Month: February 2016

Parkinson's Disease, Parkinson's exercise, Research, USF

South Tampa YMCA on the PD Move and a Fine Haus(er) Party

gthelen

South Tampa Y Explores PD Exercise Expansion

The South Tampa Family YMCA is sprinting towards creation of a second exercise program for people with Parkinson’s. The Y’s strong start with its cycling program has encouraged key leaders to explore more exercise programs aimed at PD.

The South Tampa Y’s stationary cycling program has exploded from 6 to 20 members in just over two months. Participant reviews are very strong and many expressed interest in additional new programs, such as the Rock Steady Boxing program in Largo. Current Hillsborough exercise programs aimed at PWP include yoga, tai chi, the Jewish Community Center’s new program and LSVT Big.

Y leaders Melissa Brockman and Nancy Belli have become enthusiasts for strenuous exercise programs for Parkies. They are urging other local YMCAs to start cycling programs. They are also talking with physical therapist Jason Kimber about the vigorous exercise program for PD that he designed. Kimber, who has relocated from South Florida to Tampa, wrote a guest blog on Shufflingeditor on February 2. Kimber has developed a program that includes elements similar to Rock Steady. Kimber’s program includes rigorous, whole body movement exercise that utilizes components of boxing, yoga, balance and strength training, as well as stretching. “Those take your body through atypical movement patterns that can help to retrain the brain,” he wrote.

Y leaders are looking for innovative program ideas. Kimber’s certainly appears to qualify. An added plus is the Y can bring it to market faster than a Rock Steady program.

USF’s Haus(er) Party

Dr. Robert Hauser and his staff at the USF Health Byrd Parkinson’s disease and movement disorders center threw one fine house party last Saturday for more than 200 persons with an interest in PD.

The day’s activities included presentations on DBS surgery, speech and language therapy, legal issues, and a physical therapy program known as LST Big.

The speakers covered ground familiar to readers of this blog. But I was intrigued with comments from Dr. Fernando Vale, a USF neurosurgeon. Among them:

• Still active USF surgeon Don Smith did the first DBS operation in the U.S. in 1993.
• 150,000 implants have been done since then.
• The 7-10 year surgery window. After an initial diagnosis it s deemed the sweet spot for DBS.
• Vale said the surgery “makes your life better but not ideal.”
• The surgery results in a reduction and the need for medications such as carbidopa-levodopa.
• There is “only a small chance that early surgery will delay progression of the disease.”
• Vail cities the next surgical step being about how to “repair damage and regenerate neurons.”

The lawyer who spoke, Jack M Rosenkranz was especially impressive about the legal safeguards Parkies should put in place. If you haven’t taken care of the estate planning guardianship and other issues, Rosenkranz would be a good one to consult.

Hauser closed the show with a wide-ranging review of current research efforts, his forte. As always, he urged his audience to volunteer in research projects.

While at heart a researcher, Hauser has been an important and public proponent of patient care initiatives and reforms.

Hauser was an early proponent and financial supporter of the Rock Steady Boxing program. He teamed with the Jewish Community center here to start their new exercise and caregiver program. He has supported my idea of a local helpline for Parkies.

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Parkinson's Disease, Parkinson's exercise, USF

USF PD Seminar Saturday, plus Exercise and Apathy

gthelen

Interesting exercise program

My Rotary and PWP partner Jerry Iwerks brought an interesting exercise program to my attention courtesy of John Alexander, a Davis Phinney Foundation ambassador. The two spoke at the Fox Foundation event in Tampa Feb. 6.

Here’s what Alexander said in a follow-up email to Iwerks (the videos referenced are quite well done):

“The class that I have been participating in recently is called PWR, which is an acronym for Parkinson Wellness Recovery. The program began in Tucson, AZ at a neurofitness center specializing in early intervention and ongoing access to research-based therapy and fitness programming for individuals with PD.

“Florida Hospital in Central Florida became aware of the program and they scheduled a session to train an initial group of Physical Therapists to lead classes just about a year ago. A team of instructors came to Orlando last year…

“The following link shows a video describing the basic moves in the program. http://www.pwr4life.org/moves/approach/

“In addition to watching the primary video on this page, scroll down and click on any other hyperlink to a word in blue and you’ll get a good visual demonstration of the various components of the program. For example, here is a video of the Standing moves – https://www.youtube.com/watch?v=Y6Wtd13lwrc and here is one of the Sitting moves, https://www.youtube.com/watch?v=TDBVDCkkxV0

Reminder about USF PD Seminar Saturday

USF Parkinson’s Disease Educational Symposium ‪from 9 a.m. to 3 p.m. at the USF College of Public Health, ‪13201 Bruce B. Downs Blvd., Tampa. Free lunch provided. To get more information and to
Register by email; contact Jennifer Baker at jrbaker2@health.usf.edu.
My wife and I attended last year, and it was quite worthwhile.

Apathy and PD

I was enlightened by this interesting take on apathy in PDF by Dr.
Rachel Dolhun of the Fox Foundation.

“This time of year everyone and everything seems to be focused on exercise as part of a New Year’s resolution. It can be hard for anyone to get and stay motivated, but what if it seems nearly impossible? What if you have no get-up-and-go, or you’re simply not interested? You may be experiencing apathy.
“Apathy Is a Non-motor Symptom of Parkinson’s disease
“Apathy causes a general lack of motivation and interest, as well as a dampening of emotional expression. Hobbies and social activities may no longer bring enjoyment, and daily routines may require more energy. Basic tasks may be difficult to start and complete.
“Apathy can be misinterpreted as laziness, poor initiative or depression. And while it oftentimes is a feature of depression, apathy may occur on its own in Parkinson’s.
“This symptom affects up to 40 percent of people with Parkinson’s disease (PD) and is likely due, at least in part, to lack of the neurotransmitter (brain chemical) dopamine. It can impact anyone at any time in the course of his or her disease, but those with depression, anxiety or impaired cognition (memory and/or thinking abilities) are more susceptible. Older age and more severe motor symptoms also seem to put people at higher risk of developing apathy.
“Apathy Has Many Potential Consequences
“Apathy can have wide-ranging effects. For the individual experiencing it, apathy may lead to less physical activity (which can worsen already impaired mobility) and fewer social interactions (which could lead to depressive symptoms). Apathy has also been shown to correlate with a poorer adherence to medication regimens and/or response to treatment (as after deep brain stimulation surgery, for example).
“The friends and family of someone with apathy are also impacted — relationships may be stressed as loved ones take on more caregiving efforts.

“Treatment of Apathy Focuses on Behavioral Adjustments
“People with apathy usually don’t realize there is a problem. Instead, friends and family notice behavior or personality changes and bring these to the doctor’s attention. It’s important to do so because the physician can do tests and have you fill out questionnaires to figure out if the symptoms are due to apathy, depression and/or another medical condition.
“If the diagnosis of apathy is confirmed, lifestyle adjustments may be recommended:
Maintain a regular sleep and wake schedule. Go to bed and get out of bed at the same time each day. If you snore loudly, act out your dreams, or feel excessively sleepy during the day, ask your doctor if you need a sleep evaluation.
Create a schedule that incorporates physical, social and cognitive (memory and thinking) activities. List what you will do each day and at what time.
Set personal goals. Start small, with objectives you are confident you can achieve. As you reach these, you will set and accomplish bigger goals. Involve others at every step of this process — this will strengthen existing bonds and build new relationships.
Exercise. Physical activity is probably the last thing you want to do when you’re tired and unmotivated. It sounds counterintuitive, but exercise is actually helpful for apathy. Listen to your body and know your limits (i.e., stop if you feel pain, don’t push yourself to the point of exhaustion, etc.) but try to do something active every day — a short walk around the block or, if you have poor balance, stretching exercises on the floor. You might even want to look into group exercise classes — many are offered specifically for people with Parkinson’s or older adults.
“Medication options to treat apathy are, unfortunately, limited. Increasing dopamine replacement therapies (dopamine agonists and/or levodopa) is beneficial in some people but, of course, must be done carefully. Other drugs, including those used for dementia (such as rivastigmine, or Exelon) and depression (namely if the person is depressed) can be helpful in individual cases. All medications work best in conjunction with the above behavioral adjustments.
“More Research Needed on Apathy
“Clinical trials to test therapies for apathy are difficult to design and complete mainly because apathy can be hard to separate from other conditions. Additionally, the diagnosis of apathy relies on patients reporting their own symptoms and doctors doing tests to rule out other diseases (i.e., there is no blood or other test to make a specific diagnosis of apathy).
“Clinical trials to date have shown that both dopamine agonists (such as rotigotine, or Neupro) and non-dopaminergic medications (like rasagiline, or Azilect) can be helpful in some people. Additionally, small studies of non-pharmacologic interventions — exercise, cognitive behavioral therapy and repetitive transcranial magnetic stimulation (which delivers magnetic pulses to specific areas of the brain) — have shown an improvement in apathy. Further research is needed, though, to gain a better understanding of apathy and develop better treatments to target it.

Parkinson's Disease, Support Groups

Fox FoundationThrows a Grand Tampa Bay Party

gthelen

The Michael J. Fox Foundation threw a grand party Saturday for Tampa Bay Area people with Parkinson’s. They spared no expense for the estimated 700 to 1,000 Parkies and their care partners who gathered at the downtown Tampa Hilton hotel.

Breakfast was everything you could ask for, and the box lunches were top drawer. They even provided parking vouchers worth up to $10 each.

The main and breakout sessions were informative an interesting, even if little information ground was broken. The gathering allowed attendees to interact with care providers in the area, ranging from USF research initiatives, new cycling programs at the South Tampa Y and the relatively recent and successful Rock Steady Boxing program in Largo. In the largest sense, the community of Parkies and their support organizations was established or at least reinforced.

The plenary and breakout sessions covered the familiar topics of how varied Parkinson disease symptoms are, how you find and interact with a movement disorders specialist, what research is in the works and the role and stresses for caregivers.

The all-day event had both funny and strange moments. Dr. Robert Hauser surveyed the vast audience with a wry smile and said what a wonderful gathering this was of future participants in his many research studies at the USF Byrd Center for Parkinson’s Disease and movement disorders. One patient panelist mentioned that because of her medications she sometimes found herself asleep while stopping at red lights. There was an audible gasp from audience members who were astonished that she was still driving

The messages were familiar ones. Get engaged. Get educated. Get involved. Don’t let the disease own you. You have to be your own best advocate.

The news for me involved the Fox program named Partners in Parkinson’s. I was unfamiliar with even its existence. Its goal is a worthy one: filling that gap after diagnosis with an effective support network.

Here’s how they describe themselves: “You are not alone; there are many sources of information and assistance to help you chart your own course for living well with Parkinson’s disease. Connecting Parkinson’s patients, families and caregivers with these resources is the goal of Partners in Parkinson’s. We encourage you to take advantage of the tools we offer, all of which you can access at your own pace from the comfort of home:

“A first- ever online tool to find a movement disorder specialist (created in collaboration with the International Parkinson and
Movement Disorder Society).
The opportunity to connect with an advocate by phone for one-on-one advice and support.

“An educational website with information about Parkinson’s disease, including a downloadable Parkinson’s disease guide.

“”Whether you are newly diagnosed, have been living with Parkinson’s for years or are caring for someone with Parkinson’s, we hope to help you discover the benefits of team.
To do to take advantage of all Partners in Parkinson’s resources visit http://www.partnersinparkinsons.org.”

The Parkinson’s disease advocate is described this way: The person has 1. Skills in educating you about Parkinson’s disease and progression. 2. Knowledge of educational resources for Parkinson’s disease. 3. Suggestions for helping you discuss your symptoms with your doctor.

The program sounds very promising. I intend to learn more about it and pass that along in a future post. One of my questions will be does a person have the same advocate throughout or is it a rotating group you will interact with? How do Advocates know what local resources and providers to recommend?

My larger question has to do with asking the person just diagnosed with Parkinson’s who is at a low ebb emotionally and educationally to have the the wherewithal to seek out the Advocates program. That aside, I am very impressed with the ambitiousness of this venture.

On behalf of those of us who attended, thank you Michael J. Fox Foundation for a very worthwhile day.

 

 

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Nice Take on new Tampa Bay Exercise Options

gthelen

Whether it’s cycling or boxing, vigorous exercise can ease Parkinson’s symptoms
Irene  Maher, Times Staff Writer

For years, doctors have been telling their patients that exercise helps with the symptoms of Parkinson’s disease, too, but now they’re getting some help from organized exercise programs designed specifically for Parkinson’s patients.

The classes are usually led by specially trained and certified instructors who have learned about the disease and how to work with those who have it.

Parkinson’s is a neurodegenerative brain disorder that slowly and progressively robs patients of control over their bodies. For reasons that are not fully understood, the brain stops producing dopamine, a chemical necessary to relay messages that control smooth, coordinated body movement.

It usually takes years to produce symptoms, and the earliest signs are often dismissed as tiredness, stress or simply aging. By that time, dopamine production is down 60 to 80 percent. After that it can take months or years to become disabling.

Nothing stops Parkinson’s from worsening. Eventually it causes movement problems such as slowness, stiffness, stooping posture, a feeling of being frozen in place, foot dragging and shorter, shuffling steps. Medications and certain surgical procedures may help. But exercise is almost always part of the prescribed treatment plan.

Now there’s some evidence that intense exercise — the kind that makes you breathe hard and sweat — may hold off worsening symptoms longer than anything else.

“A number of studies have looked at slowness, stiffness and tremor, and exercise has clearly demonstrated benefits lasting from hours to days,” said Dr. Robert Hauser, director of the USF Health Byrd Parkinson’s Disease and Movement Disorders Center. “The reason it helps isn’t entirely clear, but it might have to do with chemical changes that occur in the brain during high-intensity exercise — like a runner’s high. It may also be the increased blood flow to neurons in the brain during exercise.”

Whatever the mechanism, exercise seems to keep Parkinson’s patients active and able to manage activities of daily living longer, compared to those who don’t exercise. The more high-energy and challenging the activity, the more it seems to help.

Frank Marcia noticed a change in his wife, Linda, not long after they joined the Pedaling for Parkinson’s class at the South Tampa YMCA. Linda was diagnosed with Parkinson’s disease almost eight years ago. Since starting the class she has more energy, so she feels like doing more each day.

“I’m not as tired as before,” said Linda, who is 72 and cycles alongside 71-year-old Frank. “I’m not as fast as the others, but (the instructor) told me not to worry about it.”

At first, Linda needed help getting on the bike and strapping her feet into the pedals. Now she can do it on her own. She has gone from being able to cycle for just 10 minutes to 30 minutes.

“The other day I was on for 45 minutes,” she said. If she needs a break, she walks around the room for a few minutes then rejoins the class — without help.

But help is always close by. Two volunteers and the instructor circulate among the small group of stationary bikes pulled into a circle. Conversation and sharing are encouraged, but instructor Yvette Wilmath gently coaxes participants to keep up their speed and to push the pedals with their heels, not their toes — something people with Parkinson’s are prone to do.

A metronome taps out the beat so everyone reaches 80 to 90 revolutions per minute, the speed which, studies have shown, gives Parkinson’s patients the most benefit.

“Our participants tell us they have more of the better days than bad days since taking the class,” said Melissa Brockman, the South Tampa Family YMCA’s Pedaling for Parkinson’s coordinator and an exercise physiologist.

Sharon Eliason, 71, and her husband Fran, 72, have been taking the class for about two months. Sharon was diagnosed with Parkinson’s in 2010 and has involuntary body twisting, a common symptom of the disease. She, too, has improved over time and now has no trouble cycling for 40 minutes, twice a week.

Fran said Sharon is still able to work around the house doing laundry, the dishes and making beds. Together they do some form of exercise almost every day. “Exercise is better than medicine,” he said.

Pedaling for Parkinson’s is free for all members of the YMCA and for the first eight sessions for nonmembers. After eight classes, nonmembers can purchase an eight-class pass for $40. An annual membership is not required to participate.

The South Tampa Y is the only one currently offering the Pedaling for Parkinson’s program.

Not interested in cycling? Then try giving Parkinson’s a knockout punch. An exercise class based on the fitness and training routines of boxers is gaining popularity nationwide and has made its way to Largo.

Known as Rock Steady Boxing, it provides a challenging workout that helps improve the symptoms of Parkinson’s disease.

“I don’t know where I would be without this class,” said 54-year-old Rob Strathmann of Clearwater, who started taking Rock Steady about two and a half months ago. He credits the workouts with helping him remain on the job as a commercial truck driver.

Strathmann was diagnosed with Parkinson’s last March. When not on the road, he’s in class at least three days a week.

“I see people who have more advanced Parkinson’s than me and I know that’s my future. I don’t want to get there right away,” he said. “I see the others in the class and everyone improves.”

Classes include stretching and exercises that improve balance, coordination, flexibility and reflexes. Then it’s on to hitting the heavy bags and speed bags. Participants never hit each other, only the bags and the “focus mitts” that the trainers hold.

At the end, along with a cooldown, there’s some voice work — Parkinson’s patients typically develop a soft, low voice and have to work at speaking up to be heard. “We may yell, scream or sing,” said Rock Steady instructor and exercise physiologist Jordan Whittemore.

Rock Steady Boxing is offered six days a week at Bodyssey Performance and Recovery on Walsingham Road in Largo. The cost is $99 a month for unlimited classes. The initial assessment, boxing gloves and wraps are extra. Other Rock Steady locations can be found at rocksteadyboxing.org.

You don’t need to be an athlete or have boxing experience to participate. Class members range in age from 52 to 92. Almost everyone improves in some way, particularly with activities of daily living.

“One man in our class hadn’t stood up in the shower in seven years. He had to use a shower bench. Now he can stand in the shower,” said Whittemore. “One lady refused to do floor exercises because she has a history of falls and couldn’t get herself up off the floor. We taught her how to get up.”

Strathmann says exercise is as important as the prescription medication he takes for Parkinson’s every day. Especially since research suggests it might delay worsening of his symptoms.

“When I can’t go, it’s awful for me,” he quipped. “Boxing class is my best friend.”

Contact Irene Maher at imaher@tampabay.com.

>>If you go

Upcoming events

First Tuesdays: The South Tampa Parkinson’s Support Group meets at 11 a.m. at the Brookdale Bayshore retirement community, formerly the Grand Court Tampa, 4902 Bayshore Blvd. No charge, lunch provided.

Feb. 6: Partners in Parkinson’s, a free educational event for patients and caregivers, offers seminars, panel discussions and local resources from 8 a.m. to 3:30 p.m. at the Hilton Tampa Downtown, 211 N Tampa St. Breakfast and lunch provided. Visit partnersinparkinsons.org. (Click on “Attend an Event.”)

Feb. 20: USF Parkinson’s Disease Educational Symposium from 9 a.m. to 3 p.m. at the USF College of Public Health, 13201 Bruce B. Downs Blvd., Tampa. Free lunch provided. To get more information and to register by email, contact Jennifer Baker at jrbaker2@health.usf.edu.

April 9: Moving Day Tampa Bay, an annual walk-run fundraiser to benefit the National Parkinson Foundation. Starts at 9 a.m. at USF in Tampa , behind the Marshall Student Center, 4103 USF Cedar Circle. Register at parkinson.org. (Click on “Get Involved.”)

Ongoing: Exercise classes for people with Parkinson’s (low-impact cardio, tai chi, chair-based strengthening) and free caregiver support groups are available at the Jewish Community Center, 13009 Community Campus Drive, Tampa. Participants do not have to be Jewish. Cost is $120 per 12-week class. For more information, call (813) 396-0765 or email pdwellnessinitiative@gmail.com.

Whether it’s cycling or boxing, vigorous exercise can ease Parkinson’s symptoms 02/04/16 [Last modified: Friday, February 5, 2016 10:45am]
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© 2016 Tampa Bay Times

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A Physical Therapist’s Experience Treating PD

gthelen

I met Jason Kimber when he responded to my recent piece in the Tribune about challenges in PD treatment. Jason worked with PWP for five years in South Florida. He recently relocated to Tampa and loves living here.  As our conversation at the Oxford Exchange deepened, I realized Jason has a lot to say about growing personally as we respond to the disease.

He said this about his treatment philosophy: “I believe in a holistic, synergistic approach to treatment, which includes body, mind and spirit. I incorporate massage and stretching techniques into my program to address rigidity and anxiety that PD patients encounter.”

I was taken with his larger message and asked him to expand on it for a post on this blog. Here is one physical therapist’s take on growing with PD:

“When Gil asked me to write a post for him about the treatment of Parkinsons Disease from a therapist’s perspetive, I thought about how personal PD is for me and how devastating it can be. Two of my grandparents, my dad’s mom and my mom’s father, both succumbed to PD.

“I used to be really angry about it. How do I write about something that can be such a terrible blow, such a life changing event, and yet be uplifting at the same time? The answer is that over the years my perspective has changed from angry and bitter to hopeful and inspired.

“I am not here to sugarcoat. PD is a hard diagnosis to deal with. Many of my patients have told me about the soul searching they did when they got the news. Why did this happen to me? What did I do to piss God off? How am I going to end up? Those are the questions people wrestle with, particularly early on.

“It usually goes one of two ways. First, people either fall into a deep depression and do nothing, or they get motivated to fight back. I tell you, as a therapist, and as a coach, there is hope. So don’t despair. You have options.

“I have been working with PD patients for five years and have ten years experience as a PTA and massage therapist. I have seen miracles happen. I don’t say that it is easy. When you find the right program, you will work harder than you thought possible.

“You will sweat, and you will be challenged. But it is also fun and you will see positive changes. You will have fewer off days. Your balance becomes better. You will notice improved reaction times and improved coordination. People tell you that your posture is better or they stop telling you to speak louder because they can’t hear you. It is possible to get your life and your voice back.

“What is the key? Rigorous, whole body movement exercise that utilizes components of boxing, yoga, balance training, as well as stretching. Those take your body through atypical movement patterns that can help to retrain the brain.

“There are four components to improved neurological performance. The first is emotional. You have to feel good about yourself. Words and thoughts have power. They shape how we think and they shape our behavior. It is up to you to choose. Do you want to feel better? If the answer is yes, you have to do something about it. Exercise is the best antidepressant there is.

“The second component is coordination. Taking the body through atypical body movements is a great way to increase the coordination needed for safe performance of regular activities of daily living. The third component is strength. You need strength to safely perform as well. The fourth component is cognition. Study after study shows how exercise can improve our cognitive faculties.

“So this is the bottom line. Yes, you have a diagnosis of Parkinson’s Disease. Yes, it is a difficult road. But it is a road that can be traveled with dignity and honor.
It takes dedication and commitment. It takes getting up and doing the work even if you feel like crap. It is a possible and reachable goal to live life on your terms again, so get moving!”

Qualifications
Jason Kimber is a PTA, LMT, Certified Health Coach with over 10 years experience.
Certified in LSVT Exercise Program. He can be reached at 561-410-1022 or jasonpta93@yahoo.com .

Fight PD with Free Piano Lessons

The University of South Florida and the University of Miami – Schools of Music are collaborating on a new project to examine the effects of a summer intensive piano training course on memory performance and motor outcomes in patients with Parkinson’s Disease. They are recruiting for an experimental group (training group) and a control group (no training).

Eligible participants will complete three training visits: pre-training, post-training, and a one-follow up visit, to examine memory performance and motor performance. Members of the experimental group will receive a two-week intense piano course piloted last summer with aging individuals and found to be successful in improving cognitive performance. All materials are included. There is no cost to participate.

Classes are scheduled from May 16-27th
Classes are held at the USF School of Music (Room 216 – Piano Lab).

Contact Dr.Jennifer Bugos at bugosj@usf.edu or 813-517-9625 to see if you qualify.

A Light Note on Dark Chocolate from Parkinson’s News Today

The battle against Parkinson’s disease may be getting sweeter, with a new study underway seeking to understand if concentrated chocolate supplements could help alleviate the disease’s symptoms. A team of researchers from Dresden University of Technology, Germany, are busy conducting tests on 30 participants to further understand the benefits of phenylethylamine, a compound found in cocoa that has been linked to dopamine upregulation.

Parkinson’s disease causes a gradual loss of nerve cells and drop in levels of dopamine, eventually provoking involuntary tremors that can severely interfere with quality of life. Chocolate supplements contain as much as 85% cocoa, and the Dresden researchers hope to prove it to have non-pharmaceutical benefits for those suffering from Parkinson’s disease.

In the brain the compound is thought to act more as a neuromodulator than a neurotransmitter in that it binds with presynaptic vesicles and occupies the spaces that normally takes up dopamine. This causes a rise in free-circulating dopamine, which then boosts dopaminergic transmission.

In the study participants will be given 50 grams of either white chocolate, which has zero cocoa, or dark chocolate. The test will take place twice a day for one week, with the second week of the test involving other types of chocolate. This short experiment should help shed more light on the symptomatic differences between the two tests.