Alongside their symptoms, women under the age of 50 with Parkinson’s will have to manage periods, and later, the menopause. Emma and Sally share the challenges they face as younger women with the condition.
Sally is 51 and was diagnosed with Parkinson’s seven years ago at the age of 44. She says: “I’ve met many people with Parkinson’s since I was diagnosed but no one to share the specific challenges that Parkinson’s can have for younger women.”
Thinking about appearance
“I find it increasingly difficult to express myself through my appearance,” says Sally. “I used to enjoy shopping for clothes but now find this an ordeal. How easy a garment is to put on or take off has become a priority over what is fashionable. It is becoming difficult to apply makeup or to manage aspects of self-care and personal hygiene.”
Impact on the menstrual cycle
Emma was diagnosed with Parkinson’s two years ago, in her early forties. At 43, she says: “So much of the expectation around me is that I’ll cope”. However, her menstrual cycle is a monthly challenge.
“Every four weeks, my Parkinson’s symptoms are aggravated. In particular, my tremors can escalate and sometimes it’s like I’m jogging just sitting down!”
Her balance can also be affected and she has trouble multi-tasking. “I also have fatigue and I struggle with this a lot more during my monthly cycle. It’s particularly difficult to get a restful night’s sleep.”
On an emotional level, she feels that her anxiety is heightened during her period. ”My family are supportive but put any regular worsening of my symptoms down to ‘parky’ days rather than being connected to my menstrual cycle.”
Parkinson’s and the menopause
At 43, Emma is beginning to experience some menopausal symptoms. “I am very concerned by what impact this period of my life will have on my Parkinson’s. There seems to be very little research in this area about what might be a supportive and helpful approach through these changes.”
Sally started the menopause at the age of 46. “It became difficult trying to work out whether the symptoms I was having were related to Parkinson’s or the menopause.
“My GP suggested I try Hormone replacement therapy (HRT) in the hope that my symptoms would not fluctuate as much but unfortunately the treatment made the side effects from my Parkinson’s drugs worse, so I have stopped taking it now. Last year I was diagnosed with osteoporosis, a condition often associated with the menopause.”
Seeking healthcare advice
For Emma, whenever she has brought these issues up with healthcare professionals, she feels brushed aside. “The attitude seems to be that they are ‘women’s troubles’ and I just have to put up with them.”
“Obviously this is frustrating. The fluctuations I have in my symptoms around my period challenge my quality of life, which is already a struggle to maintain when you have Parkinson’s.”
Sally has also asked questions about the relationship between hormonal changes and Parkinson’s symptoms. “While they agree there is probably a link they don’t have the knowledge or experience to offer any constructive advice or treatment.”
“I hope that in time, as more women share their experiences, this will change.”
Parkinson’s affects millions of women across the world but their stories and experiences have been less well represented and researched than their male counterparts. Thankfully this is changing and we are beginning to understand that the female experience of the condition may differ in a range of ways. These important differences could be vital in developing treatments, care and support that meet the needs of everyone with Parkinson’s.
What other differences are there between the sexes? Find out in our Research blog.