We’ve rounded up 10 of the very best blogs on the web about Parkinson’s disease. In addition to giving insight into life with the condition, there are blogs that round up the latest research into Parkinson’s and others dedicated to keeping fit. Whether you are looking for advice, support, motivation, or simply people sharing their experiences with Parkinson’s, you can find it all in these blogs.
Find out which blogs we recommend for:
- Real Life
- Research
- Exercise
Top Parkinson’s Disease Blogs: Real Life
Twitchy Woman – My Adventures With Parkinson’s Disease
The name Twitchy Woman, as well as being an apparent nod to the Eagles, refers to the twitch Sharon Krischer noticed while recovering from a broken leg in 2008.
That was the first step en route to her diagnosis of Parkinson’s disease, a diagnosis that also helped explain various symptoms Sharon had noticed prior to breaking her leg.
In the decade that has passed, Sharon has become a compulsive researcher and has subsequently acquired a significant amount of knowledge about Parkinson’s. Since 2015, she has shared that knowledge with the world in the form of her blog.
She also shares her own experiences, with topics ranging from clinical trials she has participated in, to exercise (boxing, yoga, and tennis in particular), to travel, and everything in between. Regardless of the topic, the vast majority of posts are connected by one common theme: living well with Parkinson’s.
Sharon certainly seems to be doing just that, and her blog has something to offer for anyone looking for advice, support, or inspiration to do likewise.
“I started the blog because I was getting calls and emails to meet with newly diagnosed people, from their friends, family members, and sometimes even my doctors.
“I have noticed, as have others who are also meeting with new Parkies, that peer-to-peer support (not support groups) is key for the newly diagnosed to learn that they are not alone, and that there are others like them who have been through this before them and can give emotional support.
“I started writing the blog to be able to reach out to more people and share my experiences with them as a person with PD, something that was not available to me when I was diagnosed.”
– Sharon Krischer, Twitchy Woman
Studio Foxhoven
Terri Reinhart’s blog, Studio Foxhoven, is far from ‘a blog about Parkinson’s disease’. Rather, it is a frank, honest, and often humorous journal of any and every aspect of her life that she deems worthy of writing about. It just so happens that some of those aspects are, in part, shaped by Parkinson’s, with which she was diagnosed in 2007.
Terri began writing her blog the year after her diagnosis and has continued doing so ever since.
Prior to starting her blog, Terri’s artistic side was expressed primarily with craftwork (examples of which can be found in the ‘gallery’ part of her website) rather than writing. Nonetheless, she has a way with words that makes her blog entertaining and engaging.
She is opinionated and thoughtful, with the ability to convey both elements with more than a sprinkling of dry wit. No doubt 2019, which has started with a long distance move from Colorado to New England, will provide more of the same.
“Why do I write? Mostly because it's a way to process all the changes in my life, our lives, as we get older and negotiate health issues. It’s gentler than yelling or hitting something.”
– Terri Reinhart, Studio Foxhoven
Other posts you may be interested in on the MyTherapy blog:
- 4 Facts About Parkinson’s Disease That Will Surprise You
- Apple Watch: Tracking Parkinson’s Symptoms is Another Step in Apple’s Drive into Healthcare
The Perky Parkie
Prior to being diagnosed with Parkinson’s at 32 years old, Allison was diagnosed with juvenile rheumatoid arthritis in her teens and survived colon cancer in her mid-20s. She started writing Perky Parkie in 2013 as a way to connect with other people around the world living with Parkinson’s.
Allison has the ability to strike a fine balance between whimsy and solemnity in her writing, often addressing even the most difficult topics with a helping of both.
Surgeries and subsequent complications, for example, made 2018 an extremely testing year for Allison. She is open and honest about this in her writing, yet her humor and personality still shine through as strongly as ever.
The number of comments her posts attract and the activity on her social media page are a testament to Allison’s ability to engage people with a combination of emotive and entertaining content.
A Soft Voice
Karl Robb was diagnosed with Parkinson’s in his early 20s, having experienced symptoms since his teenage years.
In the three decades since, Karl has authored two books, has been featured across the web, and become a public speaker and patient advocate.
In amongst all of that, he maintains his blog, A Soft Voice in a Noisy World, which has just entered its eleventh year of existence. In the last couple, Karl and his wife, Angela, have also become regular authors on ParkinsonsDisease.net.
You may be able to gather that the couple has plenty of words of wisdom to impart to the world.
As the name of his blog suggests, the tone of Karl’s writing is gentle; he focuses a lot on traits such as empathy, kindness, and generosity, and their importance both in general life and in ways specifically relating to Parkinson’s disease. He often calls on his own experiences to reinforce the points he makes in his posts.
Aside from that, Karl says he encourage his readers to seek out and be more open to more complementary medicine options, like reiki, massage, yoga, reflexology, Rock Steady Boxing, and exercise.
In the years since starting A Soft Voice, Karl has certainly made good on his ambition to make it a place to support other people living with Parkinson’s disease. There is little to suggest he will stop doing so any time soon, making A Soft Voice well worth a follow in 2019.
Off and On: The Alaska Parkinson’s Rag
Peter Dunlap-Shohl leads a support group for people with Parkinson’s disease in Anchorage, Alaska. In 2008, he started The Alaska Parkinson’s Rag as an online meeting place for people of Anchorage specifically and as a kind of notice board for the support group.
While it still fulfills that role today, much of the content Peter posts will be of interest to anyone living with Parkinson’s, regardless of geographic location. Peter occasionally republishes posts he writes for the Northwest Parkinson's Disease Foundation’s blog and a series called PD Pundit he writes for ParkinsonsDisease.net.
To say he ‘writes’ the latter only tells half the story, as the PD Pundit series is actually a collection of comics focusing on life with Parkinson’s. Peter is a talented cartoonist; his book, My Degeneration: A Journey Through Parkinson’s is a graphic novel of his experiences with the condition that has been extremely well received for its unique, revealing, and humorous reflection on life with Parkinson’s.
Peter’s varied talents are all evident in his blog, making The Alaska Parkinson’s Rag, and its links to other sites featuring Peter's work, worth reading no matter where you live.
“I had a variety of ideas about what the value of what I do could be to a person looking for the experience of others as a guide to what their own Parkinson's journey would hold.
“One obvious set of tools I brought to the table is my cartooning skills. I thought it would be interesting to watch my drawing over time to see how it was affected by PD.
“I expected to go from competent to line butcher. Which is pretty much what happened, until my DBS operation, which restored much of my ability to draw. 17 years after my diagnosis, I have different goals for the blog.
“My aim now is to provide credible hope to people looking for leverage against this disease.
“If a guy way up in Alaska can still be tying his own shoes, riding his bike, and making drawings this long after diagnosis maybe there is a way forward for a person who has the same dreaded disease.”
– Peter Dunlap-Shohl, Off and On
Parkie Support
Some of the most insightful blogs come from people who, prior to their diagnosis, had little knowledge of Parkinson’s disease and must make sense of an overwhelming amount of information.
It is a process Fran Lo went through when she was diagnosed with Parkinson’s and was the catalyst for her starting her blog, Parkie Support, in 2017.
One of the interesting aspects of Fran’s blog is her knack for calling out possible ‘quacks’ – those who claim to have a miracle cure or treatment for diseases like Parkinson’s. Many, tragically, are merely preying upon people who are desperate and thus prepared to try alternative treatments. Fran takes it upon herself to dig deeper into both the individuals claiming to have developed an innovative treatment or cure, as well as the supposed science involved.
Fran also analyzes and participates in clinical trials, offering her honest opinions and insights.
Combined with other musings about life with Parkinson’s, Parkie Support is a diverse and interesting blog.
“I write the blog thinking about what I wish I had known when I was first diagnosed; if it helps pwp (people with Parkinson's) then I've done my job.”
– Fran Lo, Parkie Support
Top Parkinson’s Disease Blogs: Research
Journey with Parkinson’s
Frank Church was diagnosed with Parkinson’s Disease in 2014 at the age of 60.
He began writing his blog, Journey with Parkinson’s, the following year, updating it regularly ever since. Like other bloggers listed here, he also contributes to ParkinsonsDisease.net..
Frank has a bucket-load of quotes, from which he usually plucks a couple of appropriate ones to introduce each post and another for the conclusion. The type of quotes he chooses generally gives away the nature of the post; insightful and meaningful quotes may indicate a thoughtful piece of writing awaits, while ones from medical professionals usually commence a post on science, research, treatment, and other such topics.
Regarding the latter, Frank’s experience as a biomedical science researcher means he is able to digest complicated scientific and medical information better than most, while his experience as an educator helps him relay the information in a more accessible manner.
Those abilities, Frank’s willingness to discuss his own experiences with Parkinson’s disease, and his compelling writing ability, all combine to make Journey with Parkinson’s worthy of a place on your reading list.
“An important recurring theme of the blog is to remind the reader that their life matters now with Parkinson’s as much as it did before Parkinson’s.
“Additionally, I try to write posts on ways to focus on a forward-living strategy (e.g., exercise, mindfulness, remaining hopeful and educated) against the constant negative-presence of Parkinson’s.
“Furthermore, I try to provide the ‘translation’ of science and medical findings such that a non-scientist can more easily understand and better appreciate the work.”
– Frank Church, Journey with Parkinson’s
Science of Parkinson’s
Given the name of the blog, the fact that Science of Parkinson’s is focused on the latest research developments comes as little surprise.
It is maintained by Dr. Simon Stott and, according to its tagline, aims to deliver the latest happenings in the world of Parkinson’s research in plain English.
Simon’s vast experience helps him deliver on this aim with aplomb. Simon has worked in the field of Parkinson’s research for over 15 years. Prior to his current role as Deputy Director of Research at the Cure Parkinson’s, he was a Parkinson’s research scientist at the University of Cambridge.
Making complicated scientific text understandable to a wide audience without excluding important information is a difficult balance to achieve. To do so, Simon calls on pictures, illustrations, videos, analogies, or any other methods that are of benefit. He is also rather adept at predicting the questions a reader may have, answering them before you have had a chance to ask them.
The results of Simon’s efforts are posts that are in-depth, insightful, and analytical, yet accessible and understandable.
Top Parkinson’s Disease Blogs: Exercise
Parkinson FIT
Brett Warthen was diagnosed with Parkinson’s disease in 2014, in his mid-40s. Since his diagnosis, he has focused on using exercise to fight Parkinson’s, working with a personal trainer and Rock Steady Boxing (RSB), which has been designed specifically to benefit people living with Parkinson’s.
Brett is a certified RSB Coach who leads classes as a substitute when needed, and he has completed two half marathons since his diagnosis. His blog is a wonderful resource for anyone with Parkinson’s seeking support and advice regarding exercise and physical activity. In particular, a post on skiing with Parkinson’s has attracted interesting comments and advice from others.
In addition to exercise, Brett believes that learning and laughter are essential to brain health and living well with Parkinson's. The Parkinson.fit website is constantly updated with interesting news and information of interest to people with Parkinson's, always offering an opportunity for learning, with occasional humorous distractions.
Parkinson’s Fitness
Keith and Linda Hall started Parkinson’s Fitness along with a friend, Marilyn Freeman, after Keith was diagnosed at 55 years old, offering training classes in Boston’s North Shore.
Aside from the classes, the website features a blog that rounds up news and offers tips relating to exercise and Parkinson’s, including bowling, yoga, and boxing. The latter has become hugely popular for people with Parkinson’s in recent years, appearing to help skills such as balance, agility, and hand-eye coordination that are often impaired by the condition.
The blog also offers general health tips for people living with Parkinson’s and updates from the classes.
While some of the content is specific to the classes, there is plenty of information shared within the blog that can benefit people living with Parkinson’s, regardless of location.
Take a look at some of the other posts on the MyTherapy blog:
