Pedaling For Parkinson’s Group Celebrates 5 Years!

On Saturday, June 10 the Pedaling for Parkinson’s group met to celebrate the groups 5 year anniversary. Debbie Apple helps coordinate the group at the YMCA in Winter Park every Monday, Wednesday and Friday from 2:00-3:00pm. They have about 30 cyclers and promote the exercise as a way to help with PD symptoms by staying active in a fun and supportive group environment.

The program began when Debbie’s husband, Howie Apple was first diagnosed with Parkinson’s. Howie was an avid cyclist and through some research found clinical data supporting cycling as recommended exercise for those with Parkinson’s. The couple then took the Pedaling for Parkinson’s program to the YMCA and together the cycling program began.

The program starts out with a free 8-week session offered to people with Parkinson’s disease and their caregivers.  The 8 week timeline allows the individual to get a good sense of whether the class is a good fit or not. The class uses upbeat rock ‘n’ roll music to encourage a fast pace.Each individual is able to start out at a level they are comfortable with and gradually increase speed and distance. With a trained cycling instructor, the class is able to provide a supportive environment where each person can improve. With the common goal of fighting back against the progression of Parkinson’s disease the group sends a powerful message to keep active as a way to stay healthy.

Want to learn more or interested in joining this group? Contact Debbie Apple at 321-356-7899 or at debapple@aol.com. 

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What's Shakin'?

Florida Hospital’s Parkinson’s Outreach Center has developed a program specific for children ages 9-13 who have a parent or grandparent with Parkinson’s. What’s Shakin’ is an expressive arts group for children to share and express themselves through play, art and other forms of dramatic expression.

Living with a chronic condition such as Parkinson’s has an effect on the entire family. Often children have worries, concerns and feelings about their parent or grandparent but don’t know how to express them. What’s Shakin’ was developed as a pilot to help answer questions and provide children an environment to share and express themselves through forms of dramatic expression.

What’s Shakin’
Thursday, June 15 | 6:00 pm
Florida Hospital Parkinson’s Outreach Center
1685 Lee Rd. Ste. 110

Please call to register (407)-303-5295

Below is a video showing the importance of addressing a child’s perspective on Parkinson’s disease. This program is offering an outlet to understand the complexities of Parkinson’s.  

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Celebrate National Senior Health and Fitness Day

May 31 is National Senior Health and Fitness Day! There is a growing consensus amongst researchers about the short- and long-term benefits of exercise for people with Parkinson’s disease. From dance- and theater-inspired groups to spin classes, visit our website and explore our Parkinson exercise programs available across Central Florida.

Not sure what wellness activities are in your area? Check out our website with listings of programs you could become involved in!

PD Golf Program: This group meets once a month with PGA Master Professional, John Hughes as he provides tips and tricks to help improve your golf game. He is dedicated to helping inspire individuals with Parkinson's to continue exercising and enjoying the great outdoors.

PWR! Parkinson Wellness Recovery: Florida Hospital Sports Medicine and Rehabilitation offers a Medical Fitness Program that is safe and effective for people with Parkinson’s disease. The focus of this program is on improving movement, balance, and coordination through group-exercise sessions.

Art’s The Spark: This program exercises imagination and creativity by providing a fun and expressive environment for members of the community who may struggle with memory, but not their imagination. This event is held at the Orlando Museum of Art once a month and is held during non-public hours, offering an experience designed to use fine art as a catalyst for discussion and reminiscing.

Movement As Medicine: Modeled after the Dance for PD® program, Movement as Medicine addresses issues of flexibility, balance, spatial awareness and a sense of confidence through the use of creative and therapeutic movements and dance. Participants are empowered to explore movements with music that address these concerns in ways that are enjoyable, stimulating and creative.

Living Out Loud: Living Out Loud is a fun, interactive speech therapy group for those who have PD and have completed the LSVT Loud speech therapy. This is a monthly group, led by licensed SLP, and is offered at the Florida Hospital Church.

CHEER>DRAMA Therapy Group: This group uses laughter as exercise and Focuses on mood, movement and voice. This program is for both people with Parkinson’s and their caregivers.

Pedaling for Parkinson’s: Is a Parkinson’s-specific indoor spin class on stationary spin bikes that offers high-cadence cycling which has been proven in research to improve/impact motor function.

Rock Steady Boxing: This program is offered in two locations in Orlando. One is Central Orlando, at the Wadeview Community Center, and the second one is located in Longwood. Both programs help improve the quality of life of those suffering from Parkinson's disease and focuses on balance, strength and agility while incorporating boxing exercises.

KOPD – Knock Out Parkinson’s Disease: KOPD is a collaborative effort of TITLE Boxing Club, Florida Hospital and the Parkinson Association of Central Florida. Using four different TITLE Boxing Club locations, these classes are offered with reservations.

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Central Florida Represented at The Team Fox MVP Awards Dinner

Active in their efforts to raise awareness and funds, Tonya Walker, blogger for The Shoe Maven, and Rose Babcock along side her husband Chris are Fundraiser hosts for Pints for Parkinson’s. Both are Team Fox members and contributors to the Michael J Fox Foundation. These two teams work diligently to raise awareness and funds for Parkinson’s disease by planning and hosting events in the Central Florida Community. Earlier in the year, The Parkinson’s Association of Central Florida sponsored these community initiatives and donated money towards the Michael J Fox Foundation for Parkinson’s Research.

The awards dinner is an event hosted by the Michael J Fox Foundation to recognize the efforts of those who raise money for Team Fox. “We had an incredible evening at The Team Fox MVP Awards with Pints For Parkinson's Orlando and the rest of our Team Fox family. Parkinson's awareness month is coming to a close, but the fight for a cure continues,” Tonya stated.

Both members of the community had a wonderful time and feel motivated to continue their work in hosting events to raise awareness and funds for Parkinson’s research. To continue following these events be sure to follow The Shoe Maven and Pints for Parkinson’s Orlando on facebook.

Faces of Parkinson's - The Importance of Nutrition

 

Meet Don Bartlett. He enjoys spending time outdoors hiking, boxing and growing vegetables at the community garden. Don has been married to his wife Rhonda for 17 years and has three children; Nicole, Kristen, and their son Lars. Nicole and Kristen both live in Florida and each have two girls of their own, giving them four beautiful granddaughters. 

As the Senior Director of Nutritional Services at Florida Hospital, Don is an expert when it comes to Nutrition. He has dedicated much of his time researching the importance of proper nutrition as the first line of defense in fighting off disease. Author Michael Pollan sums up proper nutrition in seven simple words… “Eat food.  Not too much.  Mostly plants.”  By food he means eat close to the ground, minimally processed foods such as fresh fruits and vegetables.  Even though good nutrition cannot cure Parkinson’s, it can certainly mitigate the symptoms and improve quality of life.

Don was diagnosed with Parkinson’s in early 2015 although he had noticed something was “different” a couple of years before that. Some early signs were shaking in his right hand, voice softening, and his handwriting became a little more difficult. When he was first officially diagnosed his Neurologist explained he may have trouble with constipation as it is a common side-effect of PD.  The doctor stated she would be happy to write him another prescription to help.  Don quickly declined stating, “with a few prunes each morning and fresh greens from our garden at dinner, I’m good to go!”  Don is convinced that adhering to good nutrition principles has staved off advancement of many PD symptoms.

After his diagnosis, Don went through the normal course of emotions. He immediately contacted Florida Hospital’s Parkinson’s Outreach Coordinator and discussed ways that he could get involved. Don attended the Brain & Beyond Conference then shortly after that was introduced to the Parkinson Association of Central Florida (PACF) and was invited to join their Board of Directors. Immediately after joining he felt motivated by the board members who either cared for or have been diagnosed with Parkinson’s. The sense of community among board members and their own personal dedication inspired Don to educate himself and become an advocate for all affected by PD – the patients, their caregivers, and family alike.

PACF Sponsors Art's the Spark Program

PACF Donates to Orlando Museum of Art’s Program

The Parkinson’s Association of Central Florida sponsors Art’s the Spark, a program offered by the Orlando Museum of Art. This unique program is for those who are living with a memory, or neurological impairment, such as early stage Alzheimer’s or Parkinson’s disease and welcome’s their caregivers to join in this exploration of creativity.

Offered once a month on Saturday mornings, Art’s the Sparks provides a fun and expressive environment for members of the community who may struggle with memory, but not their imagination. Creativity is expressed and is a forum for dialogue through looking at and making art.

Art’s the Spark is lead by an OMA professional educator who will guide a private tour of the art’s exhibits then transition the group into an engaging studio art activity while caregivers enjoy social time and coffee.

The event is held during non-public hours, offering an experience designed to use fine art as a catalyst for discussion and reminiscing. The program strives to provide a rich and satisfying experience for all participants. Reservations are required due to limited attendance for this free event. Donations of $5 are suggested.

For more information please visit their website at  or contact 407.896.4231 ext. 261 or email dmatteson@omart.org to register.

Saturday mornings 10:30am-12pm
Dates
January 21, February 11, March 4, April 15, May 6, June 10, July 8, August 12, September 9, October 14
Attire
Casual, comfortable clothing, sweaters or light jackets recommended
Parking
Free parking, close to OMA entrance

Faces of Parkinson’s – "The Tremor Has Been Eliminated"

Meet John Alexander. He is a distance cyclist, triathlon competitor, and a loving husband, father, and grandfather. John has been married to his wife, Laura, for 42 years. They have two grown children, Brian and Jennifer. He is also the proud “Grampy” of Lilly, Lex and Danny.

With his daughter, Jennifer, he completed the University of Florida Super Sprint Triathlon twice: once in 2013 and the second time in 2015. He is committed to exercise and enjoys setting goals. After John was diagnosed with Parkinson’s in January 2010 he set a goal to ride 1,000 miles on his bike in one year. So far, he has cycled over 3,500 miles (the distance across the country). He accomplished this goal by riding 5, 10 or even 62 miles at a time. He also participates in PWR! Classes, a stretching and strength building class designed specifically for people with Parkinson’s.

John’s dedication to physical activity and advocacy in the Parkinson’s community is admirable. He is an Ambassador for the Davis Phinney Foundation, former board member of the Parkinson’s Association of Central Florida, and recently attended the 4th Annual World Parkinson’s Congress in Portland. John has educated himself on the symptoms and treatments of this neurological disease, and shares that knowledge with others.

Like many living with Parkinson’s, he had struggled with tremors rigidity, and Dystonia in his left arm, hand, and leg. For the first few years, these symptoms were managed well with medication. John became a patient of the University of Florida’s Center for Movement Disorder and Neurorestoration in October, 2013 to have his condition treated more holistically. His tremors increased in 2016, which required higher doses of medication. In the spring of 2016, his Neurologist proposed Deep Brain Stimulation (DBS) as a treatment option for Parkinson’s.

The first step John had to complete was a two-day pre-assessment evaluation. He was observed, tested, and examined by a Neurosurgeon, Neurologist, Psychiatrist, Physical Therapist, Occupational Therapist, Speech Therapist, and Neuro-Psychiatrist. Afterwards, the team met as a group to discuss his case before agreeing that John, in fact, was a viable candidate for Deep Brain Stimulation Surgery.

On October 5, 2016 John was fully prepared for his Deep Brain Stimulation surgery. A week before, his Neurosurgeon Dr. Kelly Foote, called to offer the option of having the St. Jude Medical Infinity DBS System installed. It had recently been approved by the FDA and offered unique advantages over other DBS systems on the market. By agreeing to this recommendation, John became the first person in the United States to have the St. Jude Medical Infinity DBS System implanted. For the initial surgery, John needed to be awake in order to communicate with the doctors. During the four and a half hours of surgery John felt surprisingly comfortable and didn’t experience any pain. He says, “After all, it was only brain surgery.” He had a great deal of confidence in his surgical team of Dr. Kelly Foote, Neurosurgeon, and Dr. Michael Okun, Neurologist; known worldwide as a DBS “dream team.”

John had a second surgery in November which involved implanting the Neurostimulation Generator (the battery). He did receive general anesthetic for that procedure. In the recovery room, his system was activated. While his doctor was adjusting the settings, he heard the doctors say, “The tremor has been eliminated.” Just like that John felt a sense of unimaginable relief.

Weeks have gone by and John has been busy speaking to groups about his experience and tries to encourage people to talk to their neurologist to see if this surgery could be an option for them. He explains that DBS surgery is not a “cure,” though it can have some very encouraging results. Many people say that because of DBS surgery, their symptoms were rolled back five years or more. The benefits can last up to ten years from the date of the procedure. For additional research John suggests the following books.

To learn more about John's experience click here to listen to a radio interview

 

“Parkinson’s Disease ‘Deep Brain Stimulation’ – A Practical Guide for Patients and Families” – by Michael S. Okun M.D. and Pamela R. Zeilman, MSN, ANP-BC. Available for free through the National Parkinson Foundation  

Davis Phinney Foundation – “Every Victory Counts” manual. Available for free through the Davis Phinney Foundation for Parkinson’s at “DBS A Patient’s Guide to Deep Brain

“DBS A Patient Guide to Deep Brain Stimulation” Monique L. Giroux, MD and Sierra M. Parris, PA-C. Available on amazon.com

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New Year, New Programs

The New Year is here and it brings new programs to the Central Florida area! Florida Hospital’s Parkinson Outreach Center has not one, not two, but three new programs. Living Out Loud, What’s Shakin’? and COPE are offering a wide variety of support and education for all ages and stages of Parkinson’s disease.

Living Out Loud is a new voice therapy group for those who have completed the LSVT Loud speech therapy program and would like to work on maintaining skills. This class is offered monthly on the third Tuesday from 1:00 to 1:45 pm at Florida Hospital Church. This program does have a fee of $75 dollars from a twelve-month session that equals out to $6.25 a class. The payment is payable at the beginning of the program.

For those who have children or grandchildren between the ages of 9-13 who has a parent or grandparent with Parkinson’s you should consider this fun new program. What’s Shakin’? is a drama therapy group for children and provides a fun and interactive laughter therapy to help children understand the symptoms of Parkinson’s disease. Each class gives children a chance to express themselves in a fun and safe way using metaphor, skits, art, drama games and more. What’s Shakin’?  is led by a registered drama therapist and Parkinson’s disease specific social worker. The program will be offered quarterly starting on February 2 at 6:00 pm. Registration is required and can be obtained by calling the Parkinson’s Outreach Center (407)-303-5295.

Care Optimally Parkinson Education for Caregivers, or also referred to as COPE class is a new education program. This caregiver education program prepares you for your journey navigating medication, doctors, as well as managing your own needs and stress is important to providing the best care possible for your loved one. COPE is also a support group and offers individual counseling sessions on a short-term, as-needed basis. The program is offered at various locations and times. Registration is required before attending.

For more information on other programs through Florida Hospital’s Parkinson Outreach Center see the 2017 Guide to Parkinson’s Empowerment Programs