Join us at Cranes Roost Park in Altamonte on April 1 to highlight movement as a symbol of hope and progress in finding a cure for Parkinson's disease. Weather you take part on a team or join as an individual, you'll get a chance to move with hundreds of supporters who share a common goal to help beat Parkinson's!
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
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.
On December, 8 the Happy Bunch Choir, performed a variety of holiday songs at Florida Hospital. Under the direction of Anissa Mitchell, Parkinson Outreach Program Manager has help form this unique group. There are a total of 14 members in the choir who all come together to form this harmonic group. They sang a variety of songs including, Jingle bells, Silent Night, and Frosty the Snow Man. This group performs at nursing homes, Florida Hospital and a few other locations.
Meet Ed Vihlen. He is a true Floridian, successful business man and a respected Navy Veteran. Ed is thankful to have two families. His first wife, Emma, returned to heaven leaving behind a son, Mike and daughter, Kim. Earlier this year Kim’s daughter, Emily had a little girl named Savannah making Ed a Great Grandparent. Sometime after Emma had passed, Ed met a charming young lady at the Lion’s Club named Flo. Ed married Flo and was blessed with another little girl named Mary Jo and boy named Ed. Their two families have grown making Ed a grandfather to Von, Layla and Colin.
When Ed was just 18 years old he volunteered for the service. During WWII he was aboard the USS Bon Homme Richard a CV 31 – large Air Craft carrier. Once he was done serving in WWII Ed decided to study Engineering at the University of Miami. Shortly after Ed graduated he decided to serve in the Korean War. He was stationed on the USS St Paul a CA – 73 which was a heavy cruiser. After Ed completed his service in the Korean War he wanted to put his degree to use. Ed and his brother then opened a construction business and called it, “The Vihlen Brothers.”
While Ed took pride in serving for his country he always knew that construction and architecture was his calling. The Vihlen brothers built luxurious custom homes all throughout Miami. Three of the homes they built were on the popular TV series Miami Vice. Many of their homes were featured in national magazines and received popular notoriety. The Vihlen Brothers went on to win prestigious awards such as, the Most Outstanding Concrete Structure in Florida in 1988 and the South East Aurora award for the most coveted symbol of building and design in the home building industry. At the age of 65 Ed decided to retire and started to appraise houses and spent the next 18 years doing so.
Ed lost his sense of smell over 20 years ago and was officially diagnosed with Parkinson’s disease 8 years ago. Ed and his wife Flo attend the Parkinson’s support group in Altamonte and have enjoyed connecting with others in the community who understand the struggles Parkinson’s can present.
This year, Ed has celebrated his 90th birthday and is looking at Parkinson’s differently. In the beginning Ed was frustrated that he had to give up so many things like hunting, his four-wheeler, and his truck. After some time had gone by Ed eventually came to terms with the diagnosis and encourages anyone who is diagnosed to stay active and connect with others who face similar struggles.
Every year Ed looks forward to the annual Walk for Parkinson’s fundraiser. He believes it’s a great tradition, but more importantly it is important to talk with your friends and neighbors about Parkinson’s disease. Raising awareness about Parkinson’s disease is important to supporting the cause and can lead to finding a cure.
This Holiday you can spread hope and joy by donating to the Parkinson’s Association of Central Florida and help your community expand programs and donate to research. Our goal is to help find a cure for Parkinson’s disease and promote those programs that have helped so many in our community. All contributions will be able to better serve the Central Florida communities of Orange, Seminole, Lake and Osceola Counties.
We have a three-pronged mission of research, education, and outreach to help countless people suffering from Parkinson’s disease today and develop better programs for the ones who will be diagnosed in the future. As we expand our programs and continue serving the Parkinson’s community think about making a donation this holiday to the Parkinson’s Association of Central Florida. Thank you for your support and happiest wishes this holiday season.
The Parkinson Association of Central Florida serves as a focal point to raise funds for the Orange, Seminole, Lake and Osceola Counties to support research for new Parkinson’s treatments. PACF is living out its mission and in return donated to help further research to find a cure for Parkinson’s disease. Donations made during our annual fundraiser, Walk for Parkinson and monthly donations made in memory of loved ones have provided funds for research to find a cure for this progressive disease.
To help benefit the community, PACF supports those individuals who are dedicated to making a difference for Parkinson’s disease. This year we have supported events such as the Art of Fashion hosted by Tonya Walker, an individual who was diagnosed with Young Onset Parkinson’s disease. The Art of Fashion benefited the Michael J. Fox Foundation and over 200 people attended the event to see the latest styles from twenty-four local boutiques and artwork from twelve local artists.
Another local event held to raise awareness for Parkinson disease was Pints for Parkinson’s hosted by Rose Babcock and her husband, Chris Babcock. In July the World of Beer in Dr Phillips helped host the successful fundraising event. Rose and Chris were able to contact local brewery’s to donate beer that World of Beer placed on their tap system. Each drink was $5 and additional raffle tickets were available to be awarded from raffle prizes that were donated from various breweries and event sponsors.
These two events brought attention to Parkinson’s disease and greatly improved the community by bringing attention to local businesses at the same time raising funds to be donated to research. Both events took time and dedication to plan in efforts of raising money for Parkinson’s research.
The Parkinson Association of Central Florida’s Sponsorship donations were made for these two events that helped both individuals reach their fundraising goal. PACF is proud to have such creative and enthusiastic members of the Parkinson community making a difference in the greater Orlando area. We are excited to see the growth of these events as the following year brings about more opportunities.
The Parkinson Association focuses not only on those with Parkinson’s disease, but focuses on how best to enhance the quality of life for those who are affected by Parkinson’s disease. Those who care for a loved one with Parkinson’s disease deserve some praise for their strength and patience with a progressive disease. Luckily, November is caregiver’s appreciation month and we have been sharing tips, stories, and resources.
To engage more in #caregiverappreciation month you can view our Facebook page and see our posts for caregivers appreciation month. If you enjoy what you saw be sure to “like” our page! Below are links to view all of our posts for the month of November in celebration of those who care for a loved one with Parkinson’s disease.
Michael J Fox Foundation: Advice for Loved Ones and Caregivers
Free Caregivers Guide: Advice from Lonnie Ali and The Michael J. Fox Foundation
Parkinson's Disease Foundation: Coping Skills for Parkinson's Care Partners
Caregiver Stress .com: Family Caregiver Distress Assessment Tool
Huffington Post: Encouraging Caregivers With Random Acts of Kindness
AARP Care Connection: 11 Affirmations for New Caregivers
Caregiver Action Network: 10 Tips for Family Caregivers
Moving and staying active is important to improving health and wellbeing especially for those with Parkinson’s disease. Not a runner? That’s no problem! This free app allows you to earn donations as you sweat. Track your exercise miles with the Charity Miles app and earn 10¢ per mile for bikers or 25¢ per mile for walkers and runners. The App is free and businesses such as Johnson & Johnson and Humana sponsor each individual who logs into the app. You can achieve your fitness goals by tracking how far you've walked, run or biked AND earn money for your favorite charity while doing it! This App has joined with over 30 different National charities including the Michael J. Fox Foundation, which donates directly to Parkinson’s research. We challenge you to get up and get moving with a purpose and earn money for charity.
How to get started with Charity Miles:
1. Download the app.
2. Create a login name
3. Join team PACF
4. Choose your charity
5. When you walk, run or bike track your activity mileage.
6. Earn money for your chosen charity for every mile you move!
Meet John Fisher. He is an avid golfer, tennis player, and fisherman. John is the husband of Gail, father of five, and grandfather to eleven beautiful grandchildren. He met his wife while they were attending the University of Illinois, got married two years later and started growing their family.
In 2005 John received the official diagnosis that he had Parkinson’s after seeing a neurologist. Prior to the diagnosis he lost his sense of smell, an early symptom of PD. While in college, John had a summer job where he was exposed to the solvent trichloroethylene. This chemical has been linked to the later onset of PD. Eventually John’s primary care doctor recognized his complaint of his small handwriting (micrography) when he would write so his doctor suggested he see a neurologist. At first the news was shocking since he was diagnosed shortly after retirement and hadn’t planned for a chronic illness. Even though Parkinson’s presents some challenges it hasn’t stopped him from doing the things he loves.
John is involved in many of the Parkinson’s specific exercise programs and enjoys them all. One of his favorites is the Golfing for Parkinson’s program. John Hughes is the instructor who is a PGA Master Professional, and founded the program. On the second Tuesday of every month the group meets at Falcon’s Fire Golf Course to play. Each month there is a solid group of golfers who come out and play.
John has participated in golf all his adult life therefore he knew he would enjoy John Hughes’s group. He plays with his golf partner Larry, who he met in the Pedaling for Parkinson’s group. Since he joined, John has made tremendous improvements to his swing. John Hughes provides lessons and shows each player that having Parkinson’s doesn’t stop your ability to play the sport.
These Parkinson’s specific exercise groups help make connections with people in the community and bring about new and special friendships. Becoming involved in not only the exercise programs, but the support groups can provide knowledge that isn’t always provided online. For those that are diagnosed, John suggests finding a neurologist who is specialized in movement disorders. He visits a specialist at the University of Florida’s movement disorder clinic where he has participated in more than five trials. Having knowledgeable doctors and staying active are important for those who are diagnosed with Parkinson’s. Keep moving and staying active in your every day life and continue doing the things you love to do.