“Running Away to Join the Circus” – and dealing with Parkinson’s

by guest blogger John Cornicello, a Seattle-based portrait photographer Cornicello Photography and a person with Parkinson’s

It all started a few years ago. I was working for a well-known software company. My job had me at a computer, typing, most of the day. I started noticing some “issues.” My left hand was becoming less accurate — DOuble-caps, repeating letters, things like that. I also noticed that my left arm was pulling in towards my body when at rest and it didn’t move/swing as I walked. My piano playing had been actually getting better for a few years, then all of a sudden it started a dive, too.

My first thought was that I suffered some sort of mild stroke. I got a referral to a neurologist, had an MRI, and things looked good. He had me do some basic movements. Then, as he observed me, he suggested that I might have Parkinson’s. I had no tremors. Just the stiff left arm and some cogwheel type of movement in my left wrist.

I had already been taking Ropinerole for restless leg, so we didn’t change anything there. My diet has never been that great, so my wife and I tried to go radical (for me) for a few months with no sugar, carbs, or gluten. I did lose about 20 lbs very quickly. However, I was starting to get some tremors in my left hand. After three months, I went back to dairy and gluten but have managed to keep away from sugared soft drinks.

Concurrently with all of this I had been photographing for a circus school here in Seattle. SANCA is the School of Acrobatics and New Circus Arts, one of the largest such schools in the world. I became friends with the owners and at the end of a benefit show in February 2015 I casually mentioned that I had Parkinson’s and asked Jo Montgomery if she had ever worked with Parkinson’s patients. She said she had not, but that I should stop in at the school next Monday. And I’ve been there just about every Monday, since.

I was 57 and pretty sedentary when I started this. Jo started me up slowly with stretching exercises. And then gradually started asking me to try more activities. My initial reaction to most of these has been, “You want me to do what? OK, I can bounce on a trampoline and do some jumping jack type of movements, But now you want me to do a seat drop? And then come back to a standing position?” I dreaded the trampoline for about 2 weeks.

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Then it clicked and has become a favorite part of our routine. Next came walking on a balance beam. About 3″ wide and 6″ off the ground. More difficult than expected, but not so bad. I could do that one. Until one day she suggested a tight wire instead. A steel cable about 1/2″ or so wide. Barefoot, Jo would be holding one wrist as I walked back and forth across the wire. I never measured it, but I’m guessing it is a 12 foot distance. Amazingly I did it. And I enjoyed it.

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All of this has built good core strength and improved my confidence.

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So next came juggling. I’ve never been able to juggle. Maybe it is from lack of discipline and practice.

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But I try. Balls, clubs, rings. On my own, I’m really bad. But I found that I can toss 2, 3, or even 5 rings with another person. I believe this routine is helping to make new brain connections that might help with Parkinson’s.
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Then back to stretching. When I first started I couldn’t move my left shoulder. I would hold my left arm out to the side and grab a bar and tell it to move up/down and forward/back. And nothing would happen. I could tell my right shoulder to make all sorts of movements and it would. But the left shoulder would just sit there, completely ignoring my commands. I don’t know if is the medications (I started seeing a movement specialist in June 2015, and started Carbo/Leva in September), or all the other exercises, or a combination, but my left shoulder is finally starting to follow instructions and move around in circles when I want it to.

We also do some strength training by doing pull-ups on a trapeze bar and an exercise where I grab a bar above my head against a wall and pull my knees up to my chest 20 times.

Outside of circus school I have set up my home “triathlon” routine where I do a 30 minute routine that consists of a mile on a treadmill, then spin at 80-90 pedal rpm on a stationary bicycle for the balance of the 30 minutes. Then I take a shower.

All of this has helped me maintain a healthy and positive attitude. I consider myself lucky that my tremors are mostly mild and confined to my left hand so they don’t affect my photography. Yes, I’ve started using a tripod more often, but not all the time. I do worry that my left hand tremor might be a distraction to my subjects if my hand starts banging against my tripod. But I do explain the situation if that happens and all seems good.

This past week I found out that one of the members of SANCA’s board of directors has been diagnosed with Parkinson’s and she has joined in on the Monday class. Our first try at juggling rings with each other went remarkably well.

Some days I wonder if I should be more concerned with my Parkinson’s. But so far I have managed to maintain a very upbeat attitude. I really look forward to both the SANCA and the home workouts. And I am somewhat amazed as I learn about more and more friends and colleagues who have some sort of tremors, be they essential tremors or Parkinson’s. This makes me have hope that more people will be learning about these issues leading to more research and the possibility of cures and even prevention. In the meantime, I am now starting to think about boxing lessons with a program like Rock Steady Boxing.

Thank you, John, for sharing your story with my assistant and blogging partner, Gloria Hansen. You are very creative and we applaud your unconventional approach to exercise, which we know is the best medicine for Parkinson’s. — Margaret Tuchman, President of  The Parkinson Alliance

Cognition: A prominent non-motor symptom in Parkinson’s disease

by Jeffrey Wertheimer, Ph.D., ABPP-CN, our Chief Consultant and Chief of Neuropsychology Services at Cedars-Sinai Medical Center, LA, CA.

Cognitive changes can impact people’s everyday lives as much, and sometimes more than, the physical symptoms of PD.  While discussing this topic with Margaret Tuchman, our next survey topic was developed.  The Cognition and Parkinson’s Disease survey is now available at our DBS4PD.org website. The objective of this survey is to deepen our understanding about the perspective of individuals with PD pertaining to cognition and its relationship to day-to-day activities. Anyone diagnosed with Parkinson’s should take this survey by clicking here.

Cognition includes the ability to choose, understand, remember, and use information. More specifically, cognitive functions involve:

  • Attention and concentration
  • Speed of processing
  • Processing and understanding information
  • Initiating, planning, organizing, dual tasking, and sequencing
  • Reasoning, problem-solving, decision-making, and judgment
  • Controlling impulses and desires and being patient and calm
  • Memory
  • Communication (i.e., expression and comprehension)
  • Visuospatial processing – (perception of the spatial relationships among objects within the field of vision; visual scanning)

Although cognitive difficulties in individuals with PD can vary in pattern, affecting to a greater or lesser extent different domains of cognition, a typical pattern for individuals with PD involves reduced processing speed, executive dysfunction (difficulties with initiation and managing complex information), difficulties with attention (i.e., working memory), memory, and complex visual scanning/visuospatial processing.  Cognitive impairment in PD also varies in severity. Although cognitive impairment in PD exists on a continuum of severity, it is often divided into two categories (albeit an oversimplification): Mild cognitive impairment and PD dementia, based on the extent to which the impairment interferes with activities of daily living. Mild cognitive impairment refers to cognitive decline that does not significantly interfere with activities of daily living, social engagements, or occupational functioning. In contrast, “PD dementia” involves cognitive impairment in 2 or more cognitive domains that result in interference with daily function (separate from motor disturbance that interferes with independent performance in activities of daily living).

Cognitive difficulties may be present from the early stages of PD, and in most cases, cognitive difficulties get worse over time. While physicians are increasingly recognizing the importance of addressing cognitive and other non-motor symptoms, many still primarily focus on treating the motor symptoms of PD.  Cognitive changes may go under-assessed and undertreated or even untreated, despite its high prevalence.

Cognitive changes in PD can be attributable to multiple causes. Indeed, PD itself can cause changes in cognitive processing. Importantly, however, cognition can be impacted by medication effects (dopaminergic medications related to “on” vs “off” states; non-PD medications), sleep disturbance/fatigue, psychological distress (i.e., depression and anxiety), and pain.  It is very important that treatment providers understand how to address factors that impact cognition, and even prevent and directly treat cognitive difficulties.  It is equally important that people with PD and their families understand what types of changes to look for in order to communicate concerns to their treatment providers.  Cognitive difficulties can be addressed by an interdisciplinary treatment team, such as a neurologist, neuropsychologist, speech therapist, and occupational therapist. Increased awareness and treatment of cognitive difficulties can lead to improved quality of life for people with PD and their families.

In order to facilitate treatment, assessment of cognition is crucial. Mode of onset and the course of symptoms, the context within which they develop, as well as the presence of co-existing medical illnesses and possible medication effects that can contribute to cognitive difficulties should be assessed and guide the approach to intervention. As for intervention, a thoughtful approach tailored to the individual is indicated. In some cases, treatment may not be necessary. In others, behavioral intervention (i.e., scientifically proven approaches to cognitive rehabilitation; addressing psychological factors) may be the primary intervention, while in other scenarios, behavioral intervention coupled with pharmacological intervention (medication changes or medications intended to treat cognition) may be beneficial.

Again, anyone diagnosed with Parkinson’s should take our survey on cognition by clicking here.  The information you provide will benefit individuals with PD and caregivers as well as treatment providers so that they can better help you. Please know that all information you provide will be kept strictly confidential.

For People With Parkinson’s: Some Hope and Gratitude

By Margaret Tuchman, President of The Parkinson Alliance and a person with Parkinson’s disease formally diagnosed over 35 years ago.

I am a regular watcher of TED, a platform for sharing ideas and sparking conversation. Recently I watched two talks that left me hopeful and grateful.

The first is from Jocelyn Bloch, a “functional neurosurgeon” who works to improve neurological function through different surgical strategies. Her talk is entitled, “The brain may be able to repair itself — with help.”  When I started watching, I was surprised to hear her mention deep brain stimulation and how it has improved neurological function and thus the destiny of people with Parkinson’s. Her dream, however, is to go beyond the neuromodulation that DBS offers and into the realm of neuro-repair.  Her journey started some 15 years ago when she worked in an emergency room as a chief resident and treated patients with severe head trauma.  It was from that experience that she and a colleague began experimenting with cells from pieces of brains. These experiments are proving that, with a little help, it just may be possible for the brain to one day repair itself.  It’s a fascinating under twelve minute talk that I encourage you to view.

The second is from monk and interfaith scholar David Steindle-Rast.  His talk entitled, “Want to be happy? Be grateful,” suggests that happiness is born from gratitude.  He tells us that the most valuable thing we are given is this moment, and that every moment is a new gift, and we get this gift over and over again.  He gently encourages us to remember what we were told as children: Stop. Look. Go. By slowing down, looking, and understanding where you are are, he describes how we can learn to find gratitude in the ordinary and from that gratitude a sense of happiness in the now.
As a person with Parkinson’s, I found this 15 minute talk an excellent pick-me-up.
You can view it below.

What TED talks have you enjoyed?  I look forward to hearing from you.

Parkinson’s & Nutrition

By Margaret Tuchman, President of The Parkinson Alliance and a person with Parkinson’s who also had DBS surgery.

Nutrition-Cover

We recently asked persons with Parkinson’s (PWP) to take our survey entitled, Nutrition in Parkinson’s Disease: A Closer Look from the Patient’s Perspective.  Our goal was to find out what PWP think about how nutrition affects their PD and what, if anything, they do about their daily nutrition. Nearly 1,500 PWP participated in the survey and many also submitted comments. The survey report is now available, and it clearly shows that the vast majority of PWP believe that diet and nutrition are important in managing their PD symptoms.

“My husband has eaten healthy all of his adult life. I think it makes a real difference in the slow progression of his PD. … Doctors need to refer PD patients to Registered Dietitians as soon as they are diagnosed and have regular check-ins every year or so. Screening for malnutrition and medication interactions is especially important. Registered Dietitians are very underutilized in the care of people with PD.”

Interesting to note, however, is that almost half of the survey participants perceive themselves as not eating healthy most of the time.  Additionally, very few PWP have been educated about nutrition or recommended to follow a specific diet.  One participant commented, “I desperately need help with my daily meals. I went to a nutritionist who gave me general recommendations; i.e., eat more fish, nuts. … But I need some simple, practical, and everyday recommendations.”  While I responded directly to this individual, I also want to share that information here.  Kathryn Holden, MS, RD, is a Gerontological Nutritionist and Registered Dietitian who also helped design our survey and review our manuscript.  She wrote a book called Nutrition Matters. The 72 page book is available as a free download from the National Parkinson Foundation website here. It includes recipes, like blackberry peach cooler and skillet breakfast solo, suggested meal and snack plans, and other very useful information.

The survey also addresses vitamins and supplements. For example, our survey reports that taking the spice turmeric and drinking tonic water can help to ease muscle cramping. Another participant told us that her doctor attributed her pain and frequent falls to her Parkinson’s. However, because she was persistent in asking questions and had more testing, she eventually learned that she had low potassium and vitamin B levels.  She wrote, “Since addressing that with supplements, my life changed. … Supplements made a difference.”

While not every PWP believes a nutritious diet will have any affect on PD, the evidence and comments we received state otherwise. “When I eat healthy, I feel so much better and my symptoms are so much better.”

There is a bidirectional relationship between nutrition in Parkinson’s. Nutrition can impact the metabolism of medications used to treat PD, and PD symptoms and/or medications can impact your nutrition and dietary habits. Our survey report provides information on how to get a holistic and united approach to addressing your individual nutritional needs as it relates to your Parkinson’s. I encourage you to download and read it. Talk to your doctors and caregivers about this matter.  While good nutrition cannot cure PD, it can help towards a better quality of life.

Download the free PDF from our DBS4PD.org website here.

Team Parkinson’s Race Weekend at the 2016 Skechers Performance Los Angeles Marathon & Big 5K

By Edna Ball, Team Parkinson

Team Parkinson had a great time on race weekend! We started with the traditional setting up of our booth at the Los Angeles Convention Center on Thursday afternoon. Now we were ready to go!

Booth

The Expo opened on Friday morning and we eagerly greeted our participants who came by the booth to pick up their TP t-shirts. We also had the pleasure of having our booth sponsors, join us as well.

5K

Early on Saturday morning we headed to Dodger Stadium for our participation in the LA Big 5K. TP fielded a team of over 70 runners and walkers, all smiles in their beautiful blue TP t-shirts. It was a gorgeous, sunny day and all our starters finished as well. Special kudos go to Phil Miller, Eddie Schindler, John MacDougal and Debbie Jew for walking over the finish line upright and proud. And congratulations to all our 5K participants from Sarah’s 5K Training Team and our START support group. Thank you Sarah Ingersoll and Steve Mackel for leading the troops again! It’s so inspiring to see so many who are living with Parkinson’s disease (PD), work so hard to stay fit and thereby improve the quality of their lives. Wear your medals with great pride!

Dinner

On Saturday evening we hosted our traditional carbo loading dinner at Taix French Restaurant. Over 80 people enjoyed an inspiring evening of speakers and camaraderie. Carol Walton made the initial introductions. Dr. Gal Bitan gave us a very hope filled update on his research that Team Parkinson is helping to fund. Dr. Jeffrey Wertheimer and Didi Matthews gave an excellent presentation on all the positive things one can do both physically and mentally to improve one’s quality of life with PD. Much of their advice focused on community, and this group at dinner was a glowing example of how involvement in community is so beneficial. John Ball spoke about all the support we get every day from those in our lives and thanked his personal ‘team’ that keep him going. Edna Ball thanked those who worked so hard for this event to come off without a hitch, including Susan Saxonberg, our dinner coordinator and Lee Stacy of Norm Reeves Honda for sponsoring the evening. Carol Walton reminded everyone to please read up on the latest research we fund by checking the Parkinson Alliance website. And lastly Steve Mackel gave some advice to Sunday’s marathoners and relay runners about running in the heat that was expected. It was a great evening!

Marathon

Sunday morning saw the runners meet bright and early at Dodger Stadium or at the transition zone for the 2nd-leg relay runners. Although the course was hot in some parts, for the most part it was cooler than predicted and at the finish line in Santa Monica it was foggy and chilly. We set up our cheering area at Ocean and Alta but didn’t need the sun canopy at all. It was thrilling to see the elite runners whiz by as we waited for our own heroes. And it was exciting and gratifying to see our own approach the finish line as well.

And so we wrap up another year as an official charity of the marathon. So far we’ve raised over $67,000 and counting. This campaign will stay open until March 31st, so please continue to fundraise. Take a selfie of you and your medal and let everyone know what a great accomplishment this is. When you post on social media, remember to include @teamp4acure on twitter and Instagram.

There are too many people to thank individually for the success of the weekend. We do however want to single out Carol Walton and Terri Hamran of The Parkinson Alliance and Nessa Weinman as well for putting the long hours at the Expo.

Please continue to check our website at www.team-parkinson.org for the most up-to-date total number of donations. And please continue to spread the message of our mission to raise awareness of PD, to improve the quality of life of those living with PD through exercise and to raise funds for research!

All photos from our race weekend are now on our Shutterfly site, where you can download and print them. Check out photos from the 5K race, our Carbo Dinner, and Marathon day. Thanks again to everyone for sending us your snapshots!

Thanks for all your continued support!

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