You May Have The Upper Hand For Now, But You Will Not Win
Today is my birthday. There is one thing I wish for more than anything, and that is for my mom to come and celebrate with me the way she always does. For her to run around and play with my children the way she always does. For things to be as they always have been - but things will never be as the same. Neurodegeneration has put an end to that.
Neurodegeneration has been a large part of my research for many years. This year, I have unwillingly entered a new role. All of a sudden, I find myself in the front row, watching neurodegeneration and its ruthless progression. From this position I can see all too clearly how the disease relentlessly attacks my mom’s motor neurons. With no compassion, her ability to move is slowly taken from her. And I know too well what is on the horizon.
Staring into the face of the beast called neurodegeneration , completely helpless and full of fear is not what I want. Nor what anyone wants, and this is something I share with many of you in the Parkinson’s community. From my professional understanding of how neurodegenerative diseases affect the brain, I am now becoming familiar with how they affect the individual, their family and friends. But as it progresses, I am slowly building strength. Neurodegeneration may have the upper hand at the moment, but we will eventually win. I know it.
We will win because we stand united. Each individual that is fighting against neurodegeneration is joined by family and friends, scientists looking for cures, clinicians, nurses, physiotherapists, occupational therapists, speech therapists, care givers, funding foundations, patient support groups, and scientific societies all over the world. The list is long. Together we are a community. And by working together, we will eventually win the war.
Many of us have several roles from those I have listed. My colleagues and I work every day to understand how these diseases arise and progress, in order to develop better treatments and eventually cures. At the same time, many of us are also personally affected by the beast known as neurodegeneration.
I struggle with reconciling these two roles. All I can do right now is to keep them separate. When I am with my mom, I am her daughter. When I am at work, I am the scientist.
For now, I can promise you that my colleagues and I, all over the world, do everything we can do bring new treatments to you. My research focus is on stem cell based therapies for Parkinson’s disease, which is a competitive field - but we do not compete, we collaborate. By working as a team we can attack each question better than when working on our own. We have joined forces as a global organization called GForce-PD – whose aim is to share our experiences and knowledge in order to move forward to clinical trial with the safest and best stem cell therapy we can. By doing so, we hope to bring more effective treatments in an accelerated pace.
Before neurodegeneration came into my personal life, I would always come away from interactions with people with Parkinson’s with a new passion and drive. Now I draw strength, inspiration and resilience from our community to keep striving forward – both personally and professionally.
I already look forward to the next WPC meeting in Kyoto. I will be there as a scientist and although I am not ready to discuss my personal experience in public, you should know that I always gain strength and determination from these unique meetings where the Parkinson Community meets on a global arena.
Malin Parmar, PhD presented at the Fourth World Parkinson Congress in Portland, Oregon and the Third World Parkinson Congress in Montreal, Canada. She currently serves as a Professor of Cellular Neuroscience at Lund University.
Ideas and opinions expressed in this post reflect that of the authors solely. They do not reflect the opinions or positions of the World Parkinson Coalition®