If we live long enough, we will all eventually be affected by diseases that medical science finds incurable, at least for now. And we all should be asking – why aren’t we putting more effort into finding cures?
This was brought home to me very powerfully this year. During the last four months, both my wife of 61 years, Suzanne, and my youngest brother, Craig, have succumbed to two of those diseases. Sue died after a long struggle with Parkinson’s disease; Craig died as a result of ALS, often known as Lou Gehrig’s disease, after the famous ballplayer whose life and career were ended by it.
I plan to discuss Lou Gehrig’s disease in a future column, but today, I want to concentrate on Parkinson’s Disease, which is devastating, extremely common -- it affects more than 200,000 Americans every year -- and, despite the best efforts of actor and sufferer Michael J. Fox, far too little understood.
The shortest definition of Parkinson’s is that it is a progressive nervous system disorder that affects movement, and often causes tremors. Nerve cell damage in the brain causes dopamine levels to drop, leading to the symptoms.
Parkinson's often starts with a tremor in one hand. Many who have it eventually experience slow movement, stiffness, and loss of balance. Eventually, advanced stiffness in the legs can make it impossible to walk or even stand. As the disease progresses, patients can need around-the-clock assistance to prevent falls.
In my wife’s case, the diagnosis didn’t take long. Her family physician noted it first. When he told her what he thought it was also told her not to look the disease up on the internet – which turned out to be sound psychological advice.
We next went to the neurology department at the Cleveland Clinic, where they tentatively confirmed that diagnosis, and medications began. We also saw a neurologist at the University of Toledo Medical Center, and finally a neurologist at OhioHealth, a non-profit hospital system in Columbus.
None gave us any hope -- they just gave Sue pills and more pills.
But what is truly devastating is not just the loss of motor coordination; as many as half of all those with Parkinson’s experience confusion, hallucinations, and delusions. Hallucinations occur when you see things that aren’t there. Delusions are when you believe things that aren’t true, even when you have been presented with evidence that your belief is wrong.
Dementia is also common, eventually affecting as many as 80 percent of those who have Parkinson’s, and to top it off, the side effects from medications given to treat some of these things can outweigh the benefits. Nor is every patient the same. Michael J. Fox was diagnosed with it at 30, far earlier than most. My wife’s symptoms weren’t like much like his at all.
The effects on Sue’s personality were the most devastating. She went from being a vibrant, fun-loving woman in late middle age to someone who could be mean, aggressive, and sometimes even a danger to herself and others.
As a professional chemist, I spent a lot of time trying to find out what we really knew about the medications she was receiving, how they were used by the body, and what they accomplished.
I also wanted to know if there were any biomarkers, which are chemical or biochemical products found in body fluids that would indicate something about the disease. Appallingly, there was little or nothing of consequence that I could find.
As the months went by, and we continued to visit neurologists and other specialists, I felt I was helplessly watching my wife gradually disappearing. I began to fear what we had been told about her illness wasn’t right.
But I didn’t have a better answer, so we felt was had little choice but to act as though the diagnosis was correct.
Think about being in that position. Something’s dramatically wrong, and your loved one is suffering. You’ve been given medicine to treat those symptoms; but it doesn’t seem to be working that well.
You can’t help wonder if their diagnosis might have been wrong, What if the symptoms they are treating were from something completely different.
Despite Michael J. Fox, Parkinson’s is rarely diagnosed in young people, and so we mainly think of it as a disease of old folks. Perhaps we are more willing to accept it because seeing old folks bent over and shuffling is embedded in some ways in our mental DNA. Plus, the pressure groups who are trying to get more research and action on such diseases aren’t as vibrant, noisy and popular as some others. It isn’t that hard to get people excited about getting athletes or actors to wear pink to advertise the need for more research money for breast cancer.
Who wants to keep a shuffling old man or a bent over old woman alive? Well, I do – and, dear reader, if you live long enough, you will too.
There’s no doubt that research into Parkinson’s has been sorely neglected; the treatments they are recommending now were first used in 1967.
Last year, the National Institutes of Health devoted a paltry $130 million to Parkinson’s ,and much of that was probably spent on clinical treatment not research. There are 14 strategic nuclear-powered submarines in the American arsenal – the ones that can fire nuclear missiles. They each cost $2.8 billion to make and millions every year to maintain.
And, of course, they can never be used, unless we have a world-ending nuclear war. So ask yourself this:
Are the nearly one million Americans who currently suffer from Parkinson’s not worth the money we spend on even one essentially obsolete weapons system?
Let’s face facts: If we really want to make America great again, then we need to start by getting our priorities straight.
We need to establish new national priorities, which would include new directions for the medical community and for medical research. We need someone like Bill Gates or maybe the retiring German chancellor Angela Merkel, herself a chemist, to lead a major world effort to find treatments for complex diseases. We need tough bright people to stand up to those who fund bloated Pentagon budgets and say, in the words of Bob Dylan, that the times are a’changin.
We need to let our leaders know that keeping Americans alive through medical research and development is a lot better use of our money.
Research is hard and uncertain, and we might not find all the answers right away, even with an unlimited budget. But it is high time to try.
President Biden will soon appoint a new director for the National Institutes of Health, and I want that director to be an aggressive lobbyist for human beings; not just another Nobel-prize winning geneticist. We need someone like former Surgeon General, C. Everett Koop, who by the power of his voice made the anti-smoking argument worldwide.
One thing is certain: If the pandemic taught us anything it should be that our medical research community needs to make us more prepared.
For years, those funding science research in this country have had a post-World War II mentality focused on weapons and bombs. It’s time to start putting the health of Americans first -- and we need a health czar who will fight for funding for us as vigorously as the admirals do for submarines.
Douglas Neckers is an organic chemist, and founder of the Center for Photochemical Sciences at Bowling Green State University; He is also past chair of the Robert H. Jackson Center in Jamestown, N.Y. Read his work at 3dscienceblog.