We do ourselves an injustice by just suffering through it. Life, that’s the it. Women, that’s the we. We are so busy juggling families, work, caring for elder parents and advocating for others that we forget to advocate for ourselves. And if we do not advocate for ourselves, who will?
No one will.
By taking care of ourselves, we are better able to take care of others. And those others are very important. By advocating for ourselves, we pave the way for others to advocate for themselves.
We started out as a group of women spanning the globe, from Nigeria, India, Ireland, Germany, Mexico and the United States. We came together to share our lives, our challenges, our victories and our disease. We would share our joys and frustrations on WhatsApp. We would look for a witness, a mirror to our own limits, our mortality and our co-existence through video chat on Marcopolo. And we would call each other to provide support and family through this progressive, degenerative and incurable brain disease that is Parkinson’s. Deep friendships were forged despite the physical distance that separated us. Our shared experience of living with disease knitted the bonds of our sisterhood.
Our conversations would often point to the absence of resources that speak to our experiences as women. There was no information on navigating our medications or disease with menstrual cycles. There was an utter void in research about how the fluctuations of hormones impact our well-being. The process was frustrating, scary and debilitating. The very cornerstones of what it means to be a woman and how to navigate as a woman was absent in our discussion with our neurologists and in the Parkinson’s literature. We must take our advocacy and our conversations about the experience of being female with Parkinson’s to our community.
We were frustrated by not hearing female voices, the female perspective, represented.
By collectively raising the issue all over the world, we can drive the need for better individualized treatment, for inclusion of women in research and for a broader understanding of women's needs in living with Parkinson's Disease.
We passionately believe that if everyone raises the issues of women, it will help drive the agenda for better management of Parkinson's disease, and the development of treatments to halt, slow and ultimately cure Parkinson’s Disease.