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This was supposed to be a column about Irish women writers. Everyone knows I’m serious about Irish writers, but this column is about something even more serious. It’s the most personal column I have ever written. My husband, Earl Carstens, was diagnosed with Parkinson’s disease in 2021. March 5, 2021, to be exact. That means we have reached the fifth anniversary of his diagnosis. However, his doctor said he had probably had it for 10 years.
That’s the thing about Parkinson’s disease. It’s insidious. It sneaks into your life. Most people know about the tremors and the shuffling steps, but there are so many earlier signs that, on their own, don’t mean anything. However, when they’re seen together, they are typically pointing to Parkinson’s. Unfortunately, people don’t know that until they seek medical attention for the obvious motor symptoms. It doesn’t stop there, either.
New and varied non-motor symptoms continue to manifest while the motor symptoms worsen.
This column is dedicated to books that feature Parkinson’s disease. Not Parkinson’s as the primary focus - instead, they focus on inspiration, strength, resolve, determination, hope, and love.
“The Ribbon of Road Ahead” is Carol Clupny’s story of her journey through Parkinson’s disease, including three hikes along Spain’s Camino de Santiago, two tandem-bike rides across Iowa, and Deep Brain Stimulation surgery.
I love the title of Nan Little’s “If I Can Climb Mt. Kilimanjaro, Why Can’t I Brush My Teeth: Courage, Tenacity & Love Meet Parkinson’s Disease.” As you might suspect, Nan Little scaled Mt. Kilimanjaro (not to mention Machu Pichu) after being diagnosed with Parkinson’s disease. She was also Carol Clupny’s mentor when she wanted to learn about cycling with Parkinson’s. While there are medications to treat the symptoms of Parkinson’s, there is no cure. (My own husband takes a cocktail of 25 pills each day, 23 of which address some symptom of Parkinson.) The only factor known to slow the progression of the disease is exercise. When Nan learned of studies showing the positive effects of high cadence cycling on Parkinson’s, she embraced the Pedaling for Parkinson’s program and the role of advocate.
The death of Ozzy Osborne last year highlighted the number of celebrities diagnosed with Parkinson’s disease. There are plenty of names you know: Muhammad Ali, Billy Graham, Alan Alda, Neil Diamond, former UGA coach Mark Richt, and most notably Michael J. Fox. The founder of the Michael J. Fox Foundation for Parkinson’s Research, he has also written several books in which he shares his rise to stardom, his diagnosis with young onset Parkinson’s Disease at the height of his career, the genesis of MJFF, his decision to leave his television career, his faith, family, and life with candor and humor. These books include “Lucky Man,” “Always Looking Up,” “No Time Like the Future.” (Also watch him in Season 3 of Shrinking on AppleTV.)
With 90,000 people diagnosed with Parkinson’s disease annually, you probably know, or will know, someone with this diagnosis - a loved one, a neighbor, a colleague. This month I would like to issue a challenge - three challenges, really.
First, read at least one of these books to gain a better understanding of the experiences of people with Parkinson’s.
Second, take a moment to visit the Parkinson’s Foundation at parkinson.org to search for the “Ten Early Signs of Parkinson’s.” We were flabbergasted when we learned all the symptoms Earl had been manifesting, but we had no idea they were related to Parkinson’s.
Third, consider participating in my Reading Challenge this month. For each book you read in March, donate to the Parkinson’s Foundation: $1/book, $5/book (for our fifth PD anniversary,) $10/book - whatever you want. Use the QR code above to make donating easy. Your support helps the Parkinson’s Foundation improve the lives of people with Parkinson’s, conduct groundbreaking research, train medical professionals (only 9% of people with Parkinson’s have access to a movement disorder specialist,) and provide resources and information to the Parkinson’s Community. A donation of just $35 can provide resources to six people with Parkinson’s. That may not seem like much, but for those six people, it may be just the information they need. Imagine what we could do with 100 donations of $35. (Even if you’re not much of reader, you can donate, too.)
Thank you for your support and, as always, happy reading.
That’s the thing about Parkinson’s disease. It’s insidious. It sneaks into your life. Most people know about the tremors and the shuffling steps, but there are so many earlier signs that, on their own, don’t mean anything. However, when they’re seen together, they are typically pointing to Parkinson’s. Unfortunately, people don’t know that until they seek medical attention for the obvious motor symptoms. It doesn’t stop there, either.
New and varied non-motor symptoms continue to manifest while the motor symptoms worsen.
This column is dedicated to books that feature Parkinson’s disease. Not Parkinson’s as the primary focus - instead, they focus on inspiration, strength, resolve, determination, hope, and love.
“The Ribbon of Road Ahead” is Carol Clupny’s story of her journey through Parkinson’s disease, including three hikes along Spain’s Camino de Santiago, two tandem-bike rides across Iowa, and Deep Brain Stimulation surgery.
I love the title of Nan Little’s “If I Can Climb Mt. Kilimanjaro, Why Can’t I Brush My Teeth: Courage, Tenacity & Love Meet Parkinson’s Disease.” As you might suspect, Nan Little scaled Mt. Kilimanjaro (not to mention Machu Pichu) after being diagnosed with Parkinson’s disease. She was also Carol Clupny’s mentor when she wanted to learn about cycling with Parkinson’s. While there are medications to treat the symptoms of Parkinson’s, there is no cure. (My own husband takes a cocktail of 25 pills each day, 23 of which address some symptom of Parkinson.) The only factor known to slow the progression of the disease is exercise. When Nan learned of studies showing the positive effects of high cadence cycling on Parkinson’s, she embraced the Pedaling for Parkinson’s program and the role of advocate.
The death of Ozzy Osborne last year highlighted the number of celebrities diagnosed with Parkinson’s disease. There are plenty of names you know: Muhammad Ali, Billy Graham, Alan Alda, Neil Diamond, former UGA coach Mark Richt, and most notably Michael J. Fox. The founder of the Michael J. Fox Foundation for Parkinson’s Research, he has also written several books in which he shares his rise to stardom, his diagnosis with young onset Parkinson’s Disease at the height of his career, the genesis of MJFF, his decision to leave his television career, his faith, family, and life with candor and humor. These books include “Lucky Man,” “Always Looking Up,” “No Time Like the Future.” (Also watch him in Season 3 of Shrinking on AppleTV.)
With 90,000 people diagnosed with Parkinson’s disease annually, you probably know, or will know, someone with this diagnosis - a loved one, a neighbor, a colleague. This month I would like to issue a challenge - three challenges, really.
First, read at least one of these books to gain a better understanding of the experiences of people with Parkinson’s.
Second, take a moment to visit the Parkinson’s Foundation at parkinson.org to search for the “Ten Early Signs of Parkinson’s.” We were flabbergasted when we learned all the symptoms Earl had been manifesting, but we had no idea they were related to Parkinson’s.
Third, consider participating in my Reading Challenge this month. For each book you read in March, donate to the Parkinson’s Foundation: $1/book, $5/book (for our fifth PD anniversary,) $10/book - whatever you want. Use the QR code above to make donating easy. Your support helps the Parkinson’s Foundation improve the lives of people with Parkinson’s, conduct groundbreaking research, train medical professionals (only 9% of people with Parkinson’s have access to a movement disorder specialist,) and provide resources and information to the Parkinson’s Community. A donation of just $35 can provide resources to six people with Parkinson’s. That may not seem like much, but for those six people, it may be just the information they need. Imagine what we could do with 100 donations of $35. (Even if you’re not much of reader, you can donate, too.)
Thank you for your support and, as always, happy reading.
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