Table Of Contents
“Success Strategies for Parkinson Caregivers”
By MARILYN TAIT
Parkinson Educator, Motivator & Advocate
Executive Director, Parkinson Research Foundation
SPEAK UP! “Keep Talking When No One Wants to Listen”
The non-stop highs and lows of caregiving put you on an emotional roller coaster whether you like it or not. Unfortunately, the emotions often associated with caregiving are far from calming. Anxiety, frustration, anger, loneliness, depression and fear can make for a rough ride.
Uncontrollable mood swings can take the joy from the day and rob you of a peaceful night’s sleep. It’s common for long-term caregivers to feel the increased pressure of rising demands but for the good of all you must remain calm. The key is to let your feelings out a little at a time before you explode. The fastest and easiest way is to keep opening your mouth. There will never be a better time to talk too much!
- Share your thoughts with family members and friends whom you can trust with your feelings. Identify those who will listen objectively while offering sound advice and sincere concern. Gain strength and emotional support from those in your life who love you enough to listen.
- Right your feelings by writing them down. Journaling is an easy and effective way to release negative feelings the minute they pop up. Write at random. If your feelings are important enough to matter, they are important enough to write down.
- Keep the line of communication open between you and your loved one. Do not hold negative feelings in because it’s easier to say nothing. No one can read your mind. If you want others to know what you are feeling, tell them.
- Talk to yourself. Rely on the one who cares the most and is always ready to listen. When you’re down, pick yourself up with praise and positive affirmations. Always pat yourself on the back and silently take a bow.
- Seek counseling when the emotional impact of caregiving knocks you down and you can’t get up. If you try in vain to deal effectively with your feelings, do not hesitate to make an appointment with a professional counselor who can provide the necessary resources and emotional support you need.
Message from Marilyn…
If you cherish your sanity, speak up! There is no good reason to harbor your feelings. As a caregiver, think about what you are dealing with, physically and emotionally, and love yourself enough to open up and let your feelings out. Your mission is to maintain a positive relationship between you and your loved one. The caregiving challenges you face together, every day, have the ability to negate the finest relationship. To protect what you love the most, keep talking no matter what!
Click the Video Below To View The Virtual Tour
Parkinson’s found me, I’m happy I found Parkinson Place!
Parkinson Place in Sarasota, just off I75 at Beeridge Road is a first of its kind, destination site that keeps the body, mind and spirit up and moving for those living with Parkinson’s disease!
Open Monday through Friday from 9AM to 4:30PM, it’s the perfect place for engaging group activities, fun motivational programs, Ask-The-Doctor Lunches and so much more!
Good Days start at Parkinson Place! From the “Good Day” Café, with social time every Tuesday, to energizing physical activity & nurturing support groups, it’s all here!
Take your pick!
For physical activity join:
- “Dance for Parkinson’s”, Dancing with Freestyle Movements
- “Ageless Grace”, A 21 Chair Exercise Program
- “Giant Steps”, A Parkinson’s Fitness Class
For peace and balance, you will love “Gentle Yoga & Meditation” & “Simply Relax” both easy ways to cultivate emotional wellbeing for patients & caregivers
For enhanced speech, see you every Wednesday for:
- Voice Aerobics, Voice Exersize
- Singin’ In The Park Chorus
At Parkinson Place, you can stand up to Parkinson’s! Get strength from weekly empowerment programs:
- Parkinson Power and other fun upbeat motivational programs!
- WHO CARES? offering success strategies & support for caregivers
It’s easy to educate yourself & get involved with others sharing your experience! Join us for
- “Ask the Doctor”, a monthly lunch & learn
- “Do It All” , Parkinson Educational Series
- “Live it Up”, a full day of activity & connecting social time
- And Don’t forget, “Freestyle Friday’s”, filled with special events
- Also, Be sure to plan on fun holiday celebrations throughout the year!
Parkinson Place members, just like you, are happy & proud to say-
- This is my home away from home.
- I feel normal at Parkinson Place
- I love it here!
Miracles happen at Parkinson Place!
Those with quiet voices, SING!
Those with short steps, DANCE!
Those with little smiles, LAUGH!
See you at Parkinson Place! Membership is free! It’s the fun place to be!
BY: MARK GORDON | DEPUTY MANAGING EDITOR
Retired Washington, D.C., lawyer Larry Hoffheimer long sought to mitigate risk for clients.
Yet his new venture is a six-figure gamble that he can successfully help people with Parkinson’s disease get more out of life. Hoffheimer’s novel approach, through a Sarasota-based nonprofit he founded, Parkinson Place, differs significantly from traditional methods that focus on medical treatment and scientific research.
The idea behind Parkinson Place is to provide a community center open to anyone with Parkinson’s, a chronic brain disorder that can lead to tremors and difficulty moving. The center, which Hoffheimer says cost about $100,000 to open, offers free classes, lectures and seminars, on topics from voice aerobics to dancing with Parkinson’s. It also offers daily camaraderie, both for people with Parkinson’s and their caregivers.
“There is no destination site like this anywhere,” says Marilyn Tait, executive director of the Parkinson Research Foundation, a Sarasota-based nonprofit that oversees Parkinson Place. Tait has worked in the Parkinson’s field for 15 years. “We really push education and awareness.”
Tait and Hoffheimer’s long-term vision is to build a franchise-like expansion model, where Parkinson Place can be duplicated outside the Sarasota-Bradenton region. “Other communities will want to have similar Parkinson’s destination spots,” Hoffheimer says. “The exhilaration and acceptance we have gotten in the (Sarasota-Bradenton) area is both motivating and gives us validation.”
Parkinson Place opened in September, on the first floor of a two-story office building off Bee Ridge Road, just west of Interstate 75. The 7,500-square-foot office was previously a cardiac research center.
Tait and Hoffheimer say a place like Parkinson Place fills a void in the medical community. The center also has a dual purpose, says Hoffheimer, in that it gives potential donors to the Parkinson Research Foundation a tangible focus-point for giving. An edge like that is crucial in the competition to grab fundraising dollars.
“There are a lot of Parkinson’s organizations that have been around for 50 years,” says Hoffheimer. “Plus, there is also Michael J. Fox, who has raised millions of dollars.”
Adds Hoffheimer: “I had no bait.”
Parkinson Place is now that bait. The glistening facility is designed with a Zen-based feel and includes a 2,000-square-foot lecture hall. The holiday season, further, provided several chances for Parkinson Place to host showoff parties for health care organizations that were also awareness-building opportunities. Says Hoffheimer: “Now we have a crown jewel to raise money around.”
Hoffheimer founded the Parkinson Research Foundation in 2005. The organization had $2.46 million in revenues in 2011, up 83.5% from $1.34 million in 2010, according to its IRS 990 form. Some of those funds were put toward Parkinson’s educational programs and conferences.
The funds were also used to help raise more funds — a fact that earned the foundation a low score from Charity Navigator, a prominent nonprofit grading organization. Charity Navigator noted the foundation’s fundraising expenses in 2011 were 63.7% of its total expenses, which is considered on the high side.
Hoffheimer doesn’t dispute the ratings, though he does quarrel with the ratings system, which he says penalizes organizations that spend big to get bigger. The foundation, in the past, has contracted with national mail-based donation solicitation groups to raise money. “It’s an expensive way to raise money, but there is no way around it,” says Hoffheimer. “I’m not apologetic.”
Hoffheimer has been involved in Parkinson’s disease research and outreach for 30 years, going back to his legal career. A onetime federal prosecutor, Hoffheimer was also a health care attorney and lobbyist, with clients including the Mayo Clinic. He worked for several Parkinson’s and brain research groups, which is how he developed his passion for the cause.
Hoffheimer’s cause, and passion, is now to get the word out about Parkinson Place. “Once we get people here,” says Hoffheimer, “we know they will come back.”
SARASOTA, Fla., August 27, 2012—The Parkinson Research Foundation has announced the arrival of Dr. Juan Sanchez-Ramos, M.D., Ph.D. who will begin seeing patients in September at Parkinson Place, a facility that will focus on the improvement of the lives of persons living with Parkinson’s disease.
Dr. Sanchez-Ramos, a professor of Neurology at the University of South Florida in Tampa, Fl., will be the first fellowship-trained Movement Disorders specialist in Sarasota.
“Fellowship training in Movement Disorders provides a distinct advantage in the diagnosis and management of Parkinson’s disease,” said Lawrence Hoffheimer, Chairman and Founder of the Parkinson Research Foundation. “One needs only to review what a fellowship training program entails and how it prepares young neurologists for managing complex movement disorders commonly seen during the course of Parkinson’s disease,” said Hoffheimer.
A Fellowship-trained Movement Disorders expert has undergone rigorous training after completing a Neurology residency program. The fellowship is typically two years in duration, with continuation in the second year dependent on the fellow’s performance. Fellows in Movement Disorders work directly with a clinical attending neurologist with expertise in Movement Disorders during their first year, no less than three half days per week, in order to master the skills of evaluating the full range of movement disorder patients. In some programs, the fellows are encouraged to participate in basic laboratory research several days a week — as Dr. Sanchez-Ramos has done — in preparation for a translational research program where basic research is applied to experimental therapeutics. Alternatively, fellows take courses in epidemiology and statistics, clinical trial design, Botox injection for dystonia and programming deep brain stimulators.
The overall goal of a movement disorder fellowship is to develop the next generation of experts in the diagnosis, management and experimental therapeutics of the entire spectrum of movement disorders. Parkinson’s disease and essential tremor are the most common of movement disorders, but dystonia, tics and myoclonus are also managed by movement disorders experts. Individuals who complete Fellowship training in movement disorders are also well prepared to assume leadership roles in academic Neurology.
For more information, call 941-893-4188.
NOW 11,000 square feet and over 80 classes a month – OPEN 9 am -4:30 pm MONDAY – FRIDAY
SARASOTA, Fla., August 20, 2012—On September 5, The Parkinson Research Foundation (PRF), a national nonprofit organization focused on helping patients, caregivers and families to live fuller lives with Parkinson’s disease, in conjunction with the University of South Florida (USF) will open a new, first-of-its-kind center in Sarasota.
Dubbed “Parkinson Place,” the center will offer a variety of education, empowerment and participation programs for patients, caregivers and healthcare providers connected to the disease.
“There is no destination site like this anywhere,” said PRF Executive Director Marilyn Tait. “We have assembled the finest, evidence-based programs in a fun and positive environment where individuals with Parkinson’s can be proactive and engaged.”
There is no cure, but people with Parkinson’s are able to enhance their quality of life through positive attitudes, lifestyle changes and individualized medical management.
“We have also partnered with USF to bring a fellowship-trained movement disorders specialist to Parkinson Place,” she added.
Juan Sanchez-Ramos, M.D., Ph.D., holds the Helen Ellis Endowed Chair for Parkinson’s disease research at USF. As Medical Director for the Parkinson Research Foundation, he will consult with patients at USF’s satellite clinic within Parkinson Place. Dr. Sanchez-Ramos will see patients, by appointment only, and offer free “Ask the Doctor” lunch and learn monthly programs.
“Parkinson Place brings together a nationally recognized movement disorders specialist, Dr. Sanchez-Ramos; the top regional Parkinson’s educator and advocate, Marilyn Tait; and the national resources of PRF to create a first-of-its-kind destination for the Parkinson’s community,” said PRF Chairman Larry Hoffheimer. “Our center will lead the nation in delivering the latest evidence-based programs to the community, as well as studying the effects of various programs to contribute to the body of knowledge.”
Parkinson Place features a 2,000-square-foot auditorium for programs, conferences and community events; an information resource center; and a lending room for durable medical equipment. Programs offered will include dance, voice, music, yoga, nutrition, meditation, ability-based exercise, art and humor therapies, as well as empowerment programs, individual and family counseling, social activities and special events.
For more information, call 941-893-4188.