By Kathy Senecal, Connecticut chapter director
Last week some members of the FSHD Society and I attended the Community Advisors Gathering at the Hospital for Special Care in New Britain, CT. The presenters were: Lynn Ricci, President and CEO; Wendy DeAngelo, Vice President of Development and Communications; and Dr. Kevin Felice, Chief of Neuromuscular Medicine.
The obvious dedication and compassion of the staff raised my awareness as to how lucky we are to have such a facility in Connecticut, (and an easy 2 hour drive from either Boston or New York City.) Their approach to you as a patient involves an interdisciplinary comprehensive team, which means at each annual visit you are seen by a variety of services to customize your care.
The interdisciplinary approach during your appointment involves a team of specialists, including the neuromuscular neurologist, neuromuscular nurse, physical therapist, occupational therapist, and social worker. Depending upon individual needs, other specialists that may see you during your visit include a dietitian, respiratory therapist, wheelchair specialist, and speech and language pathologists.
Your visit will take time, so be prepared to spend about two hours. One of the objectives of the neuromuscular center is to help you achieve your goals, and because of the support and knowledge of the team, my personal experience has been just that. As the disease progresses, the team is there to assist you in finding ways to achieve continued mobility and help you access a wide range of resources and new advances in technology.
I have enjoyed exemplary care since my initial diagnosis of FSHD in 2004. After attending this community meeting, I have a better understanding as to why this is such an outstanding hospital.
Hospital for Special Care ranks as one of the best places to work in the Greater Hartford Area. The quality of care is reflected in employees who are valued and appreciated. Some of the special therapies offered include Manes and Motions, an equine therapy program, Aquatic Rehab and Fitness Center, and an Adaptive Sports Program.
I still carry with me the presenters’ passion for excellent care that was so apparent during the meeting and hope there will be future opportunities, such as a FSHD Family Day, at this hospital so more people can experience this very special place.
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