Research is beginning to prove what the medical community has long suspected: that women experience Parkinson’s differently as it relates to diagnosis, symptoms, progression, treatment complications and care
Allison Willis, M.D., M.S., co-lead of Women and PD TALK
At 10:00 pm, the husband looks at his wife and says “it’s time to go upstairs to bed.” And he goes upstairs and gets in bed. 45 minutes later, his wife finally comes upstairs. He asked her what took her so long. Her response: I had to clean the kitchen, put the dirty clothes in the laundry, walk the dog, make sure all the doors and windows were closed, check on the kids and on and on……..
Yes, there are definitely differences in Men and Women. Women have historically been nurturers and caregivers. They take care of their children, their spouses, their homes. And many of them are still working. When diagnosed with a disease like PD, their entire support system is turned upside down. It can be difficult to let someone else be THEIR care-giver.
In the last few months, as co-lead for the Parkinson’s Foundation’s Women and PD TALK , I have been talking to Women with Parkinson’s about issues facing them as women with a chronic illness. As mothers, and as lifelong caregivers, many women have never even thought to ask for help when they need it. It often takes longer for women to receive the diagnosis of Parkinson’s Disease than it does for men. Many are told that it is in their head. They are often told that they are depressed, especially if they are younger. Most women go to their doctors alone. Many have shared that they go to therapy, alone. They often go to support groups alone. One woman said that she stopped going to mixed support groups because most of the women who came were care-partners and assumed that she was, too. She felt that she could not get the support she needed from a mixed group.
Many women with Parkinson’s seek out support systems that include other women with PD. After all, who else would understand what they are feeling? They need the camaraderie and friendship that Women-only groups can provide.
One thing I noticed last year when I attended the World Parkinson Congress in Portland, was that the overwhelming majority of the men with Parkinson’s were accompanied by their wives. The number of spouses who accompanied their wives who have Parkinson’s was far fewer.
The interesting thing is that most men fare much better than women as the disease progresses. Is this because they have someone that will take care of them and advocate for them, even if they don’t ask for help? Many of the women with PD that I spoke to are now care-partners for their husbands, which means that they are not getting the support they need at home. This is unfortunate, because being a care-partner can take much more energy than these women with PD have to give. And they suffer because of it. Unless they can get help in their home, they often do not have the time to exercise daily and take care of their other needs. I am sure that the stress of being a care-partner must take its toll as well. Women who live alone have their own difficulties in accessing adequate care.
What is the solution for these women with Parkinson’s? Are there differences in treatment? Care? Are their symptoms different than men’s? Why does is take longer for women to get diagnosed? We will be exploring these issues and more at the Parkinson’s Foundation’s Women and PD TALK forums that will be taking place in 10 communities around the country in the next 6 months. Stay posted for more information.