do have fond memories of ping pong in my youth, playing in my friend ...
Jon Pawelkop – 50 State Rock Steady Boxing Tour

Jon Pawelkop – 50 State Rock Steady Boxing Tour

Congratulations to Jon Pawelkop, who just completed his goal of visiting a Rock Steady Boxing affiliate in every one of the 50 states. Jon believes in the Rock Steady program and wanted to spread the word about how RSB is changing the lives of thousands of people with Parkinson’s. Read about his journey via his Facebook group: https://www.facebook.com/groups/625146757836705/ ...
Gavin Mogan - Parkinson’s Si Buko

Gavin Mogan – Parkinson’s Si Buko

Gavin Mogan has lived with Parkinson's for 11 years, and finds exercise and a positive attitude essential to maintaining a good quality of life. He is also a certified personal trainer in Richardson, Texas, offering personal and group training, with a particular focus on helping others battling Parkinson's or other health issues. Gavin's website is https://yourmove.fitness. [Update: Gavin is also now a contributing author on this website. View his contributions here: https://parkinson.fit/author/gavinmogan] Gavin recently traveled to Uganda, to learn from, and to offer support to a Parkinson's advocacy program in that country.  On his blog, he wrote about this experience, sharing ...
WPC2019: Video Competition Grand Prize Winner

WPC2019: Video Competition Grand Prize Winner

The opening ceremony of World Parkinson Congress 2019 was a definite highlight of the event. As expected, it featured a moving tribute to Tom Isaacs, who passed away in 2017. Tom was a co-founder of Cure Parkinson’s Trust (CPT) in the UK, one of the premier global charities funding Parkinson’s research. In addition to leading CPT, Tom’s outsized personality encouraged us all to live well with Parkinson’s Disease, and he was an active participant in past WPC events. Anders Leines’ video, which was in large part, a tribute to Tom Isaacs, was selected as grand prize winner of the WPC ...
WPC2019 : John Ball - (Still) Living Well and Running Hard

WPC2019 : John Ball – (Still) Living Well and Running Hard

My favorite part of World Parkinson Congress is the people with Parkinson’s, particularly the ones you encounter in the Book Nook and Poster Hall. Yesterday, I had the pleasure of meeting John Hall, author of one of my favorite books about living with Parkinson’s, “Living Well, Running Hard: Lessons Learned from Living with Parkinson’s Disease” ...
WPC2019 : Linda K. Olson - If I Can Do It, You Can Do It, Get Out And Go

WPC2019 : Linda K. Olson – If I Can Do It, You Can Do It, Get Out And Go

Wow...my words are inadequate to describe the inspirational intensity of WPC2019 opening session keynote speaker Linda K. Olson. In 1979, at the age of 29, Linda lost both her legs above the knee and her right arm in a “train vs. car accident” in Germany. She told her husband of 2 years, who was less seriously injured in the accident that if he wanted to leave her, she’d understand.  He responded “I didn’t marry your arms and your legs … if you can do it, I can do it.” They chose to focus on what they could do, not what ...
Fred Schwab takes on the Pittsford (NY) Triathlon

Fred Schwab takes on the Pittsford (NY) Triathlon

It took Fred Schwab over 10 years to figure out that symptoms he was experiencing were actually Young Onset Parkinson's Disease. Since diagnosis, he's focused on exercise, especially with a local Rock Steady program. This morning he's competing in a triathlon in Pittsford, New York to raise funds for PD research, and awareness for the importance of exercise to improve Parkinson's symptoms: https://www.whec.com/news/man-with-parkinsons-disease-to-compete-in-pittsford-triathlon/5372853/ ...
David Sangster - DBS Surgery Before/After

David Sangster – DBS Surgery Before/After

David Sangster was diagnosed with young onset Parkinson’s Disease 8 years ago at the age of 29, and has been extremely active as an advocate for Parkinson’s issues in the UK. Worsening motor symptoms and Dyskinesia led him to consider Deep Brain Stimulation (DBS). Last week, he shared a powerful before and after DBS video: A few weeks ago, he shared his excitement about regaining control of his Parkinson’s symptoms: David is an extremely talented filmmaker, and you can find many more great videos on his YouTube channel: https://www.youtube.com/channel/UCJPBS3iDO2ZM-crp2R2cwbQ ...
Pucks for Parkinson's

Pucks for Parkinson’s – Scott Carlisle

Scott Carlisle was diagnosed with Parkinson’s disease 5-1/2 years ago. Playing hockey is an activity helps him with movement and balance. He and his brother Royce started the Pucks for Parkinson’s Foundation in Ames, Iowa, to raise money for PD research, and promote awareness for the importance of exercise and physical activity, such as hockey, to improve Parkinson's symptoms: https://whotv.com/2019/05/31/man-uses-hockey-to-help-others-with-parkinsons-disease/ https://kdsm17.com/news/local/solace-on-the-ice-urbandale-man-living-with-parkinsons-calls-hockey-his-best-medicine ...
June 2, 2019 - Parkinson's Weekly Update

June 2, 2019 – Parkinson’s Weekly Update

Weekly Update - Highlights include: World Parkinson Congress 2019 heads to Kyoto, Japan for the epic battle of "Parkinson's Disease vs. Chopsticks - Will We Go Home Hungry?"; focused ultrasound and PD; NIH awards $3 million grant for 5-year PD exercise study; deteriorating financial skills, dementia and brain plaques; hockey pucks for Parkinson's; inspiring people with PD; how DBS changes lives for the better; does PD cause low testosterone or is it something else; PD exercise programs in the news and more ...
BBC reporter Rory Cellan-Jones urges 'openness' on Parkinson's

BBC reporter Rory Cellan-Jones urges ‘openness’ on Parkinson’s

BBC News reporter Rory Cellan-Jones was reporting from Covent Garden, giving a report as  the first ever news broadcast using a public 5G network in the UK. After millions of viewers tuned in to watch the event on BBC Breakfast, a handful of people noticed his shaky hand. Their comments prompted the journalist to reveal that it was a physical symptom of his recently diagnosed Parkinson’s Disease. Cellan-Jones wrote on Twitter: "A couple of people have noticed my hand shaking in my live 5G broadcast today. So seems a good time to reveal that I’ve recently been diagnosed with Parkinson’s. I’m getting ...
Jonny Acheson Draws The Story Of His Diagnosis

Jonny Acheson Draws The Story Of His Diagnosis

Three years ago, Jonny Acheson, a doctor based in Leicester, UK, decided to “draw the story of his diagnosis”. Since then, he has been sketching out his Parkinson’s symptoms, as well as using them to produce a series of short films about the condition – one of which is from the perspective of his nine-year-old daughter.  Parkinson's Life talks to Jonny about the difficulties of working in a busy emergency room with Parkinson’s, how his faith gives him strength – and what a child’s perspective can reveal about the condition: https://parkinsonslife.eu/parkinsons-through-my-9-year-old-eyes/ ...
Parkinson's Poet - Wayne A. Gilbert

Parkinson’s Poet – Wayne A. Gilbert

Wayne A. Gilbert’s “PD Refusenik” is an entertaining and introspective protest of a conscientious objector being asked to battle Parkinson’s. Wayne is, among other things apparently, a lover, not a fighter...but Parkinson's is a formidable opponent in another poem "Parkinson's Is Nothing Like Boxing". He is also a retired teacher and professor of English and of Educational Psychology. He was diagnosed with Parkinson’s in 2005 and has been writing about his experiences living with it ever since. I have enjoyed the performances by Wayne A. Gilbert that have been shared by the Davis Phinney Foundation over the past few weeks, including these highlights: ...
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