Working with Parkinson’s

Bill Jenczyk

By way of introduction, I am a 49-year-old man who was diagnosed with Parkinson’s disease (“PD”) two years ago.  Those of us who are diagnosed at a relatively young age are faced with a significant question; how do we handle our condition in a work environment?  Should I let people know about it?  Should I try to hide it?  Even if people in my workplace know I have Parkinson’s, should I hide it from those outside my workplace?  In some cases disclosure may lead to a difficult work environment, in other cases lack of disclosure may cause additional stress as the person with Parkinson’s (“PWP”) struggles to hide their condition.

I will not be writing from a legal perspective; I am not a lawyer, and I will not pretend to know the legal issues surrounding PD in the workplace.  Instead, I will write about my decisions and experience in the hope that others will benefit from seeing the results.  I have chosen to be open about my condition in my workplace, and I will soon be stepping out into a broader group with an acknowledgment of my condition.  This is my choice, and for many it would be the wrong choice.  In the long run it may prove to be the wrong choice for me as well, but for now it has given me peace.  This chronicle is intended to highlight the actual results that I see as I am transparent about my condition.

My decision to be open came about in large part because I feel less stress knowing that people know what I am dealing with.  As those of us who are familiar with PD know, stress can bring on our symptoms in a major way.  In disclosing, I have reduced my stress and eased my symptoms.  The questions I hope to address include:

  • How do people respond to my PD in a professional environment?
  • What is appropriate disclosure?  Clearly there is a time and place for everything.  I don’t plan on walking up to people I am meeting and saying “Hi, my name is Bill, and I have Parkinson’s disease!”  That would clearly be inappropriate, unprofessional, and selfish.  When is it appropriate to say something, and how should you do so?
  • How do you handle your medication?  As those of us with PD know, your timetable is very important.  Taking a dose a half hour or an hour late can lead to discomfort, symptomatic response, and cascading difficulties.  What do you do if you are in a meeting? 
  • What other workplace issues arise?  What have others with PD experienced?

I am interested in finding out about what others have done, and how that has worked for them.  To the extent possible in a blog format, I’d like to document the issues that both I and others face in the workplace.  The goal of this blog will be to maximize the ability of PWP to successfully work, support themselves and their families, and to contribute to society.  I welcome any suggestions and comments that help to accomplish these goals.

As someone who is still in the workplace, I want to be sensitive to those I work with.  Because of this I will be more general than some may like, but it is important to recognize that this chronicle is about my journey in the workplace while dealing with PD.  I have no desire to hurt or embarrass anyone I come in contact with.  I can say that my workplace has been nothing less than fantastic since my diagnosis and disclosure; but as I write in the future I will obscure whether I am writing about my own experience or the experiences that others share with me.  It is one thing for me to be transparent with my own condition, it is another entirely to betray the trust of those I work with.  The only way I will be public with specific incidents in my own walk with PD will be if I have explicit permission to do so from those involved in the story. 

This post is the first in an ongoing series considering Parkinson’s in the workplace.

Why I Walk

Jacob Creem

Last year I was at the Annual Parkinson’s walk in Massachusetts. The walk is a fundraising event for Parkinson’s disease. For the event, we walk around a track at the Reebok Headquarters, raising money for each lap we walk. My Bobbie (Jewish for grandmother) has Parkinson’s disease and uses a walker.

I was proud of my Bobbie because she was fighting her disability. My Bobbie walked around the track with her walker, struggling at some parts but she managed to accomplish her goal.   

My Bobbie has taught me many life-long lessons.  Some of these lessons were to salvage the moments of my life, be thankful that I do not have a sickness that threatens my life, and most importantly to never judge someone from the outside, but from the inside.  All in all, my Bobbie has made me proud, and influenced me greatly. She is a great person with a good sense of humor, a loving heart and a heroic personality.

Organize a Walkathon Team!

Volodymyr Lyczmanenko
Chapter President 2009-2013

Presidents Team walk participant

Presidents Team walk participant

One of the most impressive sights at the annual APDA Massachusetts Chapter Walk-a-Thon, being held this year on May 4th at Reebok HQ, is the number and variety of teams who have registered for the Walk. Over the years, the number has skyrocketed, with over 1,000 people walking in over 75 teams.

Why are teams important? They provide a sense of cohesiveness and identity to walkers. Teams frequently organize around family groups, and it’s a joy to see teams with many generations, all walking together. Many teams give themselves fun names (e.g. Psalm 68: I Will not be Shaken, Muscles In Motion) or family names to honor a family member with PD (e.g. The Stanton Clan, Kay’s Girls, Papa’s Angels, etc.). Many teams have custom T-shirts made up, readily available at suppliers or through the APDA.

To organize a team, here are some simple steps:

• Set up the team on the Donor Drive website, available as a link from the main website at htttp://www.apdama.org or directly at this link

• Each participant can have his or her own “walk page” with a personalized message and a donation goal,

• Participants create a list of email addresses to which their donation request will go. With a link to Facebook, the donation request will go to friends, friends-of-friends and will, with any luck, go “viral”.

Last year we raised over $165,000, and our goal this year is $200,000 There’s only three months to go, so don’t delay in getting your team organized! I’ll be there, with my Past (but hopefully not Past-It) Presidents Team!

Yoga in a Pair of Pink Gloves

Renee Le Verrier

Despite my attempt at a yogic, peaceful approach to life, there are moments when I simply want to haul off and hit something. Hard. Maybe even several times.

Yoga helps. But so does boxing. Whether I’m waiting for a dose of meds to kick in, fumbling to zip up a jacket or passing on the scrambled eggs because the protein will interfere with the next dose of meds, the argh moments of life with Parkinson’s disease build up throughout the day. It’s incredible how the frustration dissipates when I take it out on a punching bag.

Studies show that exercise is beneficial to PD. “Forced” and challenging workouts such as boxing can be even more helpful. According to the Cleveland Clinic, activities such as boxing ease symptoms and are neuroprotective. Besides the tension release and fitness factor, there’s another bonus. Boxing is actually fun. Seriously, try on a pair of boxing gloves and see if you don’t want to take a swing at the bag. Add a coach, some funky music, and a go-for-it attitude and fun permeates the gym.

Rock Steady Boxing, the first gym in the country dedicated to the fight against PD, focuses on the fun while improving strength, speed, range of motion, rhythm, and gait through a boxing regimen specifically for people living with PD. Located in Indianapolis, Rock Steady Boxing offers regular classes as well as training camps for coaches, therapists and personal trainers who want to learn from them and then return home to offer boxing in their areas.

Al Latulippe and Greg Geheb attended the Rock Steady program. Al is a personal trainer from Methuen who works with Greg several times a week helping to ease his PD symptoms.

Greg says that boxing has been “life changing for my fight against PD. My neurologist has said he can just see how much better I look and move. My movements are much more fluid, smooth and my gait is better. I feel better, I have more energy, I have lost weight, I don’t nap as much if at all and it has done wonders for my mental health.”

Greg sums up his Rock Steady boxing method experience this way: “It gives me hope.”

“We are giving the tools and motivation for people with PD to fight back,” Al says. “This is the fight of their life.”

Recently, Al and Greg shared the boxing tools of hope they learned with me. We sweat, we sang, we hit stuff. We hit some more. Add some laugher, a few grunts, and a few unexpected successes (I do have rhythm!) and the time flew past.

The rest of the afternoon I felt strong and steady, and surprisingly at peace.

Al Latulippe is eager to work with others interested in learning more about boxing. “We are trying to spread the word to as many people as possible to give a fighting chance.”

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I had the pleasure to join Renee in meeting Al and Greg and look forward to their work in developing a program for the Parkinson Community. Feel free to contact the APDA Information and Referral Center at 617-638-8466 to learn more. Cathi Thomas

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