Category: Uncategorized

Uncategorized

Revisiting Dementia Risk in PD

gthelen

For many of us Parkies, dementia is the greatest fear. The medical literature typically refers to “many” of us being destined for some form of it (example “Parkinson’s Disease Q&A, Seventh Edition,” Parkinson’s Disease Foundation). I’ve read estimates up to 75%.

But is our real risk lower? “Fortunately, dementia occurs in only about 20% of people with Parkinson’s disease, “ according to a 2015 review of Parkinson’s dementia in “EMedicine and Health.”

“If patients experience hallucinations and have severe motor control (problems versus tremor predominance), they’re at higher risk for dementia. The development of  dementia is slow.  Typically,  people that (sic) develop symptoms of dementia do so about 10 to 15 years after the initial diagnosis of Parkinson’s disease.”

The review goes on to say: “Some researchers suggest that at least 50% of people with Parkinson’s disease have some mild cognitive impairment and estimate that as many  as 20% to 40% (of those) may have more severe symptoms (of) dementia.”

Who Gets PD?

The Neuro Institute of Sarasota answers this way: “We used to think it was associated with professions such as arc-welding or steel mill work, but more recent studies have not confirmed this; in fact, it seems to be more prevalent in engineers, accountants, and doctors, suggesting that these patients are more likely to seek help and be diagnosed.”

Sensory Loss in PD

For some of us, sensory loss frustrates our everyday routines. My reduced sense of feel in both hands makes for too many incidences of the “dropsies.” My temperature control is often haywire, making me feel hotter than the actual room temperature would suggest.

The possible reason? A 2008 study of skin samples by Maria Nolano, etc. shows a significant loss of sensory nerve ends in the hands of parkies.

Recommended Reading

Two recent articles are worth your attention. Barbara Peters-Smith, medical writer for The Sarasota Herald-Tribune examines the extensive and very impressive PD support and treatment options in Sarasota County, including, two, (count them two) care and treatment organizations. Eat your heart out Hillsborough and Pinellas parkies.

The second article of note is ESPN’s long feature on Rock Steady Boxing, which again raises the question of when Hillsborough will get a franchise.

Parkinson's Disease, Research, Support Groups, Uncategorized, USF

More on living well with PD

gthelen

I spent time last week in virtual conversation with two very interesting people who have much to say about living well with Parkinson’s disease.

One is John Baumann, a motivational speaker now living in Sarasota. He has tamed his PD with a fierce exercise routine and steely determination.

The other is Diane Cook of Denver, a leading proponent of employing self-efficacy principles in better managing PD.

The two come from different backgrounds but converge at a common point.

Baumann, who will speak to the Sun City Center support group and guests Monday April 18, boils his message down to this:

“ Whatever hand life deals you (whether your fault or not), whatever life-changing adversity you have to endure, you still have some control over it, to not just live well, but live an AMAZING LIFE. It takes faith in yourself, discipline, determination, desire, intensity, inner strength. For me, it was having Parkinson’s disease in my 30’s; I am 54 today and have very few symptoms.”

The support group invites all Parkies and caregivers to attend this special event sponsored by the South Shore Coalition for Mental Health and Aging. The meeting is 1:30 – 3:00 p.m. at Sun Towers Retirement Community 101 Trinity Lakes Dr. Sun City Center. For additional information call Debbie Caneen at 813-892-2990

A National Parkinson Foundation grant springing from money raised at last year’s Moving Day Tampa Bay walk supports his talk.

•

This year’s walk is Saturday at the University of South Florida Marshall Center starting at 9:00 a.m.
The event is for all ages and abilities. You will see a variety of movement activities, such as yoga, Rock Steady Boxing, dance, Pilates, Tai Chi, stretching and much more before the walk. The purpose is to celebrate the importance of movement in our lives. For more information go to: http://www.MovingDayTampaBay.org

•
Diane Cook’s explanation of how self-efficacy works in PD is quite similar to Baumann’s philosophy:

“Our belief in our own capacity to produce positive outcomes from our actions determines what we are able to do with the knowledge and skills we have. Our self-efficacy beliefs are more about what we think we can do with our skills than they are about what skills we have.

“Self efficacy is about having the confidence to be able to integrate our skills into a course of action and perform under a specific set of circumstances and challenges, such as managing chronic, progressive disease. Our self-belief influences our thought processes, emotional state, motivation, and patterns of behavior. It influences the challenges we undertake, the effort we expand and our perseverance in the face of difficulties.”

Cook offers a short, intriguing self-evaluation for you to take to measure how well you are managing your condition. It’s found here:

Click to access Self-Efficacy_Brochure_projectsparkorg_1.pdf

•

In my reading this week, the web brought me some interesting observations from Australian Ben Basger. He is a lecturer and tutor in pharmacy practice, Faculty of Pharmacy, The University of Sydney. Here they are:

”The earliest pathological evidence of PD starts in the nervous system of the gut, medulla and olfactory bulb and spreads transneuronally to the midbrain (substantia nigra) and then the cortex. This may explain why non-motor symptoms of PD, such as constipation, hyposmia (reduced ability to smell) and rapid eye-movement sleep disorder often precede the typical motor symptoms, and why cognitive impairment is nearly always found in people with longstanding PD.

”These non-motor symptoms, together with fatigue and depression, may precede diagnosis by as much as 25 years.

“Advancing PD is further complicated by the loss of non-dopaminergic neurons, contributing to disturbances of gait, posture, autonomic nervous function, speech, cognitive function and sleep that may become unresponsive to dopamine. Dopamine replacement alone becomes inadequate.

”Although PD is a progressive disorder, deterioration is typically very slow, with considerable individual variability. The time to commence drug treatment for motor symptoms is when they are causing physical or psychological disability. It is a misconception that PD treatment is only effective for a limited time and should be deferred for as long as possible to reserve that benefit.

“All dopaminergic medications can cause nausea, gastrointestinal symptoms, hypotension, drowsiness, cognitive symptoms and impulse control disorders, but these are more common with dopamine agonists (e.g. pramipexole, ropinirole) than with levodopa/dopa decarboxylase inhibitors (LD/DDIs).

“For most patients with PD, motor fluctuations and dyskinesias (abnormal movements) are not disabling and can be adequately managed by manipulating the oral drug regimen.

”The incidence of dementia increases with duration of PD. It is characterized by fluctuating cognition and visual hallucinations. Cognitive impairment affects up to 75% of people who have had PD for at least 15 years, although the main risk factor is advancing age.”

Uncategorized

MOVING DAY 2016

gthelen

MOVING DAY 2016

I am participating in the Moving Day Tampa Bay walk benefiting the National Parkinson Foundation. It’s Saturday April 9, 2016 at the University of South Florida Marshall Center starting at 9:00 a.m.

The event will be for all ages and abilities. We will see a variety of movement activities, such as yoga, dance, Pilates, Tai Chi, stretching and much more before the walk. The purpose is to celebrate the importance of movement in our lives. My team is Rock Steady Boxing Tampa Bay.

I work out at Rock Steady at least three days a week. The program has made an enormous difference in my quality of life and sense of well-being. The program was funded in part by contributions to last year’s Moving Day.

Our team will demonstrate Rock Steady techniques at this year’s event.

 Please consider being a part of my team or sponsoring me, and I encourage you to get your friends, family and coworkers involved. For more information visit
http://www.MovingDayTampaBay.org

A SECOND TAMPA Y OFFERS INTENSIVE CYCLING FOR PARKIES

The Bob Sierra YMCA in Northdale is starting the Pedaling for Parkinson’s program, which is open to Parkinson’s patients and caregivers. It joins he South Tampa Family Y in offering the program. The Y is at 4029 Northdale Blvd. Phone number
(813) 962-3220

You will need a medical release signed by your neurologist or primary car physician.

The classes are twice a week, on
Tuesdays and Thursdays at 11:00 AM and last for 1 hour.

It is free for the first 8 weeks. If you have Silver Sneakers the program is free after the eight weeks. Otherwise, a Y membership is required and covers the program’s cost.

I do the South Tampa program and find it highly effective in relieving PD symptoms. I do it in conjunction with Rock Steady Boxing in Largo.

Contrary to other reports, the New Tampa Y has no plans to start the cycling program.

PDF’s NICE TAKE ON EXERCISE BENEFITS

This piece is authoritative and worth your time reading.

http://www.pdf.org/spring16_exercise?utm_source=newsletter&utm_medium=email&utm_campaign=general

GIL AND SHERRY HARDEN GET SELF-EFFICACIOUS (BUT IT COULD BE WORSE)

Sherry Harlan — longtime USF PD research associate and key member of Dr. Robert Hauser’s team—and I have been chosen to learn “self-efficacy” skills and apply them to the support of newly diagnosed Parkies.

The sponsoring organization is the Parkinson’s Disease Foundation. PDF discusses and defines self-efficacy:

“What happens when a person is diagnosed with Parkinson’s?
Many people are handed a diagnosis with very little guidance on what to do next.

“But the diagnosis is life changing. Facing life with a chronic progressive disease means facing changes to health, relationships, family life, employment and finances.

“Research tells us that when people are given the resources to cope with these changes, they are empowered to take an active role in managing PD, leading to better health and quality of life.

“PD SELF (Self-Efficacy Learning Forum) is an innovative disease management program that offers this approach. It was developed in 2013 by Diane Cook as part of a clinical trial sponsored by the Colorado Neurological Institute.

“Based on the psychosocial theory of self-efficacy, PD SELF helps people newly diagnosed with PD to create a personalized approach to managing their disease. Self-efficacy is the confidence a person has in his or her ability to influence an outcome or be successful in achieving a result.

“ Self-efficacy beliefs determine how people think, feel and motivate themselves. It is increasingly used in health care for its effectiveness in helping people to adopt healthier behaviors.
A central focus of PD SELF is to help people strengthen self-efficacy beliefs, thereby positively influencing the management of their disease. At the end of the first clinical trial testing this approach, researchers found that PD SELF:
Improved mental health and well-being of people
with PD and their care partners.
Decreased participants’ stress, anxiety and depression and improved sleep.
Improved participants’ emotional well-being, even when PD (or general health) declined.
Led to long-term improvement in the areas above, with changes observed for as long as one year after the clinical trial ended.
Led participants to become more active in the Parkinson’s community, for example through increased enrollment in clinical trials.”

Uncategorized

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]
Photo reprints | Article reprints
© 2016 Tampa Bay Times

Uncategorized

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.

 

Parkinson's Disease, Parkinson's exercise, Uncategorized, USF

Tampa Connector Update

gthelen

Tampa Bay Helpline

I wrote again about the need for a Tampa Bay Connector/Helpline/Hotline to answer very specific and granular questions about patient needs in PD. You will recognize some of the prose from earlier posts. It appeared Sunday Jan. 24 in the Tampa Tribune. Those of you with social media, please consider promoting it. Maybe we can create a small bandwagon in its favor and get institutional help. My bet is on Florida Hospital-Tampa, the former University Community Hospital, stepping up. A well-placed neurologist tipped me that something IS going to happen SOMEWHERE and to stay patient.


Exercise

Here’s another strong vote for hot, sweaty exercise as a key component of your exercise program.

I am feeling rejuvenated by my regimen of three days of Rock Steady Boxing and two days of spinning at the South Tampa Family Y. That spinning class needs and deserves more participants than it has now. See my earlier post for details.

Anxiety

Anxiety is a major complaint of Parkies, but little research is being dome on the topic. Here’s a valuable webinar on the topic.

http://event.netbriefings.com/event/pdeb/Archives/pdanxiety/register.html


Remember to RSVP Fox and Hauser Seminars

Tampa Bay hastwo strong PD seminars upcoming in February.: Fox/PDF on the sixth and Hauser on the 20th. Remember to sign up now to secure a spot.

http://partnersinparkinsons.org
Hauser 2016 seminar

Parkinson’s Disease

Educational Symposium

Presented by:

Robert A. Hauser, MD, MBA

Professor of Neurology, Molecular Pharmacology and Physiology

Director, USF Health Byrd Parkinson’s Disease and Movement Disorders Center of Excellence

SAVE THE DATE!

Saturday, February 20th, 2016

Time: 9:00 am- 3:00 pm

Location: University of South Florida

College of Public Health

13201 Bruce B. Downs

Tampa, FL 33612

Auditorium 1023 A-B

 

 

 

 

 

 

 

 

_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _

Registration Form

 

Name: _________________________________   Number of People Attending: ___________

Address: _______________________________

_______________________________

Phone: _______________________   Email Address: _______________________________

 

 

 

For more information or to register by email, please email Jennifer Baker at jrbaker2@health.usf.edu. Register by mail, send to 4001 E. Fletcher Ave, 6th Floor, Tampa, FL 33613. Due to high call volume, phone registrations will not be accepted.
LUNCH WILL BE PROVIDED. SPACE IS LIMITED

Uncategorized

ANOTHER EXERCISE OPTION FOR TAMPA BAY

gthelen

The South Tampa Family YMCA (4411 S. Himes Ave. (813-839-0210) has begun a cycling program  specially designed for Parkinson’s patients.

It utilizes stationary bikes in a spinning program designed to provide vigorous exercise to combat Parkinson’s symptoms and progression. It is free for the first eight-week session. After that, people with Silver Sneakers cards can continue the program at no cost. Others will pay $40 for six sessions.
The pedaling program is the latest of several new Parkinson-specific exercise programs announced or open in the Tampa bay area. I will describe the Y program in some detail and reference the other programs that I’ve written about previously. This should be a good list for New Year’s resolutions.
According to the YMCA brochure: “The Pedaling For Parkinson’s program uses high-cadence cycling (80 to 90 rpm) to forestall the progression of the disease, alleviate many symptoms and even reduce medication.
“Results vary due to the broad range of Parkinson’s symptoms, but it is clear that extended periods of forceful exercise have positive effects. For Parkinson’s patients, these can include reduction of tremors and dyskinesia, as well as cardiovascular benefits, increased leg strength, and better balance and core strength.
“Pedaling a bicycle may change the life of someone with Parkinson’s disease. Research conducted at the Cleveland Clinic showed a 35% reduction in symptoms by the simple act of pedaling a bicycle at a rapid pace — optimally, 80-90 revolutions per minute. Fast pedaling is not a cure of Parkinson’s disease and should not be touted as such, but there is compelling evidence to show that it does make a real difference for many who try it.
“A medical provider consent and clearance form is required to register. The form must be completed and signed by your neurologist or primary care physician.
“Your provider can complete the form and fax it to the South Tampa Family YMCA at
 813 831 2354, attention: Pedaling For Parkinson’s.”
The YMCA
asks you to complete this form, detach from the brochure and return to the Welcome Center at the South Tampa Family YMCA.

Name ______________________________________________________________________________
Birthdate: _______/_______/_______

Age: ________________________________________

Are you a current YMCA member? Yes No

Address: ______________________________________________________________________ City: _______________________ State: _____ ZIP: __________________________________ Phone: _____________________________________________________________________ Email: _____________________________________________________________________ How did you hear about the program? __________________________________ _______________________________________________________________________________________

EMERGENCY CONTACT

Name: _____________________________________________________________________________

Phone: ____________________________________________________________________________

Relationship: ____________________________________________________________________

PHYSICIAN
 Name: _____________________________________________________________________________
Phone: ____________________________________________________________________________
Current medications: _________________________________________________________

Other health concerns we should know: ________________________________

The LSVT Big Program

A second, existing program I have not mentioned before is the LSVT Big program. It is available by prescription from your neurologist and is offered at Florida Hospital Tampa.

According to the program’s brochure: “LSVT big is a research-based, exercise approach developed from principles of the effective Parkinson’s specific speech treatment LSVT Loud. The LSVT programs have been developed and scientifically researched over the past 20 years with funding from the National Institutes of Health. Research on LSVT Big has documented and improved ratings on tests of motor functioning in people with PD following treatment.

“Improvements include: faster walking with bigger steps, improved balance, and an increase trunk rotation. LSVT treatment consists of: 16 sessions: 4 consecutive days a week for four weeks. Individual one-hour sessions. Daily homework practice daily carryover exercises.”

For more information contact Florida Hospital, 3102 E. 138th Ave. Tampa, phone number 813-615-7253. The LSVT website is WWW. LSVT global.com.

Beginning in January the Jewish community center/ National Parkinson’s Foundation exercise program begins three days a week’ read more about it at this post.

The Rock Steady Boxing program is available in Largo. A second location next year will be at the Cypress Palms senior living facility in Largo. It is breaking ground on a new gym that is being built specifically for the program.

Leah Einboden, the program’s facilitator, said she’s hoping construction will be completed in January, and she already has more than 40 people signed up.

 

Uncategorized

PARKINSON SHADOW TOPICS, AND A BOXING UPDATE

gthelen

COGNITIVE LOSS

Some aspects of Parkinson’s disease are not popular conversation topics in the PD community. They are the shadow issues too delicate to cast light on routinely. Think cognitive loss and dying.

The Parkinson’s disease Foundation called my attention to a new study of cognitive loss in PD. University of Pennsylvania researchers followed 141 PD patients who had normal cognition at the beginning of the study. They found that 47.4% of the patients progressed to what’s called mild cognitive impairment after six years. MCI is a loss of some thinking, memory, language and judgment capacity.

The real attention getter in this study is that every participant who was diagnosed with MCI during the study progressed to dementia within five years. Hope is what drives us in our struggle with PD. But we can’t let that necessary hope blind us to the reality of significant cognitive dangers down the road.

DEATH AND DYING

I came across a provocative essay that appeared in the New York Review of Books this year. Marcia Angell, the former executive editor of the New England Journal of Medicine, wrote it. It was a long review of a moving book that I have read but not commented on in this blog.

When I read the book, it sparked my interest in the palliative care movement. The reason was Gawande powerfully documents through individual case studies how very often medicine ill serves patients at the end of life. Where comfort measures are called for, intense, costly, ultimately futile rescue efforts are often inflicted on patients who would prefer prefer otherwise. Both the book and the essay are worth your attention. Book details:
Being Mortal: Medicine and What Matters in the End
by Atul Gawande
Metropolitan, 282 pp., $26.00

NICOTINE PD PARADOX

Nicotine occupies a strange role in Parkinson’s. My interest as a cigar smoker is large in this issue. For some unknown reason nicotine appears to protect against PD onset and might even slow the progress of the disease. The prospect that a known carcinogen might just be helpful in PD it is almost laughable. The review article on the subject is provocative.

BOXING UPDATE

I’m entering my third week of the exercise program Rock Steady Boxing, which I have described an earlier blog post. I continue to be very impressed with the able physical therapists and the results I am experiencing.
Over the last two weeks I’ve experienced only one PD “down” day. You know, those blah days when it feels like you have the flu. Before the boxing program, I was experiencing those bad days about one day in five. Rock steady is available only in Largo in the Bay Area at present. That makes for a long Drive for Hillsborough PD patients, especially in rush hour. Program Director Tara Schwartz tells me she hopes to have a second program located either in or much closer to Hillsborough County by the end of 2016. That’s very good news indeed.

Palliative Care, Parkinson's Disease, Parkinson's exercise, Research, Uncategorized

TRAIN YOUR BRAIN WITH COMPUTER GAMES

gthelen

The scientific journal Neurology has editorially endorsed computerized training as a way to slow or prevent cognitive decline in Parkinson’s. The endorsement is somewhat tentative but definitely a boost for Brain Hq-like computer training: “…… cognitive training is modestly effective for improving cognitive function in people with PD.” The editorial concludes: “Given that PD is more than just a movement disorder, cognitive training may be an important option for improving cognitive function in patients with PD.” USF’s School of Aging Studies has a computerized cognitive study underway of PD and is seeking volunteers. The principal investigator is Dr. Jerri Edwards. For more information call USF’s Cognitive Aging Lab at 813-974-6703.

Tampa JCC Wellness Program Launches Jan. 23

The Shuffling Editor has gotten more information on the Tampa Jewish Community Center/USF Health wellness program for Parkinson’s. Exercise classes begin Jan. 26, run for 12 weeks and cost $120.

Tuesdays from 11:30 AM to 12:30 PM is Nia, a new term to me. Wikipedia describes Nia thusly: “Nia dance cardio fitness classes are taught by instructors licensed in the Nia Technique. Each class includes mindful movement guidance and somatic education; class cycles include warm-up, sustained non-impact aerobic conditioning, strength training, cool down and stretching. Nia Fitness classes are taught to music, including pop, electronica, jazz, Latin, New Age, Indian and hip hop. They employ 52 basic movements and techniques that draw on a combination of Jazz, Modern and Duncan Dance styles, Tai Chi, TaeKwonDo and Aikido; and the body mind healing arts of Feldenkrais Method, Alexander Technique and Yoga.”
Thursdays, same hours is chair-based strengthening.
Fridays from 1:30 PM to 2:3 0 PM is Tai Chi.
The Caregiver Support Group begins Jan. 29. It is free and runs for12 weeks on Fridays from 1:30 PM to 2:30 PM. A community event is scheduled Jan. 23, 7-9 PM. The topic is Keep Moving Tampa! For background and contact information see my earlier post: https://shufflingeditor.wordpress.com/2015/10/01/tampa-gets-grant-for-parkinson-wellness-program/

Rock Steady Boxing and Me

I am into the second week ( 3x times a week) of this slightly misnamed program. Of a 90 minute training session, no more than 30 minutes is devoted to punching hanging and big bags. The remaining 60 minutes is spent in floor, strengthening exercises, weight training and Balance exercises such as skipping, sidestepping, butt kicks, monster steps and backwards walking.

Two early observations of the program: I had not realized how degraded my hand-eye coordination had become. That sure explains why my golf swing left me. Second observation. I end sessions more energized than tired. Whether coincidence or not, I have not had a “bad” PD day since starting the program. Bad days are when you feel like you have the flu. I am accustomed to having them one day in five.

Huffington Post had a recent piece on the program: http://www.huffingtonpost.com/jonathan-j-doll-phd/rock-steady-boxing-for-people-with-parkinsons-symptoms—-a-national-perspective_b_8646972.html
The Largo program has no plans for a move into Hillsborough. But I have talked to a person who is seeking to put a franchise location in Channelside.

AN INVALUABLE RESOURCE GUIDE FOR THE NEWLY DIAGNOSED

My friend Kirk Hall has updated his information guide for those new to PD. It is pure gold and is a byproduct of the national research project on palliative care in PD. http://www.shakypawsgrampa.com/index.php/new-blog/entry/parkinson-s-education-resources-1-years-since-diagnosis

SPEAKING OF PALLIATIVE CARE

None of us likes to think our journey will end with dementia. In upwards of 50% of PD cases it does. The financial impact of dementia can be devastating. Money magazine has a helpful review of available options at Money.com/dementia.

Uncategorized

Beer, fatigue and assorted short takes

gthelen

I have burdened readers with long posts recently. As penance, I offer several short takes from my save file. Enjoy.

Partners in Parkinson’s has a neat quiz with great information nuggets. More than half of PWP say they are uninformed about the progression of the disease and treatment of both muscular and non-muscular symptoms. Scary but more evidence of the need for an organized, holistic system of PD care.

http://us3.campaign-archive2.com/?u=e6df77ba4568468be21042839&id=83feec455b&e=cd0ae0979d

My friend and fellow Parkie Jerry Iwerk, a beer lover, absolutely loved this article touting the “therapeutic” benefits of beer on PD. Consume at your risk.

http://www.ibtimes.com.au/drinking-beer-slows-down-alzheimers-parkinsons-disease-1417192#.Vil6pPArJUp.facebook

Fatigue is a common complaint with PD. The Parkinson’s Disease Foundation has made it a research priority. They offered this interim report.

http://blog.pdf.org/2015/08/12/you-asked-were-answering-fatigue-in-pd/

Depression is a fellow traveler with fatigue in PD. The National Parkinson Foundation issued this report on depression:
http://www.parkinson.org/Improving-Care/Research/Parkinsons-Outcomes-Project–Report-to-the-Commun#.VZUPiU0LO5Q.mailto

My friend Kirk Hall recommends an article on end of life discussions at http://journals.lww.com/neurologynow/Fulltext/2015/11040/Can_We_Talk___People_who_discuss_their_end_of_life.22.aspx. says Kirk; “Covers important topics like the importance of doing this, the importance of starting early, honoring the wishes of the patient, getting reluctant parents to talk, the role of doctors, explanation of terms and more! Very, very good!”