How Did We Get Here?

I have been asked quite a bit to discuss my experience being diagnosed---as it usually is a LONG, inaccurate process.  I think in general my diagnosis was quicker, although it had a major slip-up along the way.  So here is my story--as accurate of a picture as my memory will allow.

October 2009

I began to notice some odd stiffness in my right forearm.  Suddenly, my free throw shooting was not the usual 80% it has been my entire life. I'm currently running about 40 miles a week and have also observed twitching and general weakness in my right knee.  I begin to see a physical therapist but other than adding some muscle in strategic spots, very little improvement.

March 2010

Watching Mad Men and suddenly I realize that my right hand has developed a slight tremor.  I chalk it it up to a stressful job and lots of coffee.

May 2010

I turn 30 and the tremor is increasing. The right side of my body feels a bit stiff and I begin to notice that I sometimes limp.   My regular physician thinks I might have pinched nerve or some damage in my shoulder/neck from athletics and he recommends me to a neurologist.  By the way, my doctor down in White Plains was Dr. Todd Friend.  Hands down the best family practice physician  in the country--every doctor since has been a disappointment.  It is like dating a supermodel who likes sports and red meat at age 30---where do you go after that relationship ends?

Dr. Friend, Excellent Physician and Surfing Enthusiast

June 2010

Just to recap, the disease is progressing a bit and I am concerned---the idea of having PD has crossed my mind for a millisecond but then I move on----old people catch that wave, not me. I should also add that we decide to start trying to get pregnant. Roberts' Men are famous for their ability to *cough* *cough* "continue the line" (it's a gift and a curse) and Rebecca is preggers within no time. 

So I see a general neurologist in Westchester and he follows his training: take bloodwork, focus on thyroid, MRI is an option, etc.  Then, as we're finishing up the first appointment, he flippantly states, "if I had to guess, I probably go with brain tumor but let's do some tests and make a follow-up appointment with me."  He then walks out of the room without even a goodbye.

Now the area of academia in which I work is not far afield from the individuals who make up the medical profession---there are large cohorts of truly brilliant people who lack the communication skill set that assists us in navigating day-to-day interactions. Many of these people are some of our greatest minds but simply do not know the proper verbal and non-verbal reciprocation to make a conversation (or break bad news).  I'm willing to give this neurologist the benefit of the doubt but he did mess me up mentally for sure. 

I couldn't get another appointment with him for almost 3 months and, all of that time, I figured that I was dying of a brain tumor.  I didn't tell a soul--not my pregnant wife, not my best friend in LA, and not even my soulmate (Mookie, my cat).  Let's just say that I have had betters summers.  Tests came back negative so the doctor referred me to a movement disorders specialist, Dr. Miodrag Velickovic. I suspect this first neurologist knew that I had Parkinson's but for whatever the reason, punted to Dr. V.

October 2010

My condition was getting worse---I had rigidity, right arm tremor, and, a brand new symptom, reduced arm swing.  Knowing what I know now, Dr. V probably diagnosed me as I walked into the room.  I went and saw him on my lunch hour and after a thorough diagnostic exam, we had this exchange:

Dr. V:  Mr. Roberts, it is likely that you have Parkinson's disease.

BMR:  Am I going to die?

Dr. V:  Absolutely not.  You die with PD but not from it.

BMR:  I know that I am going to have to begin taking medicine.  Will any of it make me lose my hair?

Dr. V:  (incredulous) Umm, I do not believe that hair loss is a side effect many have studied.

The conversation above is not embellished in any way: literally my first two questions had to do with death, and in absence of that, losing my hair.  I'm a shallow man.

Looking back on that appointment, a few things stick out.

The Benevolent Billionaire Bloomberg

•  I don't need a ton of bedside manner---I'm a Bloombergian tecnocrat by nature.  Give me data and statistical probability of drug efficacy and I'm all set.  Yet, understandably so, at diagnosis I needed to hear that I was going to be "all right" and Velichovic, who can be as empathetic as Vladimir Putin, hit the ball out of the park.  He gave me anecdotal stories of these YOPD individuals who had long careers and it gave me hope.

•  Man, getting a diagnosis like that is overwhelming but I was actually relieved. Keep in mind that I had just come out of a summer thinking that I was dying of a brain tumor.

•  Here's the crazy thing---I went straight back to work.  No processing of the information, no grieving over my altered future, and certainly no crying---I went right back into the office and finished out the day.

February 2014

Smash cut to today---I'm doing well and achieving, for the most part, at the same level that "Pre-Pd Bryan" did.  It hasn't all been roses---as I have written previously, the reaction you get when you reveal the condition can be challenging depending on the cohort. For me, some of my family certainly did not handle the challenge in the way I deem they should have and they have been perhaps the biggest disappointment. 

All in all, perhaps going straight back to work was telling because that is how I handled my diagnosis and that level of determination has not waned a bit.  The road to diagnosis can be a long one but maintaining a positive attitude and not losing your sense of self is key. 

Many of you reading this may be on the way to being diagnosed or have recently received the "official" news. My advice would be to fight like hell and keep doing the things that you value in life, because it can always be worse: you could have a brain tumor.