People ask me what’s it like to have Parkinson’s… well, to be truthful, it’s a pain and inconvenient. No one should go through this. It will disrupt your life if you let it. Someone once defined it perfectly. My blog is called the Adventures of MAK & PD….. sounds like two comic characters: MAK, a young girl and PD, her annoying puppy who consistently wants to jump up and annoy her, sometimes more than others and sometimes at the most inconvenient of times. To me, that explains my life with Parkinson’s to a T.
I cannot allow myself to dwell on what’s ahead, I know it’s not good but will fight to slow down the progression. I climb because I can, I live life to the fullest everyday because I can, I do not judge, everyone has their own mountain to climb, I fight to keep the memory of the 49 because it’s the right thing to do.
This Fourth of July weekend, we celebrate America’s independence and remember our forefathers, who envisioned a country in which anyone — with hard work and tenacity — could achieve anything they set their minds to.
This weekend, I will also remember three exemplars of this American toughness and achievement: Coach Pat Summitt, who died last week from Alzheimer’s disease, champion Muhammed Ali, who died in June from Parkinson’s disease and baseball great Lou Gehrig, who gave his memorable farewell speech after being diagnosed with ALS on July 4,1939. These three American heroes’ early deaths from the closely related brain diseases Alzheimer’s, Parkinson’s and ALS must spur our nation to action. These diseases collectively known as neurodegenerative diseases are fatal, untreatable and taking America by storm.
Neurodegenerative diseases comprise the largest unmet global health crisis of our time and it’s getting worse. In fact, unless we do something by 2025, 1 in 25 Americans will have been diagnosed with Alzheimer’s, Parkinson’s or ALS. If we do not stop these diseases by 2050, our nation will buckle under the weight of the estimated $1.1 trillion in public costs associated with caring for the projected 15 million Americans with these disastrous brain diseases. You or someone you love will be struck down.
Summitt, Ali and Gehrig lived and breathed American strength and perseverance. Summitt led the Tennessee Lady Vols to 1098 victories as the coach with the most wins in Division 1 college basketball history. Ali was a three-time heavyweight boxing champion and Olympic gold medalist. Gehrig played 2130 consecutive games over his 14 years as a Yankee and earned the nickname “The Iron Horse” for his fortitude. And yet they, and innumerable tough, independent Americans just like them, were killed before their time by their brains gone awry.
In 2016, the age of Viagra and Snapchat, it is inexcusable and downright un-American, that every day millions of Americans lose their freedom — their inalienable abilities to move, speak, swallow and remember — to neurodegenerative diseases. Summitt, Ali and Gehrig all waged war on their diseases, raising critical awareness and funds to battle these scourges. And now, to stop them once and for all, we must pick up where our heroes left off.
There is good news: through cutting-edge, aggressive science, we are learning more about the brain. Leading researchers now agree that Alzheimer’s, Parkinson’s and ALS share key cellular death-and-rescue pathways. “Dramatic progress in human genetics has identified abnormalities shared by patients with ALS, Parkinson’s and Alzheimer’s,” says Tom Maniatis, PhD, the Isidore Edelman Professor of Biochemistry and Molecular Biophysics at Columbia University. “This knowledge may lead to the development of drugs capable of treating all three.” Science is coming closer to understanding — and stopping — these diseases, but until we can effectively treat them, we have to redouble our efforts.
Every single American will be affected; we must fight as one. During this election season, each and every one of us must tell both Republican and Democratic candidates — from local officials to Presidential hopefuls — that America needs a plan to stop neurodegenerative diseases and that we demand their action. In this pivotal moment we must support crucial research, through dollars, community events and social media. We can stop these diseases — but we must raise an army.
Summitt, Ali and Gehrig were powerful generals in their artistry, achievements and activism. This weekend and every other weekend, let’s take their lead in a fight for our lives that, together, we can win.
