A friend indeed

When I embarked on my journey to form the Prevention of Lower Urinary Tract Symptoms (PLUS) Research Consortium in 2015, I was introduced to a woman, a MD/PhD in Preventive Medicine with a huge amount of experience in prevention of heart disease. We met a few times and she “schooled” me on the basics of prevention research and it was clear I had much to learn. Our personalities were very different. She was approached things as an epidemiologist/scientist and I approached things as a clinician/surgeon. With a few million dollars and 50 scientists to lead, I could only think of one person that I thought could be help me lead this group, and it was her. I asked her to come out of retirement to be the Steering Committee Chair (SCC)

Unbeknownst to me, she had received a diagnosis of Parkinson’s disease several years earlier. She was well controlled at the time, but work stress was a challenge for her. I was thrilled when she agreed. She lived near me and we would have phone calls and meet weekly at a coffee shop to discuss everything.

The first year of PLUS was “somewhat controlled” chaos and I was constantly on the phone with the SCC trying to figure out how to manage the current crisis. She was my security blanket as we forged the development of a new area of science – bladder health and prevention of bladder conditions in women. I think we were both surprised at what a monumental task to get 50 researchers to align behind the need to build a good scientific foundation before doing a study.

Somewhere along these months she shared with me that she had Parkinson’s disease and that the in-person meetings every 3 months were causing her stress. We tried some mitigating tactics. I appoint a SC Co-Chair and while helpful, after a year and a half, she decided it was just too stressful for her. I supported her in her decision to take care of herself, absolutely. No one in PLUS aside from me knew about the Parkinson’s disease. I missed her support and guidance immensely but knew she made the right decision and she had gotten the group headed in the right direction. This was 2016. During the time while we were often violently disagreeing we formed a friendship.

Our spouses had both been military pilots in the Vietnam War era. We began to have dinners and do movies and they shared their beach home with us. I decided to start cycling in 2017 and her husband was cycling at the time because his knee did not tolerate his first love – squash. He became my cycling partner. He is stronger cyclist than I am. He has always been very patient as my strength and endurance built and we have had some wonderful rides around DC and some organized longer rides.

We had a great ride again today. I always try to get a photo with each trip. Today we stopped in from of this beautiful mosque on Massachusetts Avenue.

The Parkinson’s disease has progressed rapidly over. the past 3 years since I left DC. It is a cruel disease and seeing my friend suffer so much with not only the movement aspects of the disease but with severe anxiety is heartbreaking. A marriage of equals for 42 years – both using hyphenated last names; raising 2 children with shared household and parenting responsibilities, has evolved out of necessity to a caregiver and dependent relationship. No one wants this but there is no other option. She is at Stage 4 out of 5 for Parkinson’s disease. It seems to be progressing rapidly in spite of great medical care and detailed attention to her medication. Her manifestations are anxiety and intermittent cognitive impairment.

.I had dinner with them tonight. I used the opportunity to tell her how much I loved her and how important she had been to laying the foundation for PLUS. I could not have survived the turbulence of the first year and a half without her counsel.

If you haven’t watched Micheal J. Fox’s documentary, “Still” about his journey with Parkinson’s disease, you should.

Life is not fair!!!!