by The Parkinson Alliance | Apr 21, 2016 | Exercise & PD
In our last post, guest blogger John Cornicello talked about exercising at the School of Acrobatics and New Circus Arts to help combat his Parkinson’s and get in better shape. While not as exotic as a circus school, in early March I added another type of exercise to my program. It’s called “Redcord” and is taught at Activcore in Princeton, NJ (although they have other facilities in central NJ and in Denver, Co). Redcord uses a patented “bungee assisted” system of cords and slings that fully supports my weight throughout each of the movements my therapist directs me to do. After clearing it with my movement disorder specialist, I decided to give it a try.
When I first arrived, a physical therapist evaluated me and found I have problems with mobility (walking and moving around), pain in my left shoulder (unrelated to my PD), decreased standing tolerance, generalized body weakness, and I continue to use my walker. However, my rehab potential is classified as “good,” and I started the program. My plan is attending three times a week, and I’ve thus far made it through 15 visits.
This system allows me to perform many of the same suspension exercises as an athlete. Granted, the amount of bungee assistance will vary, but it’s still exciting for me to do this work.
Marge and her trainer, Tyler.
Marge developing her core muscles
It is especially important for people with Parkinson’s to exercise, and this training is very exciting for me. We will be updating Marge’s progress on this training. Check back for updates.
Meanwhile, what type of new exercises are you incorporating into your routine? We’d love to hear from you!
– Margaret Tuchman and Gloria Hansen, The Parkinson Alliance
by The Parkinson Alliance | Apr 12, 2016 | Exercise & PD, Inspirational
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.
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.
All of this has built good core strength and improved my confidence.
So next came juggling. I’ve never been able to juggle. Maybe it is from lack of discipline and practice.
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.
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
by The Parkinson Alliance | Mar 29, 2016 | Cognition
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.
