Month: January 2016

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

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Parkinson's Disease, Parkinson's exercise, Research

Research News About Boxing Therapy

gthelen

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.

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

TAMPA SEMINAR, BOXING UPDATE, RESEARCH MORSELS

gthelen

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/