Initially, the biggest challenge was finding the right balance between the early symptoms of the disease and the adverse consequences that inevitably follow from the medications used to fight those symptoms. For those who havenʼt lived with it, the consequences of PD itself are stiffness and freezing (dystonia), while the uncontrollable body movements (dyskinesia) that you often see are actually the result of the medications used to treat the illness. The gold standard medication is levodopa-carbidopa—and unfortunately has been so for decades—but myriad other medications are used to supplement and support its functioning.
Some can be helpful; others have severe adverse consequences and must be discontinued. Getting this right involves endless visits to the neurologist, phone calls to the doctorʼs office, and sometimes pulling over to the side of the road to deal with intense nausea. In the early days, my wife and I consulted not only with our local neurologist (who we adore and who has been taking care of my wife since making the initial diagnosis) but also with some of the recognized leaders in the field of PD research at Columbia Presbyterian Hospital and the Whitehead Institute.
We knew the disease was progressive and degenerative, but we hoped against hope that some medical breakthrough would halt the otherwise inevitable decline. Despite some early encouragement from experts that raised both our hopes, that was not to be, and my wifeʼs health declined—slowly at first, over many years —then with increasing speed and severity. A number of years ago, after her PD had progressed to the point where walking and balance were a challenge, she fell one evening in our home.
Perhaps it was wishful thinking on my part—a desire to maintain whatever little normalcy we had—but I initially thought her fall was not serious. I was totally wrong. She had fractured her pelvis in multiple places and spent ten days in the hospital recuperating.
During this period, I learned that being a caregiver means being an active and vocal advocate. While her doctors and nurses were talented, dedicated, and caring, the system is broken—so you need to speak up, sometimes loudly, to make sure your loved one gets proper and timely care. One of the most difficult decisions I had to make followed shortly after her release from the hospital and discharge to a rehabilitation facility.
I was fortunate to know someone in a related field who was able to make a call and get my wife admitted to one of the best rehab facilities on Long Island. There were facilities closer to home, but I was happy to drive an hour each way to get her into what I believed would be a much better setting for her recovery and physical therapy. I left her that first evening with trepidation but also with hope, satisfied that I had made the best decision possible.
The phone rang very early the next morning. It was my wife, literally begging me to get her out and take her home. I jumped in the car and began the hour-long trip to the rehab facility.
As I drove east on Long Island, I pondered what to do. There is really no one to ask—no one who knows your wife as you do, no one who knows how strong you are or what you are capable of—not even you. When I arrived and saw her, I did something I never thought I would do: I signed her out AMA—against medical advice.
I had always thought that was something only uninformed people did. But I realized that sometimes you have to dig deep inside yourself and make the hard decisions that you know are right—the only ones you can live with. I took her home, arranged for home physical therapy, and cared for her as best I could.
Over the ensuing weeks she slowly healed, and I learned a lot about myself and who I want to be. It is agony to watch your life partner lose piece after piece of herself. Her independence was taken from her, along with her ability to write, then to speak clearly, then to walk without assistance—and finally to walk at all.
If that were not enough, her short-term memory faded, then largely disappeared, followed by the disease attacking her cognitive abilities and the very essence of who she is. It is exhausting, debilitating, and soul-crushing to be incapable of stopping the diseaseʼs progression. Another difficult decision I faced was how much to share with our three sons.
There was a large part of me that wanted—and still wants—to spare them the daily worry, anxiety, and sadness of their motherʼs decline. But they love their mom, want to be there for her and know what is going on. I have also realized that I desperately need their emotional support—and thankfully, they desperately want to give it.
The emotions you experience as a spouse and caregiver defy easy description. There are times of disappointment, knowing the future you envisioned together will never be. There are hours of deep worry and silent despair punctuated by moments of frustration and even anger.
There is a lot to manage. It is brutally hard. Above all else, remember that your loved one is not at fault for their condition.
As stressed or overwhelmed as you may feel by the responsibilities forced upon you, your partner is suffering from the loss of any ability to lead a normal life or interact with the world as before. They are likely depressed and scared as once-effortless skills—eating, dressing, writing, talking—diminish, leaving only memories of earlier and happier days. Care and protection can be misinterpreted, and you need to work hard and creatively to help your loved one maintain as much independence and self-reliance as possible.
Your patience will undoubtedly be tested. Dig deep for love, understanding, and the ability to provide emotional support. And finally—take care of yourself.
You may feel strong enough physically and emotionally to handle all of it. But you are not. That does not make you weak.
You need to focus on your own health, well-being, and—dare I suggest—happiness. It is crucial not to get cut off from family, friends, business associates, and whatever work gives you meaning. You are a caregiver, and you do that with enthusiasm and a sense of purpose.
But that is not all you are. You need and deserve to live your life to the fullest extent possible under the circumstances. I tell myself this every day—to take care of her, yes, but also to remember to live.
The days of your life are your most precious possession. Embrace them. Grab all the meaning and happiness you can.
If you are a caregiver of a loved one, I wish you and your loved one all the very best that life can provide.