Parkinson’s support group helps women find safe space
By Sean Sullivan
“I got an education I didn’t want,” she said. “It was completely unexpected.”
The neurodegenerative disorder’s most pronounced effect is a disruption of motor control. More specific symptoms include tremors of the arms, hands, legs and face. Gait and balance dysfunction, and rigidity of the limbs are also hallmarks of the affliction.
Now on the cusp of her 50th birthday, Brouillard is among a younger cohort of people diagnosed with Parkinson’s.
The percentage of older people afflicted with the disease is high enough that the term young-onset Parkinson’s was adopted to differentiate those of fewer years suffering from it. This incidence of the ailment is used to describe people aged 50 years or younger, who comprise about four-percent of those diagnosed with the disease.
The highest-profile person with Parkinson’s is likely Michael J. Fox, the actor whose journey is illustrative of how it can affect younger people. Diagnosed in 1991 at age 29, he kept his condition from the public until 1998.
Brouillard connected with Natick resident Cindy Bittker, who’s lived with the disease for more than 16 years, and who also carried the kernel of a support group with her for much of that time. Bittker had been compiling a list of local women with Parkinson’s, and partnering with Brouillard, used that as a tentative roster for their first meetings.
Over the course of the pandemic, Bittker worked on a website aimed at educating people about Parkinson’s, and was busied for much of last month with a big move to another town. The launch of the website will be a triumph of sorts before leaving Natick.
“Writing and organizing thoughts and actually finishing something becomes really difficult with Parkinson’s because of cognitive impairments,” wrote Bittker. “So it’s my victory march to get this thing online before I move.”
Brouillard and Bittker held their support group’s in-person meetings for about two years before the pandemic forbade such face-to-face gatherings. Their venue was the Natick Community Center on East Central Street, where they would meet monthly. At their inaugural meeting, the two hoped and expected three or four women would attend, and were surprised when 17 showed.
“The response has been tremendous,” said Brouillard.
The group transitioned to “zoom” calls last year, the now ubiquitous video conferencing that the rest of the world has adopted during the shutdown.
The switch, as other organizations have found, has brought with it some much-valued benefits. The commute is gone, and the reach of the group has expanded beyond borders. The video version of the meetings have become so successful and well-attended, that Brouillard says they may adopt the format permanently.
Brouillard works out regularly at Natick’s Longfellow Health Club, a local gym where she can be found gliding on an elliptical machine and participating in yoga and pilates classes. Movement, she said, is essential in staving off the symptoms of Parkinson’s.
“Exercise is one of the best things we can do. Anything you can do to keep moving and not stop. All that core work and balance work is so helpful.”
Theirs is the only Parkinson’s group in Massachusetts for women only, Brouillard said - a niche she and her co-founder saw a need to fill. The group is promoted as being for those with young-onset Parkinson’s, but women of all ages are encouraged to join.
Brouillard said there are a number of reasons why they saw the need for a gender-exclusive group. If a woman has served in a caregiving role, that can make the loss of functionality particularly acute.
“There’s actually a lot of unseen symptoms,” she said. “People rely on you. It really can be disruptive of that role in our lives.”
Some symptoms of Parkinson’s can also be quite personal, things that many might feel uncomfortable talking about in a mixed setting.
“I’m still doing everything I need to be doing in my life,” she said. “It really creates that safe space.”
An avid runner, Liz Brouillard noticed a strange sensation in right her foot about 4 years ago, a feeling that mimicked a cramping of sorts. It’s easy to attribute such a thing to the wear and tear of pounding the pavement, those acute aches and pains that that can accompany regular exercise.
“I got an education I didn’t want,” she said. “It was completely unexpected.”
The neurodegenerative disorder’s most pronounced effect is a disruption of motor control. More specific symptoms include tremors of the arms, hands, legs and face. Gait and balance dysfunction, and rigidity of the limbs are also hallmarks of the affliction.
Now on the cusp of her 50th birthday, Brouillard is among a younger cohort of people diagnosed with Parkinson’s.
The percentage of older people afflicted with the disease is high enough that the term young-onset Parkinson’s was adopted to differentiate those of fewer years suffering from it. This incidence of the ailment is used to describe people aged 50 years or younger, who comprise about four-percent of those diagnosed with the disease.
The highest-profile person with Parkinson’s is likely Michael J. Fox, the actor whose journey is illustrative of how it can affect younger people. Diagnosed in 1991 at age 29, he kept his condition from the public until 1998.
Brouillard connected with Natick resident Cindy Bittker, who’s lived with the disease for more than 16 years, and who also carried the kernel of a support group with her for much of that time. Bittker had been compiling a list of local women with Parkinson’s, and partnering with Brouillard, used that as a tentative roster for their first meetings.
Over the course of the pandemic, Bittker worked on a website aimed at educating people about Parkinson’s, and was busied for much of last month with a big move to another town. The launch of the website will be a triumph of sorts before leaving Natick.
“Writing and organizing thoughts and actually finishing something becomes really difficult with Parkinson’s because of cognitive impairments,” wrote Bittker. “So it’s my victory march to get this thing online before I move.”
Brouillard and Bittker held their support group’s in-person meetings for about two years before the pandemic forbade such face-to-face gatherings. Their venue was the Natick Community Center on East Central Street, where they would meet monthly. At their inaugural meeting, the two hoped and expected three or four women would attend, and were surprised when 17 showed.
“The response has been tremendous,” said Brouillard.
The group transitioned to “zoom” calls last year, the now ubiquitous video conferencing that the rest of the world has adopted during the shutdown.
The switch, as other organizations have found, has brought with it some much-valued benefits. The commute is gone, and the reach of the group has expanded beyond borders. The video version of the meetings have become so successful and well-attended, that Brouillard says they may adopt the format permanently.
Brouillard works out regularly at Natick’s Longfellow Health Club, a local gym where she can be found gliding on an elliptical machine and participating in yoga and pilates classes. Movement, she said, is essential in staving off the symptoms of Parkinson’s.
“Exercise is one of the best things we can do. Anything you can do to keep moving and not stop. All that core work and balance work is so helpful.”
Theirs is the only Parkinson’s group in Massachusetts for women only, Brouillard said - a niche she and her co-founder saw a need to fill. The group is promoted as being for those with young-onset Parkinson’s, but women of all ages are encouraged to join.
Brouillard said there are a number of reasons why they saw the need for a gender-exclusive group. If a woman has served in a caregiving role, that can make the loss of functionality particularly acute.
“There’s actually a lot of unseen symptoms,” she said. “People rely on you. It really can be disruptive of that role in our lives.”
Some symptoms of Parkinson’s can also be quite personal, things that many might feel uncomfortable talking about in a mixed setting.
“I’m still doing everything I need to be doing in my life,” she said. “It really creates that safe space.”
