Posted by Marilyn Okonow

created at: 2010-10-06My husband Dale is on the Board of JF&CS and we have always supported the wonderful programs under the auspices of JF&CS. My father-in-law, Richard Okonow, suffered from Parkinson’s disease, so Dale and I knew first-hand the challenges that Parkinson’s patients face on a daily basis. It puts a tremendous strain on the caregivers as well as the patients. We also learned how widespread Parkinson’s is. When Richard passed away, (not from Parkinson’s), Dale and I, along with his friend Mitchell Robbins, whose father also had Parkinson’s, decided to provide the seed money to create a new program at JF&CS, that is, the Parkinson’s Family Support Program. This is the third year for the dance program, which helps those suffering from Parkinson’s move their bodies and try to improve their agility, balance, flexibility, etc. while moving to music and having fun. The dance program also provides opportunities for people to talk with the others in the group about the challenges they face, and they derive much comfort in being with others like them. Spouses and caregivers also receive support, learning how to keep their loved ones safe, find medical care, financial advice, get emotional support, etc.

Then, last year, Nancy Mazonson, who runs the Parkinson’s Family Support Program, decided to start a chorus for Parkinson’s patients and their caregivers. Parkinson’s patients often find it difficult to speak loudly enough for others to hear them, and this impacts their ability to socialize. When I found out that Nancy was starting a chorus, I volunteered to be the musical director, since, coincidentally, I have a Masters degree in Music Education from New England Conservatory and have professional singing experience. As musical director, I work with speech therapists from Massachusetts General Hospital’s speech and language department (MGH is co-sponsor of the chorus) to devise vocal exercises and teach the chorus members songs, help them with posture, breathing, enunciation, and good singing technique that can carry over to their speaking voices. Most of all, though, they have a lot of fun singing Broadway show tunes, songs of Gershwin and Porter, and music from a variety of other genres. Caregivers are welcome to sing with us, and often we see couples holding hands and having a wonderful experience together, despite the challenges of coping with the disease. This is our second year for the chorus. The chorus has doubled in size from last year but we are actively seeking new members. Our singers say they notice that they can be more easily heard on the telephone, for example, and their self-confidence improves.

So you see that my involvement with JF&CS is so much more than writing a check. I am working directly with some incredibly courageous people who are an inspiration to me every week when we make music together. Music is a common language and a way for people to communicate and express themselves. I feel gratified to have the opportunity to bring some pleasure into their lives using my talent and musical expertise. When I make a suggestion to them and I can hear the improvement in their voices, I get goose bumps.  This is what helping people is all about in a very hands-on way.

It is my experience that, even in tough economic times, people can step up to help with the causes that they are most passionate about. People suffer from Parkinson’s, whether the economy is good or bad, regardless of the unemployment rate or interest rates. Dale and I feel that during these tough times, it is even more important to give what we can and help when the opportunity presents itself. Dale and his friend Mitchell had the vision to recognize a need in the community, and they created a program that has snowballed beyond our expectations.