Parkinson's Disease, Parkinson's exercise, Support Groups

My Parkinson’s Crash Course

I wasn’t ready for a crash course in neurology that day two years ago. I was enjoying semi-retirement, assuming my medical writing days were far behind me. But then the doctor said, “You have Parkinson’s disease.”

Ever since, I have been immersed in Parkinson’s 101: what it means to live with a chronic neurological disease.

This month is Parkinson’s Awareness Month. Accordingly, I think even more about the 5,000 people in the U.S. who will also hear those words this month.

What do I wish I had known when I was diagnosed?

 It’s a snowflake disease. Just like a snowflake, each of us is unique and so is our Parkinson’s. Do not assume your disease will look like someone else’s.

Some symptoms are invisible. Because many of us associate Parkinson’s with movement symptoms, we may ignore signs of depression, fatigue, constipation, or sleep problems (especially acting out nightmares). In recent years, the medical field has recognized that such symptoms are part of the disease. If you experience them, tell your doctor so they can be diagnosed and treated for what they really represent.

A Parkinson’s specialist can help. Most of us see a general neurologist for our care, without realizing we might benefit from seeing a movement disorder specialist. Those neurologists, who have undergone two years of additional training, can help us to better manage the disease and stay current on research and clinical trials.

Staying active is essential. Parkinson’s may affect our movement, but staying active can help in the long run. Research shows that intensive, sustained exercise (such as boxing, hot yoga, interval cycling) can ease symptoms and combat fatigue. And that regular daily activity (going for walks, doing the laundry) can help improve life with Parkinson’s.

We can benefit from complementary care. In addition to medications, we can benefit from physical, speech and occupational therapy and the knowledge of nutritionists and psychotherapists. Putting together a care team of these professionals early on can pay off for years to come. But due to the fragmentation of PD care delivery, it takes effort on your part to assemble that team.

All support groups are not created equal. Support groups have different constituencies (young/elderly onset, newly diagnosed), different energy levels, different ambitions and agendas. Shop widely before you choose.

There is a lack of localized information. Patients want close-to-home answers. Where do I locate the physical therapy that doctors often suggest? How do I find a personal trainer who specializes in PD? Who can help me make my home safe from falls? Where do I enroll in recommended Tai Chi, spinning or boxing classes? In most locales, there is no one place to find answers to those and dozens more local questions. National PD foundations offer effective national advice but can only do so much at the granular, local level.

We can live well. Most importantly, I learned it is not only possible to corral the disease but essential to do so. Never, never give in to the disease or lose hope. Cognitive decline and dementia are worrisome (but not inevitable) accomplices to PD neuromuscular difficulties. Find your passions. Mine are advocating for research, raising awareness and sharing validated information.

Also remember that you are not are not alone. There are 1 million of us nationwide. Groups such as the Parkinson’s Disease Foundation and the National Parkinson Foundation are available to support us. Contact them to find information and resources. Together, we can not only live well with Parkinson’s, one day we can end it.

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

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

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.

Parkinson's Disease, Parkinson's exercise, USF

USF PD Seminar Saturday, plus Exercise and Apathy

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, Parkinson's exercise, Uncategorized, USF

Tampa Connector Update

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

Parkinson's Disease, Parkinson's exercise, Research

Research News About Boxing Therapy

News that Rock Steady Boxing works for PD patients

The Miami Herald wrote a feature story about a local Rock Steady Boxing program. Deep in it was real news about research confirming the program’s effectiveness. Here is the nugget:

“Stephanie Combs-Miller, associate professor at the University of Indianapolis’ Krannert School of Physical Therapy, recently conducted the first major study on the effects of boxing therapy on Parkinson’s. Over a two-year period, 88 volunteers, half of whom participated in Rock Steady Boxing, were tracked every six months using physical therapy assessments.
“’We found that people who exercise in a boxing program demonstrated a higher level of function,’’ she said in a release about a lecture she was giving on the subject.
“The theory is that the combination of activities connected to the boxing helps develop strength, agility, endurance and flexibility. Over time, the participants who did the program demonstrated significantly better balance and walking function, compared with Parkinson’s patients who chose other forms of exercise.”

Combs-Miller’s study has not yet been published in a scientific journal. There has been widespread scuttlebutt that the results were positive,

On a personal note, I continue the training three times a week and have improved balance, agility and coordination. My off days are way down. An informal poll of my exercise mates confirmed my experience was also theirs.

A Beautiful You Tube video on participatory medicine

Don’t miss this video on the benefits of a collaborative relationship between doctor and PD patient. It goes to the heart of the argument for a revolution in the continuity of Parkinson’s care.

A Deserved knock on PD treatment nostrums

My friend and fellow retired editor Doug Clifton has written a lovely essay on the dangers of nostrum remedies for PD. Check it out.

PDF Help Line

The Parkinson Disease Foundation offers a reminder about its help line. Someday I hope to have a local version for Tampa Bay.

Do you have questions about Parkinson’s? PDF’s HelpLine team is ready to be a resource for you, your loved ones and patients. Our information specialists
are available Monday through Friday, 9:00 AM to 5:00 PM ET at (800) 457-6676 or info@pdf.org. They can answer questions about PD, point you toward local doctors, support groups and resources, and send free educational materials.

.

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

TAMPA SEMINAR, BOXING UPDATE, RESEARCH MORSELS

FOX SEMINAR ON PD IN TAMPA FEB. 6

Partners in Parkinson’s is coming to Tampa on Saturday, February 6. The event features a full day of panel discussions, breakout sessions and a resource fair to connect you with clinicians, support and exercise groups and other resources right in the Tampa community.

WHERE:
Hilton Tampa Downtown
211 North Tampa Street
Tampa FL 833602

WHEN:
Saturday, February 6, 2016
8:00 a.m. – 3:30 p.m.

Partners in Parkinson’s events cover topics related to all stages of Parkinson’s disease. Whether you’re newly diagnosed or have been living with Parkinson’s for years, you will learn:
• How Parkinson’s impacts everyone differently, and how to tailor a care team that meets your specific needs
• What to know, ask and expect at an appointment with a movement disorder specialist
• Updates on the most promising Parkinson’s disease research
• How to live well with PD by incorporating diet and exercise into your lifestyle
• The benefits of staying connected to loved ones and to the community
Registration opens at 8 a.m. and a continental breakfast and lunch will be provided.

Visit http://partnersinparkinsons.org to learn more or RSVP today.

MY WEEK FOUR REPORT ON ROCK STEADY BOXING
After four weeks of Rock Steady Boxing experience, I am an even bigger fan. Working out 3x a week has improved my balance markedly and decreased blah days. My training mates offer the same positive assessment Do it if you can. See my earlier post for details.

AARP PRESIDENT BOOSTS PALLIATIVE CARE

Palliative Care, often the missing link in PD management gets a boost from the heavy-hitting AARP.

http://www.aarp.org/politics-society/advocacy/info-2015/palliative-care-living-with-dignity-english.html


IS GOLDEN OLDY ASPIRIN GOOD FOR PD?

Have a look at http://www.pdf.org/en/science_news/release/pr_1450710960

UPDATE ON NILOTINIB

My support group friend Doug Dear passes along these intriguing reports on the anti-cancer drug Nilotinib and its possibilitise for PD treatment:

http://www.npr.org/sections/health-shots/2015/10/17/448323916/can-a-cancer-drug-reverse-parkinsons-disease-and-dementia

https://gumc.georgetown.edu/news/Cancer-Drug-Improved-Cognition-and-Motor-Skills-in-Small-Parkinsons-Clinical-Trial

http://movementdisorders.ufhealth.org/2015/10/22/nilotinib-tasigna-for-parkinsons-questions-and-answers/

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

TRAIN YOUR BRAIN WITH COMPUTER GAMES

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.

Parkinson's Disease, Parkinson's exercise

I’m Boxing Against My Parkinson’s

I now have boxing gloves. Red ones.

I have signed on to a rigorous exercise program called Rock Steady Boxing. It is offered in Largo, FL at Bodyssey gym on Walsingham Road not far from the beach.

For now, the Largo location is the only one in the Tampa Bay area. That’s a 70-minute haul from our Hillsborough manse, in the best of traffic conditions. If the franchise program is as good as its press and promise, I bet it will soon jump the bay into Tampa.

Rock Steady has received a great deal of positive, anecdotal notice lately on CBS TV, local TV and in the Tampa Bay Newspapers (TBN) weekly group. From my two visits, I think the Rock Steadiers are on to something very promising.

TBN reporter Chris George got there before I did. Gym owner Tara Schwartz pitched program benefits this way to George: “ The studies have shown that forced intense exercise has slowed the progression of Parkinson’s. Parkinson’s slows the conduction of the nerve to the muscle, so everything slows down. Boxing does the absolute opposite of that. And it’s a non-contact form of boxing.”

Good elevator speech, Tara. I watched one day. Signed up and worked out the next. Ninety intense minutes to pulsating music and demanding, disciplined but supportive instructors: “elbows up…jab, jab, hook…chest out, stomach in…just 10 more seconds.”

By coincidence, I just ran across this article about intense exercise and how it relieves Parkinson’s symptoms. It talks about yoga but the principles also apply to boxing.

Schwartz’s class typically has 12 to 15 participants who work out ideally at least three days a week. Said Schwartz: “While focusing on overall fitness, strength training, reaction time and balance, workouts include: ring work, focus mitts, heavy bags, speed bags, double ended bags, jump rope, core work, calisthenics and circuit weight training. No boxing experience is necessary and people of all ages are invited to participate.” For more details, check out her website, including fees.

The session I attended ran 90 minutes and had 30 minutes of stretching exercises, 30 minutes of weight training and 30 minutes of working on the punching bags. I intend to give you periodic updates on my progress and impression of the program as I go forward.

One follow up to the palliative care conference in Denver follows:
http://blog.pdf.org/2015/11/30/improving-palliative-care-throughout-the-pd-journey-qa-with-kirk-hall-and-gil-thelen/