The Art of Innovation and Inspiration through Science

I am in the innovation game. I am a media researcher who is currently using drones to help individuals in wheelchairs. I am preparing a different research study using augmented reality to help non-verbal autistic children. I am paid by Ithaca College to see things differently.

Every so often I hear of an initiative that not only excites me but inspires me: to think bigger, go further, trust the unknown. The idea that the researchers at the Michael J. Fox Foundation are willing to try an experiment at the International Space Station is the type of science that can inspire an entire new generation of researchers. Please see the video below:

Science is a tough business and tolerance for risk is needed to be successful. Failure is a part of everyday life (a feeling shared by fans of the NY Mets). Will this initiative succeed? I hope so but if I look at the statistics, odds are that it won't---but in the end, it may be the process that matters most.

As someone who was diagnosed at age 30, I approach my life with both optimism and realism. We are too smart, too motivated, too innovative to not unlock this disease but will we win the game in my lifetime? Often times I am not sure of the answer and then a research study like this comes along and I am convinced we are capable of amazing outcomes.

When I learned that the Center for the Advancement of Science in Space would be teaming with MJFF, I was not the only one in my house who was inspired. My six year old daughter--who is mainly interested in ballet, the Mets (brainwashing: complete), and perfecting a dance she has created called "The Cat Boogie"-- has taken a large interest in the research. Science has become exciting and interesting to a child (and I am confident that she is not the only one) and for that reason alone, this initiative is already successful.

By their participation in this space research, the Michael J. Fox Foundation has inspired me to go further in my own efforts: fundraising, participating in clinical trials, engaging other patients. Will this science yield results? Well, looking at the change in my daughter I think it already has but to quote a slogan from the Amazin' Mets: Ya Gotta Believe.

All Eyes on Me: Public Speaking with Parkinson's Disease

Hey there, my friend. Things have been crazy since I last posted mainly due to the cyclical nature of higher education. Whenever a new academic year starts, you are presented with challenges and opportunities that you just can't anticipate. It is similar to living with Parkinson's disease, you may know on a given day you will be symptomatic but you may not know what those symptoms will be.

As you are aware, I like to challenge myself so even with the hustle and bustle of a new year beginning, I also agreed to do two major speaking engagements. One was for our friends at the Michael J. Fox Foundation and the other was to reprise my role as host of "Park Tank!"

Dave Iverson typically hosts/moderates/dominates the Partners in Parkinson's events. He is a master journalist and interviewer but due to a prior commitment, could not host the PIP event in Houston. I was asked to pinch-hit and, with the keen realization that no one can actually replace Dave, I said yes.

Roberts with Dr. Leverenz of the Cleveland Clinic

Perhaps a week after I agreed, my usual wave of panic hit:

• It is a long day---do I still have that endurance?
• How hard can it be to digest the latest advances in neuroscience?
• I'm a communications dean---do I have any real skill set left?
• What if I say the wrong thing and a fight breaks out which halts all funding to PD research? That day in mid-September will be forever known as, "The Day Parkinson's Research Died."

Ok, so I'm a bit dramatic but anxiety is the fuel for success. I dedicated myself to being well prepared and the day went off fairly well. Houston is a really great town for a more holistic approach to PD treatment and the people I met with were truly inspiring. 

My takeaways were I still have the endurance left to host large events and my jokes are better than ever! (well, one out of two isn't bad)

Next up: Park Tank! Park Tank is where students pitch an idea for an online business, a hot show, or exciting film concept to an alumni judging panel and a live voting audience. The "sharks" or judges consisted of executives from Showtime, ESPN, and the NBA along with an expert in investment and another individual who runs a successful business incubator.

Since this was live TV, I had different considerations:

• I need to hit my marks consistently while keeping the show running on time.
• We went live at 4:30 pm---I needed to remember to take my medication at our 3rd commercial break.
• My monologue was killer so I felt pretty good there.
• While the stakes were not as high as the PIP event, I still wanted to do a good job.

The winners of the 2nd Annual Park Tank competition

Other than one major bonehead mistake---I threw it to commercial a segment too early---it went off well and the students and judges did an amazing job. Both hosting gigs reminded me to not quit my day job.

*A note on my suit. If you are looking for an outfit that would stand out even at the NBA Draft, go to this website  My hosting suit was truly a one man war against ISIS.




Public Speaking with Parkinson's disease

The idea of speaking in public is enough to frighten most people but when you live with PD, it is especially challenging.  I think public embarrassment is one of the biggest fears for most people and speaking to a large group can amplify symptoms pretty quickly. I do a TON of public speaking as a dean so here are my tips:

• Find a set-up that works for you: My ideal stage is one that has a podium but also allows enough room for me walk about. I hate handheld microphones and always ask for a lavaliere instead. Keeping my hands free is important to me.

• Prepare! Some patients have cognitive challenges and seeing a sea of faces can rattle them from giving an extemporaneous chat. I do think if you have these challenges, you need to prepare in a more thorough manner. When you're 100% confident and ready, it is harder for anything to shake you.

• Understand you may be symptomatic: fighting your symptoms never works---particularly when you're on stage. If I am displaying tremor, I will often tell the audience that I have PD. Couching it in a joke often works: "I want you to realize that I'm shaking due to the disease, not because I'm nervous. I've seen who is in the crowd---I'm not impressed."

• Shake it off: not every public address will go well and you sometimes just have to move on. I recently taught a class to a bunch of 12 year old girls. They are truly monsters and should not be allowed out in civil society until they can hold a conversation without rolling their eyes. Needless to say, the entire engagement was awful but I learned a valuable lesson: teenagers are the worst!

Public speaking, whether you have Parkinson's disease or not, can be challenging. The key is to not shy from the challenge and instead embrace the opportunity. I truly believe that we all have it in us to be excellent, engaging speakers---it just requires preparation, patience, and practice.

Getting Injured with Parkinson's

I separated my shoulder---badly. What is a separated shoulder? Good question. Here is the Mayo Clinic's definition:

A separated shoulder is an injury to the ligaments that hold your collarbone to your shoulder blade. In a mild separated shoulder, the ligaments may just be stretched. In severe injuries, ligaments may be completely ruptured

The obvious question comes to mind: Dean Roberts, how did you manage to do this? Well, I will give you three scenarios and you guess the correct one.

1. I trusted Billy Joel to be my designated driver.
2. I participated in a Unity March with Donald Trump and something went horribly wrong.
3. I slipped playing freeze tag with my daughter and her munchkin friends.

Did you guess #3? Great job! It almost makes up for your many personal and professional failures in life! (I'm kidding)

Moriah Carey and I have the same sling!

I tend to view Parkinson's disease as an overlay on an otherwise very healthy guy. It impacts me on occasion but, for the most part, I can do the things I enjoy fairly easily. It is when you throw another variable in this mix---usually a head cold---that I really "feel" having PD. Well, nothing to date had prepared me for the pain I was to feel having a shoulder injury on top of Parkinson's disease. The closest experience I have had to this much deep pain is when I read an entire blog post by the Perky Parky from the perspective of her dog. (I'm not kidding)

The best thing to do for my type of injury is to sling the arm and rest the shoulder which makes good sense. The problem is that I suffered a right arm injury and my main symptom---an arm tremor---is fairly localized in my right arm. Good God, talk about pain at night when the should joint grew stiff and then the tremor kicked in. What it also did was make it incredibly hard to sleep and we know that lack of sleep often leads to increased symptoms which messes up my shoulder further...it is a pain train.

Fast forward a few weeks to a scene at AP's feel-goodery Montessori School:

Teacher MoonBeam: Bryan, you seem to be moving gingerly.

(Before I can respond, AP saunters by)

AP: Dad hurt his f@!king shoulder playing tag. That f@!king shoulder may never heal.

(Ithaca parents engage in silent judging. End scene)

Now my daughter is a clear juvenile delinquent but, I will confess, this one is on me. My colorful use of my favorite word made AP think that "bleeping shoulder" was a medical diagnosis similar to "tennis elbow" or "plantar fasciitis." This cracked me up and, despite the constant pain, helped me regain my perspective on things.*

Living with Parkinson's is going to be different, and as in this case, more painful (at times) than a traditional existence but I need to keep things in focus. The best thing I can do is use the experience to learn and grow from it. The pain may be severe but my daughter is still hilarious, Ithaca is beautiful right now, and the Mets are in 1st place---what I'm getting at is life is good and that needs to be the paradigm in which I live.

*BR's Note: The semantics are no doubt lost on the Montessori peaceniks who would love nothing more than to see me flogged by Bernie Sanders while Dave Iverson narrates the event for NPR. Sadly, I can pay their full tuition so my David Mamet-like dialogue will continue to be tolerated.

Updates, Decisions, and Bryan Turns 35

Hello, Internet! I know, it has been a while. Did you think that the Parkinson's had won? That I was in a wheelchair mumbling incoherently to my sassy, overweight nurse? Not likely, bro --- here are some updates and an interesting decision that I had to make.

UPDATES

• I turned 35 on May 15th. There's really nothing special about entering your mid-thirties except that I seem to understand less and less cultural references by my students. Also, do you know what Tinder is? For your sake, I hope you never have to have it explained to you by a sorority girl. Some things can't be unheard. 

• Exciting news on the home front: my daughter signed a contract with Death Row Records. They grow up so fast!

• Here's the rest of my spring semester in a photo essay (photos are not in chronological order): 

Here is the result of the ARISE fundraiser. An almost completed playground that is inclusive for all children!

 Avery reacts to the SCOTUS decision!

Very cute...unless she grows up to be a stripper

My article for IC View---I enjoy the press when I can write the story answering my own questions


I spent a week at the Army War College---absolutely transformative.

Bryan Roberts: The King of Sound Bites

Oh, Apple Watch, you complete me!

Spent way too much time making an Avery Muppet at a super depressing (and bankrupt/closing) FAO Schwartz

LIFE DECISIONS

I think a common perception of someone living with Parkinson's is that they are individuals who have given up on their professional aspirations and, instead, have bake sales and dabble in advocacy in anticipation of something bad eventually happening.

My hope would be that--through this blog--it becomes clear that life with PD is far more nuanced and interesting. While I have had to slightly modify my life due to PD, my career aspirations are the same: I want to be a college president.

I've kept my eye on the prize but as my contract expired at Ithaca College, I received an unexpected job offer: from a media-focused hedge fund. As an academic dean, I pull a decent salary but no where near private equity money. So here is the way I looked at my two job paths:

• Hedge Fund
• Work 80-hour weeks but, based on compensation model, would secure the financial future of my family.
• The client base and nature of work seems intellectually stimulating.
• How would my health be impacted? I would be financially set but would it put me in a wheelchair or worse?

• Associate Dean
• Continue my 70-hour weeks and continue my career ascent.
• My work is varied and challenging. I hate cold weather but love what we are doing at the Park School of Communications.
• The disease has progressed slowly during my 4-years at IC. Why rock the boat, health-wise?

Let's end the drama--I signed a one-year deal back at IC. The decision maker had nothing to do with Parkinson's and everything to due with mentorship. In higher education, we mentor the young. In finance, they eat the young.

The value and enjoyment that I receive in my current position is positively correlated to the amount I interact with students. I feel that I can make a positive impact on their lives (and showing how to live with a chronic illness is part of that) and, when both offers were on the table, that was the tipping point. 

Reflecting upon the experience, I am interested in how having Parkinson's disease was a variable during my thought process but, in many respects, it was a minor issue. That's the nuance and that's the patient challenge.

How can I properly monitor my health while achieving all that I desire out of life? 

I believe that you can strike a balance between both and, in the upcoming years, I hope to chronicle the mixing of personal aspirations with a careful consideration of my health. My goal remains the same--become a college president--and a stiff right hand or rigid right leg is not going to alter this plan.

Life of an Associate Dean

Hey There---the month of April is killer in higher ed: enrollment pressures, graduation issues, banquet upon banquet, etc. The long and the short of it is I may be out of touch for a month but please know that I will return----better than ever!

Here's a piece written by me that will be in the spring edition of IC View:

Working with Parkinson's

Advice from a Fox

I tend to take very few things in life seriously-including my own health. One of the only things that I'm truly dedicated to is being a good father. This also gives me a large amount of anxiety--will my daughter see me as being "sick" diminish her childhood in significant ways? Make her feel that she received a raw deal in the "parent lottery?" Will this feeling engender low self-esteem and lead to poor life decisions---like dating a NBA player with a neck tattoo, becoming one of those idiots who enjoys the World Cup, or, sweet Jesus, enrolling at Syracuse University?

This has been weighing heavily on my mind recently as Avery turns four tomorrow. I have had Parkinson's for her entire life. She'll never know Bryan Roberts: the guy who was a stud athlete; Bryan Roberts: the guy who never got sick; Bryan Roberts: the guy who almost chose military service over college; Bryan Roberts: the guy who dated the underwear model with shaky moral values (she is probably better off not knowing about this), etc.

Last Wednesday night I found myself at a Michael J. Fox Foundation fundraiser standing next to Michael's son, Sam (not to be confused with the other Sam Fox who runs long distances and climbs mountains for sport). We got to talking and after a while of discussion, started talking about raising kids while having Parkinson's disease. I disclosed my fear of seriously messing her up and then Sam put my mind at ease. He said:

"Growing up it wasn't dad who has Parkinson's disease. Dad is just dad."

That simple phrase really put things in perspective. My daughter won't know what I was or what I am not, she will just know that I'm her father and I love her very much.   Parkinson's disease may be a disease of diminishment but it doesn't have to be. Some roles, like a parent, are too big to be diminished.

So, happy birthday, Young Roberts--your dad loves you and is incredibly proud of you.

Work It, B.Ro!

The interesting thing about having Parkinson's is every day is a sort of mini science experiment. "If I skip breakfast, how are my afternoon symptoms?" "If I drink coffee, how do I feel?" "Did I really have to eat the entire box of yellow Peeps?" Actually, that third question has nothing to do with PD but is based in reality.

In a very perverse way, the social scientist in me enjoys pushing the boundaries of this chronic disease to see what happens. I had an opportunity to test my health again when I agreed to chair the search for the associate dean in the School of Music. In my mind, this would be a fun assignment --- akin to being a judge on America Idol.  I've chaired enough executive level searches to know, in actuality, they can be grueling affairs.  They involve meeting the candidate early in the morning and shepherding him or her through the entire day including an evening dinner.

 Not exactly the search committee for the associate dean of Music

The interesting thing is your own workload does not cease. So in fact, you need to find ways to do your job and run a successful search. This meant two consecutive 80 hour work weeks. I typically work between 50 and 65 hours a week but when you start to trend to 80, I am entering unknown territory.

The good news: I was able to do both weeks with very little symptoms. Perhaps I was able to get myself mentally ready but I really handled it with a fair amount of ease.

The bad news: After it was all said and done-I am on my final drive home at 11 PM and a cop pulls me over on suspicion of drunk driving. It wasn't DWI but DWP: driving with Parkinson's. The officer was incredibly accommodating when I told him about my situation. It was a good lesson for me to learn too: no matter how invincible I still perceive myself to be, I need to think twice about driving after a very long week.

Here is the conclusion of my social science experiment: the subject, a 34-year-old handsome devil who has been diagnosed with Parkinson's disease for almost 5 years, can still work back-to-back 80 hour work weeks.  Avenues for future research: the same subject tries nothing but drinking and watching sports for 80 hours a week.  That seems to be more the subject's preferred lifestyle.

This is Not One of Those Stories

Dana Lesemann is a lawyer with the federal government in Washington, D.C. She has worked in national security law, cosumer protection law, cybersecurity and banking. She is the mother of an 11 year old son of whom she has sole custody.  Lesemann was diagnosed in 2011 at the age of 45.  She is about to try her first case since being diagnosed with Parkinson's, an experience she hopes to write about --- after a vacation.  

Lesemann can be contacted at danalesemann@mac.com

At every Parkinson’s conference, support group or other get together there are couples who talk about how the diagnosis and aftermath strengthened their relationship. I like those stories. They make me feel … good. This is not one of those stories.

I was diagnosed four years ago. It would not be fair or true to say that the diagnosis wrecked my marriage.  No, the diagnosis was more like the water that found all the cracks in the foundation of our marriage.  It seeped in everywhere, took over everything. My husband did not want me to tell anyone about my Parkinson’s – not our then 9 year old son, my family, our friends, or my co-workers. “They’ll never look at you the same way again,” he said.

I tried at first. But denying my Parkinson’s allowed it to take over my life.  I spent more time and energy hiding it than living.

I’m can’t say that having Parkinson’s has been a good thing. But my diagnosis led to a paradigm shift:  I realized my marriage was not working and it was not going to get any better. His reaction to the PD was his reaction to life: Duck and cover.  I’m the opposite: Grab and go.  This was the final crossroad.  I had to get out.  If I was going to live with Parkinson’s, I was not going to let it rule me. Life is too short to be miserable and living in an unhappy marriage was not the way to do it. 

Telling my son I had Parkinson’s was not hard; to him Mom is Mom. Although he’s made it clear he would rather I play paintball with him, I’ve also told him that it’s not necessarily the PD that’s kept me from shooting exploding pellets full of paint with him. PD is the only thing he’s never really asked questions about – Islamic fundamentalism, the electoral college, the demotion of Pluto as a planet: questions all. PD: not a one.  They’ll come when they need to. 

Walking out of my house with my son to a rented apartment was probably the hardest thing I have done. I left the certainty of being miserable with someone for the uncertainty of being alone. People I knew with PD – especially women – thought I was crazy. The fear of being old, sick and alone is a powerful one, and it keeps many people in unhappy relationships.

I am a lawyer; I assumed that I would be able to settle the divorce and custody amicably.  I still have trouble believing how wrong I was.  My husband first sued me for full custody of our son, claiming I was incapable of raising him because of the PD – even though I was working full time as a lawyer for the federal government.  He simultaneously claimed that I was a workaholic who did not have enough time to devote to raising our son if I had custody of him. Even for a lawyer that’s a tough tightrope to walk.

We settled custody on the eve of trial, after all my medical records were subpoenaed, and I was questioned about them and everything else under the sun. I got legal custody and the authority to make decisions about our son’s education and health. His father was supposed to see him every other weekend.  Sometimes months would go by without my son seeing his father. I would joke that single parenting is not for the faint of heart or the low of dopamine. 

I am lucky to have a tremendous support system: friends, family, and co-workers who helped me through my decision to move out, kept me going through the divorce, helped my son in ways that I could not, pitched in with last minute child care on holidays, said the right thing at the right time, or said nothing and just listened.

And dopamine or no, I am a single parent, and we are on an unknown path. And it is so much better than being trapped by fear. 

Lovesick

Jennilyn Merten is an award-winning documentary filmmaker whose films have been broadcast on OWN, The BBC, HBO, PBS, Sundance Selects, NPR and in numerous foreign markets. She is also the Off-Broadway producer of the Drama Desk nominated "The Eyes of Babylon, and the co-director of "Beehive Spirits", a documentary short which was awarded a regional Emmy. 

Merten was diagnosed in 2008 at age 34. She recently relocated from NY to Sun Valley to partner with Crisman films and begin shooting a new documentary on the upcoming 2016 Munich Memorial.  

Merten can be reached at: www.perpetualprojects.com

This is my first blog about sex and Parkinson’s Disease. It’s been difficult to get past this brief introduction because I am still debating whether blogging about sex is going to result in more sex, better sex, or abruptly less sex. I faced the same quandary while writing my first OKCupid profile, and then a troubling mix of disgust, terror, and mischievousness. It all started rather demurely: “My bowling name is Thelma”, “my mom is hot”, I’m a documentary filmmaker interested in other people’s identity dramas”. But when Jeff Buckley started crooning “Hallelujah” and Mr. Gray discovered 50 shades of dopamine, let’s just be clear, I wasn’t the one tied to the kitchen chair. I was knotting the rope.

Let’s back up. Taking synthetic dopamine and its agonists changes everything. The higher and more erratic the doses, the foggier the beer goggles. Sounds like a perfect moment for a public service announcement on abstinence. But wait, please. One of Parkinson’s strangest negotiations is drug side effects, especially the paradoxical ones that don’t make it into PD conference dialogue. What I mean is this: I’d spent a lifetime of fairly routine but amazingly fierce religious shame—about my body, about sex, and intimacy. Just as it seemed I was making peace with my adult self, I was diagnosed. Now there was an entirely new bodily shame to take to god or my therapist (or the new nano brewery.)

The battle with dopamine and its gifts—mania, insomnia, increased appetite(s), an excellent collection of shoes and indefatiguable creativity— has gotten me in trouble, as it has others no doubt. But it has also helped erase an unhealthy portion of abstract guilt — not the direct kind you probably should feel, but the unnecessary (in my opinion) discomfort with one’s body, with loss, and with those awkward but very necessary attempts at real intimacy with others. It has helped me locate old muscles, old desires, an old but achingly familiar self.

Be assured, I’m not giving dopamine all the credit for my sex life. It takes a ridiculous amount of willpower to be vulnerable, to admit on a first date you have Parkinson’s, to long for connection or just pleasure with your threatened mobility and immortality exposed in plain site. We are, after all, expected to politely ignore both the specter of death and our parents having sex in the next room. 

I have two solutions and one theory.

1. It helps to be incorrigible. That means never apologizing for being “sick” or as a friend once suggested, “you don’t have to wear your campaign button to dinner”. To me this also means laughing when you don’t want to because sometimes the only relief is to appreciate the absurd with absolute confidence (for example: when you must do push ups in the bathroom stall to calm dyskinesia between first date cocktails). Being incorrigible also means exposing yourself when you least want to…because you can’t get that close with clothes on.

2. It helps to be blunt, or at least candid. Some hours, some days I can “pass”. When I can’t, or when I don’t want to hide all the strange and curious concerns of my life from someone new, I start a story. An honest one.  It’s a tale not of loss but wonder, of all the unexpected self-improvements and internal alterations that have no easy accounting. And though I don’t love the disease I would not erase these figures from the ledger. Sometimes it’s much simpler. I type a shaky note on my iPhone and hand it to the bartender: “I have Parkinson’s and I need a shot of whiskey…”.  

A.“Lovesick” is my operating theory: We have a disease resulting in the loss of Dopamine. The body produces elevated levels of Dopamine when we fall in love. Clearly the cure for PD is to do just that. I’ll take a human object of affection but I’m also committed to falling for architecture and Sunday brunch in NY. I’m committed to the slap of sheer beauty the world emits if you keep your eyes open while you’re afraid, to the Footloose soundtrack and to the sense of invincibility and pure gratitude I experience when all the stars align, and the dopamine perfectly mimics the song of my cells….  I stretch my legs, and begin to run. The ground disappears, but my body is solid. I am a god, I am a runaway horse, I am Rocky Balboa on the steps, defiant with elation, ready to feel flesh meet flesh. Who said Parkinson’s Disease is a death sentence…Il n'est qu'une petite mort.

Stepping Forward: Some Great Changes Ahead

Can We Stop Saying Caregiver?

On April 22nd, I will be giving the keynote speech at the ARISE Celebrating Inclusion & Achieving Independence Dinner at the Oncenter in Syracuse, NY. Here is a description of the organization from Nancy Kern Eaton, the Director of Development & PR:

ARISE is the designated Independent Living Center for five counties in Central New York: Onondaga, Oswego, Madison, Cayuga, and Seneca.  We work with people of any age with any type of disability.  A majority of our board members are people who experience life with a disability and our mission is to create a fair and just community in which every person, regardless of disability, can fully participate.  We have more than 50 programs and services and offer inclusive recreation at ARISE at the Farm, a 77-acre recreation facility in Chittenango, and ARISE & Ski at Toggenburg Winter Sports Center. 

I am absolutely honored to have been asked to speak but was curious about one small detail, "Why are they asking me? I do not have a disability." Those of you who are familiar with this blog know that my stupidity knows no bounds. After a few moments of reflection, things sunk in: It is conceivable that I may be disabled in the future.

No one knows what the future holds with Parkinson's disease as everyone gets their own version of it (an individual sport in a team game) but becoming disabled is a possibility that one cannot ignore. Denial is a powerful tool and I simply refuse to see this as a potential outcome but, if I'm honest with myself, it is. Now I can negotiate the idea of living with a disability but I absolutely hate the idea of having a "caregiver." I even hate the term itself---the conceit being that you are far too unwell to manage your own care. 

When I imagine my future, I typically fantasize about living on the moon and my "caregivers" being a helper monkey named Leroy and three hot blonde nurses from Sweden. While this is likely, what is even more probable is that as the disease progresses, I will need some sort of assistance. What I hope to never need is a "caregiver."

Language is a powerful tool and the way we frame illness matters. People who tend to talk in terms of losing to a disease typically do so in much quicker fashion than those individuals who are willing to fight. By using the label caregiver, we make it seem like a forgone conclusion that someone with PD will eventually be unable to take care of him or herself. I tend to view Parkinson's as a disease of gradual diminishment but the atrophy can be slowed by attitude and action. I need a term that fits my paradigm and it certainly isn't "caregiver."

So smashcut to 2040, I'm 60 years old and have been living with PD for 30 years. What do we call the person that takes care of me?  I would prefer the term daughter, friend, 5th wife, etc. because my hope is that "caregiver" is not necessary. That the care they give me is the same care that I give in return. 

Notes from 2014: The Year of the Toddler

As soon as the year rolls over, I typically take the first few days of the new one to sit and reflect upon the last 365 days. What worked, what didn't, and how can I keep moving forward? As I have written before, I have somewhat of a photographic memory which is both a gift and a curse. I will remember even the smallest amount of kindness and generosity that a person may show. Conversely, I am the king of petty sleights and can never just let something go. An example:

When I was at SUNY, I was given the responsibility of improving our retention and graduation rates. One of the many ways to do that is to build cohort affiliation---get students to start thinking in terms of outcomes. So instead of saying, "I'm a sophomore"---which is open ended---they may instead say, "I am class of 2018." To push this notion further, I held "class days" where all sophomores would get a free t-shirt that said "Class of 2013." In the Land of State Funding, nothing lasts forever and after the 2008 dip, I was forced to increase efficiencies and that meant replacing the beloved shirts with a pretty crappy water bottle.

So I give out the water bottles during one class day and it triggers the following email exchange:

Email #1 from student: (dripping with sarcasm) Thank you so much Professor Roberts for the beautiful water bottle. I plan to keep it in a safe and break it out during special occasions.

Email #2 from Roberts: Thanks for taking time out of what must be a grueling and busy work week for you to email me that (constructive?) criticism.  No one said you had to take a bottle. Sorry to distract you from running a Fortune 500 company.

Email #3 from student: I can't believe you would respond--what type of professional are you???

(So of course I respond and we keep going at it until the final email below sent by the student)

Email #17 from student: Professor Roberts, please stop emailing me. I have to study. Please stop emailing me.

Roberts Wins!!!!!!!!!!!
_____________________________________________

Perhaps this stubborn streak is what helps me manage Parkinson's---I am simply not going to lose. Unfortunately, this trait has carried on to my daughter. She remembers everything and will argue her point to exhaustion (and she is 3).  The teenage years will be a blast.

Looking back on 2014, here are some brief thoughts and observations:

AP sporting a Kevin Ollie jersey---both had a good 2014.

• We are really cooking with gas concerning PD research. The Fox Trial Finder, financial investments, patient participation, etc. are great predictor variables for a breakthrough. 

• The suicide of Robin Williams stung on many levels. I won't get into it again but one last thought---he could have been a powerful advocate for PD research.

• Why do I volunteer my time with the MJFF? Is it the brilliant and dedicated staff (all educated in Virginia)? NO. Is it the private-public partnerships that are funding innovative and promising therapies? NO. Is it the emphasis on translatable research? NO. To be honest, the reason I donate is that I have lost a ton of money to MJFF CEO, Debbie Brooks, while playing in underground high stakes poker games. If I don't help speed a cure, she will personally break my hands.

• Raising a toddler while managing PD is a challenge but, ultimately, one that probably helps slow the disease. She could care less about state of my symptoms or fatigue; she wants to move and I plan on being right next to her for a long time.

• The Partners in Parkinson's (PIP) events were very impressive on a number of levels. Logistically, it is amazing how many of these events the good people at MJFF mounted flawlessly.  The participants were an amazing bunch---no one more inspiring than Dave Iverson. What really struck me was interacting with the PD community at-large. There is such a wealth of talented, determined people out there that I simply cannot see Parkinson's winning.

• Finally, let's talk about my blogging. I am awful at this---I will go months without typing a sentence yet the site is becoming quite popular. So how do I remedy this: video! You can expect more video content which will allow me more time to think of what to discuss (or shop for hair gel online). 

Innovation Roundtable: A Collaborative Effort between Ithaca College and the Michael J. Fox Foundation For Parkinson's Research

*Note from Roberts: I was cleaning up my files and realized that I never posted this one from the summer. The event was filled interesting people and big thinkers.

Deborah Brooks, co-founder of MJFF, and Diane Gayeski, Dean of the Park School, led the roundtable.

The Roy H. Park School of Communications held its latest "innovation roundtable" at the headquarters of the Michael J. Fox Foundation on Thursday, August 7th. The topic of the event, "Engaging the New Philanthropist" attracted 30 executives across the field of communications for a thoughtful and wide-ranging discussion.

After a brief welcome by Dean Diane Gayeski '74, industry leaders Deborah Brooks, co-Founder and Executive Vice-Chairman of the Fox Foundation and Henry Berman '74, CEO of Exponent Philanthropy articulated the opportunities and challenges that exist in the dynamic not-for-profit sector.

The opportunity for the leadership team of the Michael J. Fox Foundation to directly interact with those individuals shaping the face of media was really a special moment and served as a model for more collaboration between higher education, non-profits, and industry professionals. "In many respects, the two organizations are quite similar," said Bob Regan, Director of the Park School Executive Masters in Communications Innovation. "Both the MJFF and the Park School are smaller than their peers but have become disruptive forces due to progressive thinking that is mission centered and data driven."

The collaboration fostered at the roundtable is just the beginning in an ongoing dialogue. "I hope that the Fox Foundation can look at the participants as an objective sounding board that are available to the Foundation at any time to offer counsel and strategy in this dynamic media landscape." said Diane Gayeski, Dean of the Park School.

Gaining Internet Recognition While Keeping My Clothes On