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Linda K Olson

Last year, the opening session of the World Parkinson Congress featured a speaker who literally took a terrible situation and turned it into an incredibly positive experience. The woman who turned everything upside down for us was Dr. Linda K. Olson. With a smile on her face, she proceeded to tell the captivated audience how she survived a gruesome accident involving the van she was traveling in and a train in Germany 41 years ago.

If you can do it, I can do it.

Linda and her husband were just out of medical school when they traveled to Germany on vacation. Their van was hit by a train, causing the van to roll over, shattering their lives and Linda’s body. Her injur ies were so severe that the doctors needed to amputate both legs above the knees and her right arm. In addition, she had fractures in her spine. When she finally saw her husband, who had a broken ankle, she said to him that she would understand if he left. He responded “I didn’t marry your arms or your legs. If you can do it, I can do it.”

Life as a triple amputee cannot be easy. But Linda was determined to do everything. While in rehab, she prioritized what she wanted to do in life. Highest on her list: being able to do the activities of daily living, driving , use artificial legs to walk and go back to work.

Work was the easiest. Her career as a radiologist took off because it only required her to sit and read scans on the computer, something that she could do easily. She knew she could go back to that.

In the years to come she did learn to walk with prostheses, had two children and traveled the world with her family, including being carried in a custom made backpack on her husband Dave’s back when on camping trips. As she said, it didn’t take long to figure out that fake legs were useless in the wilderness. She was pulled on dog-sleds, by horses and even in a wheelbarrow. Canoeing and Kayaking were things she could actually participate in. But specially made skis attached to fake legs did not work at all.

Five years ago, her life took another u-turn. She started having anxiety attacks, restlessness, difficulty writing. Within a few weeks, she was diagnosed with Parkinson’s Disease. Exercise was difficult, but she worked with a trainer and eventually learned to do things like one-armed push-ups, cardio exercises and more. She attended the WPC in Portland because she wanted to learn about living with PD. She ended up being on a panel discussion for the newly diagnosed, which led to her keynote address at the WPC Opening in Kyoto.

Accept, Adapt, Innovate

What got her through all of this was her attitude. And of course, her infectious smile. Her key message is to “Accept, Adapt and Innovate.” If you can get enough people to help you, you have enough determination and are willing to do things a little differently, you can get there. The hardest thing we have to do is to accept that our condition that it is real, then you can adapt and find new ways to do things- to innovate.

She brought us on her journey with her, not for pity, but to celebrate the good things in life, even as a person with Parkinson’s who just happens to be a triple amputee.

Because I cannot do justice to her story, I encourage you to watch the video recording here.

And you can now read her study in her newly published book Gone, A Memoir of Love, Body, and Taking Back my Life

Kinetics: The Desire to Move

Sunday morning, at a Zoom meeting for Twitchy Women, I had the privilege of hosting Sue Wylie, writer, producer and actor of the wonderful film about Parkinson’s Disease Kinetics: the desire to move….

In just 50 minutes, Sue takes us from first symptoms to diagnosis, meeting a troubled student at the school where she teaches drama, learning about his love of Parkour (an extreme running sport), which he uses to cope with his ADHD, to their growing friendship and respect for each other’s disabilities.

Accept, Adapt and Adjust

It is a remarkable film because of the honesty Sue presents us with about living with Parkinson’s Disease. She is afraid to tell others about her diagnosis. She shows her increasing difficulties at work and home and how it affects her relationships with others. A chance meeting with another patient at the Neurologist’s office gave her hope. He left her with the most memorable line in the film: “Accept, Adapt and Adjust.” It was beautifully done and left us wanting for more.

Last March I started an online group titled Sunday Mornings with Twitchy Women, which grew out of the need for women with Parkinson’s to be able to get together somehow after the start of the Stay at Home restrictions to combat COVID-19. Starting with 9 women, we now average 40-50 at each meeting, with women from the US, Canada, UK and beyond. Kinetic was suggested by one of the participants who connected me to Sue Wylie. I had seen the film at the World Parkinson Congress in Kyoto last year, and I agreed with her that it would be great for this group. Sue was thrilled to be able to speak to our group.

“I saw myself in this film”

And the group was thrilled to speak to her. We could all relate to what Sue brought to the film and the issues that were raised. Here are some of the comments that were emailed to Sue:

“I saw myself in this film.  I was diagnosed last September.  It’s still mild; the twitch is in my hand (the cat loves my messages!)  I spent a long time not telling anyone other than immediate family while I processed what was happening to me.”

“She expresses so many feelings that I have about my Parkinson’s’ diagnosis which I have not been able to express.  As I sit here, deep in a depression probably fueled by the pandemic, the isolation and my history of depression, I have experienced the release of tears for which I thank Sue. I have wanted to skip over “acceptance” and adaptation and adjustment in a rush to have a positive attitude.  The film is  elegant in its simplicity and straightforwardness and its honesty.  It speaks to the heart and mine expands to hers.” 

“I am hugely impressed with your very much on-target film, and the creative way you presented Parkinsons for us. I just sent a link to my family asking them to please watch it. This is something I’ve never done before. I have a tendency to want to protect my adult children from the realities of Parkinson’s, but they need to know. Your storytelling captures not just the facts, but the emotional truths as well. Thank you!”

“You have touched many lives with the honesty you show in your story. “

An interesting thing happened after Sue finished her presentation. It brought up so many feelings that the women started talking to each other about many other things, such as how often they speak to their children about Parkinson’s. Are their children even interested? How do we acccept? And, did Sue ever jump???? (you have to watch the film to understand that) Most importantly, after 4 months of getting together through Zoom, we were friends, having a good conversation together. We are looking forward to sharing many more Sundays together.

Kinetics will still be available to watch for free online for a few more weeks.

Don’t miss it.

Watch the full film directly here (50 minutes long): 
Kinetics: The Desire to Move. FULL MOVIE  (available for a limited time)

You can watch the trailer:
https://www.youtube.com/watch?v=R8tIp409QBM 

And learn more about it on our website: 
https://www.kineticsfilm.com

What helps you to live well with Parkinson’s Disease?

You must do the things you think you cannot do. – Eleanor Roosevelt

Since March is Women’s History Month, I will be including some quotes from some amazing women who have made a difference.  Look for more scattered throughout the blog posts this month.

And speaking of women,  I submitted an abstract to the World Parkinson’s Congress about a survey that I posted on a women’s Parkinson’s Disease Facebook group.  My abstract was accepted and I will be showing the results on a poster in the Poster Display  during the conference.

As a blogger who writes about living well with Parkinson’s, and having been a co-lead on the Parkinson’s Foundation’s groundbreaking study on women with PD last year, Women & PD TALK*, I was curious about what other women with Parkinson’s think contributes to their continuing to live well with Parkinson’s.

I asked the following questions  in November, 2018.

Please list the top 3 things that help YOU to live well with Parkinson’s. Then the flip side – the top 3 things that are obstacles for you:
For example:
Positive: Exercise, Advocating for myself with my doctors, Friendships with other women with PD.
Negative: Poor sleep, Tremor gets in the way of doing things, Daytime fatigue

I now want to open the survey to anyone who is interested in participating.  The difference is that this time I am asking you to choose 3 things from the list of the most common responses that I received last time.  And of course, there will be room for additional comments at the end.

This survey will self destruct, in about 10 days so that I will have time to look at the results and write a summary and create a poster for the WPC which starts on June 4.  Being the Parkie that I am, I need the pressure to get this done.   So please respond quickly so that I don’t have to scramble like Cinderella to get to the ball!

Be kind, have courage and always believe in a little magic.
― Cinderella

And the survey says……..click here to participate

 

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  • Watch for the Women & PD TALK outcomes here in the next few weeks!

Looking back at 2017 and forward to 2018

Your success and happiness lies in you. Resolve to keep happy, and your joy and you shall form an invincible host against difficulties. Helen Keller

It’s that time of year again, when we look back to see what we have accomplished, and look forward to the challenges and opportunities of the year ahead.

First, I want to thank all of you, the readers of this blog, for following me this past year.  It has been an adventure for me.   I hope that we will continue this dialogue for many years to come.

It has been 9 years since my double diagnosis of Parkinson’s and Breast Cancer.  Hard to believe that it has been that long.  I am doing quite well, with my symptoms mostly relieved by medication and exercise.  Of course there are ups and downs, especially while living with Parkinson’s.  But for the most part, nothing holds me back.  Mr. Twitchy and I have been traveling extensively, and plan to continue going places near and far, as long as we can.

Some of the highlights of our past year:

  1. The best part:  The continued growth of this blog has been a blessing beyound description.  The ability to connect with so many, to share information — and inspiration — with each other, to confirm that we are not alone and that we are, in fact a community, has brought joy and meaning that is difficult to put into words.  Let’s continue to read and comment  and inform each other; and it would be a thrill to meet any (and maybe many) of you at the Kyoto World Parkinson’s Congress in 2019.
  2. The most curious part:  The post with the most views in 2017 was actually from 2016; “Breast Cancer vs Parkinsons” discussed how the diagnoses are seen so differently, with the former being “acceptable” and the latter something to keep hidden.  The dichotomy seemed to resonate with a lot of people.  Sex and the PD Woman came in a pretty distant sixth place.  Not sure what that means.  (Maybe an update with pictures in 2018?)
  3. The most humbling part:  Being named one of Stanford Medicine’s Favorite Parkinson’s Blogs, one of Feedspot’s 50 top Parkinson’s bloggers (there are a lot of great bloggers on both lists, including many of the bloggers that I have been following since long before I began writing this blog) and being chosen as an official blogger for the 2019 World Parkinson Congress.
  4. The most exciting part:  Working with the Parkinson’s Foundation to create the study Women & PD TALK,  which grew out of the Women & Parkinson’s Initiative two years ago.   Led by the Parkinson’s Foundation and funded through the Patient-Centered Outcomes Research Institute (PCORI),  Women and PD TALK is the country’s first national effort to address long-standing gender disparities in Parkinson’s research and care based on the recognition that the disease affects the sexes in different ways.  Its goal is to develop new patient-centered recommendations to improve the health of women living with Parkinson’s.  It has  been a pleasure to work with Allison Willis, M.D., University of Pennsylvania and Megan Feeney, MPH, Parkinson’s Foundation, two true luminaries in the Parkinsons world. We have been privileged to work with teams of Patient Leaders and Health Care professionals who are planning forums in 10 different locations.  The first forum was in San Francisco in December and offered an exciting start that exceeded our expectations.

Some exciting prospects for 2018:

  1. The Women & PD Talk Forum in Los Angeles, on January 27, which I am honored to co-chair with Adrienne Keener, M.D. and Ali Elder, PT.   This will be the 3rd of the 10 forums being held around the US.
  2. The anticipated report and recommendations from Women & PD TALK  for improving care and outcome for Women with PD.
  3. Working with the World Parkinson Coalition to get ready for Kyoto in 2019
  4. Watching for, and sharing with you, the latest news on PD .  We seem to be inching closer to finding the root causes of Parkinson’s and possible treatments to reverse the damage.  Will this be the year for the big breakthrough?
  5. Oh, and we are expecting our 4th grandchild in May.  So there’s that, too.happy-new-year-2018-animation-fireworks-6062126467.gif

Much Ado about Parkinson’s

As we celebrate the 200th anniversary of Dr. James Parkinson’s groundbreaking essay of “The Shaking Palsy”, there seems to be a flurry of announcements of possible breakthroughs in diagnosis and treatment of Parkinson’s.  Eight years ago, when I was first diagnosed with Parkinson’s, the prevailing theories all stated that PD was a disease that started with “dopamine-producing cell death in the brain.”  Sometimes the cause was genetic.  Other times exposure to pesticides or other chemicals were to blame.  But most of the time, there was no apparent cause.  Just 6 months ago, at the World Parkinson’s Congress, we began to hear about  different ways of looking at PD.

We have known for years, that Parkinson’s is a designer disease.  The progression can be very different for each person.  But now doctors and researchers are looking at PD as a group of syndromes, not just a single neurological condition that caused movement disorders.   Many other symptoms and diseases not typically considered Parkinson’s were now seen as part of PD.    There have been a lot of studies of possible treatments that seemed promising, but the hope for a cure still seemed elusive.  In fact, one of the speakers at the WPC, whom I believe was Tom Isaacs, quipped that the cure was always 5 years away, no matter what the research said.

But something has changed since then.  In the last few months, researchers are coming out with reports that Parkinson’s does not start in the brain, but may actually start in the gut.  Many say the culprit in some cases may be microbiomes in the gut. WOW!  If this is true, scientists at Caltech say it may mean that PD can be detected much earlier and drug treatments can be designed to remove those nasty little bacteria that are causing problems in our gut and our brain.  This treatment may also be more effective because medications

271-smts-gutbrain-connection-news-web
Credit:  Caltech

can easily be absorbed in the gut, unlike treatments for the brain, which is protected by the blood brain barrier.  There has been much written about this, and it is probably confusing for most of us who are not researchers.   I am not a biologist, or a scientist, but I do understand that treating the cause much earlier, if it is in fact in the gut, is much easier that treating the damaged neurons in the brain, especially since symptoms don’t appear until it is way too late to reverse the damage.

Here is a quick look at some of the other announcements over the last few weeks:

  • Biomarkers  can be used to used to define disease subtypes.  “This precision-medicine approach will likely yield smaller, but well-defined, subsets of [Parkinson’s disease] amenable to successful neuroprotection.” according to Alberto Espay, MD, who conducted a study titled “Precision Medicine For Disease Modification In Parkinson Disease.
  • Last week the FDA approved Xadago   (Safinamide) for people with Parkinson’s disease (PD) who are taking levodopa but experiencing “off” episodes.
  •  Also last week, researchers from the University of New Brunswick    found that an extract from the brown seaweed Alaria esculenta can prevent this conversion and, therefore, could be useful in avoiding the onset of the disease or delaying its progress.”  Ok.  Does this mean we should eat more sushi?
  • A new study published in the Annals of Neurology suggests that redheads may carry a gene variant that increases the risk of both Parkinson’s disease (PD) and melanoma. Researchers have long known that having either PD or melanoma heightens the chances of developing the other condition, but it’s been unclear exactly why.  What if you are blonde and have had both, like I have???  I think this means I am in trouble….
  • The Food and Drug Administration finally gave approval for 23andMe to sell to consumers genetic tests and their accompanying health risk reports for up to 10 diseases, including late-onset Alzheimer’s and Parkinson’s.
  • And finally, the New York Times declared that exercise is good for us old people.

All kidding aside, it seems that the big breakthrough may just come in less than 5 years, which would make all of us very happy.