November Meeting Notes–The Women Warriors Speak Out

At our November meeting, we had an open discussion about our individual experiences, challenges, and achievements as women living with Parkinson’s, and also shared some of what we are thankful and grateful for.

One of our members spoke of her gratitude for her family and for the good advice she’s been given by a friend in the group. She expressed how she loves our meetings and that it’s good to get information from people with real experiences, especially since doctors’ times are so limited. “I think of us as Women Warriors,” she said.

I love that term, Women Warriors, and so I’m going to use it, just like I’ve used the information, experiences, and insights this amazing group of women have offered over the years to arm me on this bumpy road.

The sentiment of gratitude for our group–the support, sharing of information, and friendships it has and continues to provide–was echoed by most, as was ongoing gratitude for our founder and group leader, whose vision and personality infuse the meetings. Thanks were also expressed for slow progression, feeling at a stable point in the disease, finally having medication adjusted so it’s working well, sleeping at night, the ability to travel, cameras that correct for shaking, and having a good day, one member saying she hasn’t felt this good in a long time.

Members talked about gratitude for husbands (one who “changed his life for me”), siblings who live close-by, attentive daughters, joyful grandchildren, friends who have stood by them, and wonderful neighbors (who due to their own aging and health issues may have limited ability to help, but help anyway). One member said she was grateful for all the people who stop and help–holding the door for her, assisting her in and out of the car. Another, also thankful for the help of strangers and neighbors, added tearfully, “Maybe my purpose in having Parkinson’s is to give other people the opportunity to help.”

One of our longtime members, diagnosed fifteen years ago (the longest in the group), expressed gratitude that she is still walking. “You get through this disease by being positive, even though it feels impossible,” she said, adding that sometimes she has a bad day, but it only lasts a day. Another member shared that once a month she has a quick cry–maybe five minutes–and it helps her stay positive. Another agreed that everyone needs to have a positive attitude, especially as we grow older. She looks to others for inspiration–like Jimmy Carter, diagnosed with brain cancer in 2015 and who recently, at age 95, showed up at church with a black eye and a fractured pelvis after taking a fall. “It’s nice to have examples of people who keep on going,” she said.

If a theme emerged from our sharing, it was that Parkinson’s is not our whole life. It’s a huge part, yes, our symptoms and dyskinesias exacerbated by stress of any kind and medication fluctuations and failures, but we juggle the disease day-to-day with everything else that crops up. For some, it is other health issues that take precedent so that, as one member put it, “Parkinson’s is the least of my worries right now.” For others it is health issues of husbands or adult children. One longtime member talked about her daughter’s breast cancer diagnosis, the stress of driving her to and from the hospital for various tests and procedures. She had to leave early to pick her up from the hospital where she’d taken her for a bone scan. She didn’t want to miss the meeting entirely, she said, putting on her coat amid her stress-worsened dyskinesia and our words of reassurance and support.

As shared at the meeting, stress also comes from:
* Husbands with new jobs, hormonal teenagers, sending your teens off to college, and adult children moving back home;
* Persistent and challenging health issues (other than Parkinson’s);
* Interruptions to your usual exercise routine while traveling;
* Selling, packing up and moving out of one home and buying, unpacking and moving into another;
* Surgery and recovery from surgery, which among the members at the meeting included a cardiac procedure, knee replacement, hip replacements (one member had three on the same hip in two weeks!), and hand surgery. The hip and hand surgeries were necessitated by broken bones as a result of falls; both required multiple surgeries to correct. The knee replacement went wrong from the beginning.

One member spoke of the feeling of achievement in finally finding a doctor who can help with her longtime, chronic eye troubles; another the relief of her adult child finally, after a year of living home, finding a job and moving out. The recipient of the knee replacement was happy she’d found a new orthopedist trying to determine what went wrong the first time, offering hope of corrective surgery, enabling her to walk again. A recently diagnosed member, single and living in the same house for thirty years, said she felt daunted by the thought of having no primary caregiver and the high cost of living around here. Many of her close friends have moved away and she is not positive she will be able to afford to stay in the area either.

Experiences were shared and questions answered about using the care coordinator services offered at no additional cost by some insurance companies to people with chronic illnesses. Anthem provides a nurse for subscribers to talk to; Aetna’s Best Doctor program offers a second opinion. The members who use these services reported positive experiences and no negative effects on their care and coverage with their health care providers. When a newer member complained that a nurse rather than her doctor called her back whenever she left a message, everyone with the same doctor advised her to use the portal to email her questions, assuring her they always got a fast response.

“I still have Parkinson’s,” one member wryly stated when it was her turn to talk. Humor helps. Gratitude helps. Information and resources help. Having each other helps. Champions in our shared struggle, we truly are a gutsy group of Women Warriors.