Like most who take on the role of caregiving it is something none of us ever imagine as part of our life nor do we prepare for. What makes my journey a little different is that I began my life as a caregiver for our unborn son even before he was born. My wife and I were a young married couple expecting our third child when early in the pregnancy our medical team performed an amniocentesis which led to an in vitro diagnosis of cystic fibrosis. It was purely a chance discovery, but knowing our son, Bobby, would be born with this disease changed everything for me, my wife and family, and certainly the life we had hoped to live. 

And, of course, at the time we couldn’t imagine that those changes would turn out to influence our life in any positive way. The medicines for CF back then were not as advanced as they are now, which meant that patients like our son lived with severe breathing impairments shortly after birth. CF causes a thick mucus  to accumulate in the lungs and along with the pathogens trapped within this mucus, it makes breathing difficult at best. My wife and I, and with the help of a respiratory therapist, spent countless hours each week pounding Bobby’s back to break up the mucus and improve lung functioning. From the onset our day was filled with chest PT, nebulizers and dozens of pills in order for him to stay as healthy as possible.  This was our life as a cystic fibrosis caregiver. 

This experience propelled my wife and I into overnight CF “experts” and without me realizing it formed the direction for my professional life. I became an ardent patient advocate, fundraiser, and disease spokesperson and followed a career path that allowed me to pursue positions that would influence the development of CF medicines being created in the local biotech labs. My path went from local Dedham, MA politician to state legislator, to valued life science resource to Massachusetts Governor, Deval Patrick, and ultimately into the vision seat at MassBio.  I am currently a lead of the life science practice at JLL.

Today, I am happy to say that with the help of medicines created to treat cystic fibrosis, and the dedication of my wife, our son, Bobby, is thriving as a healthy 22-year-old. He graduated from college and has embarked on his own professional career. Funny how things happen when you put someone else’s life and well-being before yours.

More background on Bob can be found here.

It is the one day that will forever stand out among all the days in my life. Nearly two decades ago, my wife and I walked into a Boston hospital for a meeting with a renowned neurologist. My wife was experiencing unexplained leg tremors and we needed to find out the cause. Was it general fatigue or something more serious? At that moment, we were positive that it was something marginal. 

We walked out of that meeting with the knowledge of a Parkinson’s diagnosis. A disease of which we had little knowledge. We were told by the neurologist that Parkinson’s is a progressive illness, how it may present itself as the condition advances, and that there are several effective medicines available to treat the symptoms. But no mention of a cure. 

What we knew of the disease at the time of diagnosis has changed very little over time. It was very treatable in the early stages and my wife’s regular adherence to her medications kept Parkinson’s at bay; allowing her to live her regular life. As the doctor told us, it is a progressive illness, but what we found out was Parkinson’s is also unpredictable and operates on its own timetable. For the first 10 years after her diagnosis there was nothing out of the norm other than a few bumps in the road as the disease progressed. This also meant that my life was smooth, although as caregivers we are taught to be ever watchful for telltale signs of disease impact and any worsening of symptoms or side effects.

For a Parkinson’s patient that can mean physical decline and/or cognitive impairment; both nuanced and overt. She began to falter when walking and on occasion would fall or be unable to walk momentarily. This is called “frozen gait syndrome” which is a temporary, involuntary inability to move. Not all people with Parkinson’s experience freezing episodes, but those who do have a greater risk of falling. Usually, freezing only lasts a few seconds, but it is one of the more frustrating and dangerous symptoms of Parkinson’s.

One of the cognitive side effects of taking Parkinson’s medications on a longer-term basis, can be the onset of hallucinations or delusions. What becomes frustrating in this instance is that doctors cannot put their finger on the cause and treatment usually involves adding another medication to an already large number of daily pills required to treat this disease. Plus, the medications are usually some forms of anti-psychotic drugs. 

What I have learned from this experience is that Parkinson’s is a punishing illness that offers little long-term relief or hope of a reversal. It has also impacted this once-vibrant woman of her ability to walk, think and speak clearly. It will also shorten our time together as a couple, which is the cruelest cut. It remains the centerpiece of our life and continues to shape the remaining days ahead.