Care Partner

On our first date, John and I laughed a lot. He’s a goofball–as many of you know–and took every opportunity to tell a stupid joke or make a funny face. Occasionally, his voice would trail off to a whisper, but I thought he did it deliberately so I would move closer to him.  At the end of the date, he said clearly: “I have Parkinson’s Disease.”  I assumed he was simply offering a complete disclosure, and I was impressed. Who has the guts to admit faults or problems–on a first date?  But deep down, I wondered: Should I stick around? Or should I run now?

It’s been four and a half years since then. We’re still laughing and having a good time. And John is goofier than ever. Of course, Parkinson’s has remained a constant throughout our relationship, but it has progressed. John’s balance and gait have gotten worse over time, and he has freezing episodes (festination) when he cannot move at all and seems “stuck” to the floor.  And his voice–that lovely, soft, joke-telling voice–is now barely audible. In fact, there are times when I see that he is mouthing words, but there is no sound. Only silence.

So let me admit one of my many shortcomings : As his roommate (and occasional care partner), I’ve had a really rough time adjusting to John’s speech challenges. Parkinson’s doesn’t play fair, dammit!

• I ask John a simple question and get a blank stare in return. I wonder: Is it a voice/breath problem, or are his brain signals messing with word delivery or articulation? Is he faking? Yup, he’s been known to fake it.
• I listen in on a Loud Crowd zoom class and hear someone say loudly, “Speak with INTENT.”  Next thing I hear: John shouting–clear as a bell–I’M SPEAKING WITH INTENT!”  But when I suggest it to John later in the day?  Zippety-doo-dah!
• With JFK’s amazing ParkinSings group, John often belts out a tune with his beautiful (if slightly hoarse) voice. Wow! This is progress, I think. This gives me hope for conversation, a little chit chat! If you can sing clearly, can’t you be “taught” to speak clearly? Then I find out that singing comes from a different part of the brain. And it can’t be manipulated or magically transformed into regular, everyday, spoken-word conversation. How weird–and frustrating–is that?

It’s funny, I take his balance and gait problems in stride (pardon the bad pun). I’m happy to help him get up from a chair by offering a hand or arm–or pulling him up by the back of his pants, actually quite fun to do, and we both have a good laugh–at his expense! Or, when he gets stuck in a freeze and his brain doesn’t transmit the proper instruction, I simply count one-two-three, and off he goes.

Obviously, it’s the communication I miss the most. The back and forth chatter, the Q & A, the banter. Some days, the quiet in the house drives me crazy! But what I’ve learned, and continue to learn–the hard way–is one of the greatest lessons in life: ASK FOR HELP!

When I feel lonely or disconnected, I call a friend. Maybe 3 friends in a row! The help I need is always there. I’ve joined a Zoom chat room, where I can talk about anything with my buddies, and I can offer my help to them (and stop being so self-centered about all my so-called problems).  I speak regularly to a therapist about my feelings, my frustrations, my successes and my failures in and outside of the relationship. I also write a Gratitude List at the end of every day. Five things that I’m grateful for, be it my kind, helpful friends, the roof over my head, healthy food to eat, the cozy bed I share with John–did I mention he snores with INTENT?–or the fact that we both still have most of our marbles.

I’m not religious but I pray for strength–asking for help on a higher plane, I like to think. And then I meditate–a relaxing way to listen for the answers. It calms and focuses me, and helps me stay in the day. “Don’t step into the projection booth,” a good friend reminds me, especially when I get fearful about the future and my ability to cope and be of help to John. “When you get caught up in worrying about tomorrow and what might happen,” this friend advises, “look at where your feet are. You’re here. Now. All is well in this moment.” When I do that, all I need is John’s sweet smile, and a reminder of what an intelligent, articulate, creative, giving and loving person he can be, and suddenly I know that I’m exactly where I’m supposed to be.

How Rock Steady Boxing has Transformed
My Attitude, My Parkinson’s and My Future

I am living—and thriving—in spite of a dreaded diagnosis: Parkinson’s disease. Ten years ago, at age 62, I began noticing symptoms that scared me: slight shaking in my left hand when at dinner and slowly losing my ability to write legibly. As a civil engineer and wannabe architect, I always prided myself on my script and printed handwriting. And then I began to lose control of both.

My handwriting became smaller and smaller until it was illegible — even to me. My family and I shrugged off the symptoms due to lack of sleep or stress from my job, but every morning I’d try writing again.

Seemingly overnight, I was losing motor control. Fortunately, I was serving on the Neuroscience Committee at JFK Medical Center and before long, I was sitting before a JFK movement disorder specialist. After a thorough exam and a DaTscan of the dopamine concentrations in my brain, the doctor delivered the knock-out blow: I had Parkinson’s disease!

My reaction was shock, disbelief and then denial. After all, I led a very healthy and active life, was successful in my career and have no family history of Parkinson’s. Why me? While other typical non-motor symptoms crept into my life, I hid it and told only my wife. Not even my grown daughter and son knew about this neuro-degenerative disease that would only get worse with time. I don’t know if I was more embarrassed by the symptoms or afraid of how Parkinson’s would affect my future. My wife kept me sane and was a wonderful caregiver. Six months later, I finally told my children and closest of friends.

Then I started to fall prey to my emotions. I began to grow angry, blaming myself for “allowing” this disease take over my body. Luckily, my medications seemed to help. I also learned that the progression of Parkinson’s, in my case, was fairly slow. So, I began to read everything about Parkinson’s I could get my hands on, and, in the process, learned that intense exercise could actually slow down the natural history of the disease.

I began to ramp up my workout routine — more kayaking, swimming, weight training, spinning, yoga and Pilates. That seemed to keep my symptoms in check, at least for a few years. But the truth was, I was working 60 very stressful hour weeks as a construction manager in New York City. I began to get the sinking feeling that my stress was becoming a major counteracting factor.

After three years of this self-imposed fitness regimen, new symptoms began to surface. Although I had always loved mentoring high school and college students and excelled at speaking publicly, my speech was becoming soft and wispy. Worse yet, I started having difficulty with memory and articulating my words. That spelled the end of my mentoring and public speaking, which in my case, would severely affect my role as the president of a large construction company, forcing my retirement.

Shortly after my diagnosis, my son Tim became chairman of the South Florida Chapter of the Parkinson’s Foundation. He had learned about Rock Steady Boxing (RSB) and convinced me to try it, so I joined Coach Dayel’s Central Jersey classes in Garwood, NJ.  I learned that through RSB, I could change my attitude and perspective, significantly alter the progression of my Parkinson’s and dramatically improve my quality life.

I began to see that perhaps I could exert power over my diagnosis. I just had to give Rock Steady Boxing a chance.  I increased my classes to three and sometimes four times per week. I quickly became a devotee and advocate of the RSB “tough love” approach that encourages boxers to do more, and then keep doing more. Before I knew it, I was hooked on and inspired by the camaraderie provided by the group classes in Garwood.

Eventually, my speed, strength, balance and flexibility dramatically improved. At the same time, I continued to engage in physical therapy and began twice-weekly Pilates classes, all of which have added to the overall improvement of my condition.

Rock Steady Boxing empowers people with Parkinson’s to focus on overall fitness, strength training, reaction time and balance. The result is almost always “improvement” in a disease that is known in the medical profession as inevitably degenerative.

In fact, John Lehr, the, then new CEO of the Parkinson’s Foundation, stated that “the Foundation will continue to provide community grants through funds raised by Moving Day® walks across the country for Parkinson’s boxing programs for this very reason. There is a demonstrated improvement in symptoms and in mood resulting from exercise programs such as Rock Steady Boxing”.

Around 2016, the JFK Neuroscience and Rehabilitation Departments set its sights on strengthening its established Parkinson’s Center at JFK Medical Center in Edison, NJ. One new aspect of the Center was to establish an on-campus RSB affiliate, which opened in July 2017 to serve the large South Central Jersey PD population.

As my first step in furthering this process, in April 2017, I earned my Rock Steady Boxing Training Certification — together with a JFK physical therapist and Lauren Karpinski, a JFK exercise physiologist who joined me at the RSB Training Center in Indianapolis. RSB program director and head coach, Kristy Rose Follmar, and Assistant Coach, Christine Timberlake, were amazing and inspirational as they ran the trainees and boxers through the 90-minute sessions.

Since Rock Steady Boxing opened in 2017, it has attracted many boxers hoping to fight PD.   Classes sometimes included as many as 20 people who have since formed a strong bond with RSB and each other.  In 2020, I moved permanently to Lavallette, New Jersey where I train twice a week at Brielle Sports Club, go to PT twice a week, and joined a local RSB facility in Point Pleasant.  However, I still maintain close ties with my friends at RSB JFK Johnson Rehab Institute and RSB Central Jersey in Garwood.

Turning a negative situation into a positive experience is a critical part of learning how to deal with what life throws our way. For me, Rock Steady Boxing has transformed my life from that of a scared patient with nothing to look forward to in life, to an RSB coach and boxer, where I have the opportunity to teach my current mantra, “exercise is my medicine,” with other people in my Parkinson’s community.

I AM ROCK STEADY!

Person with Parkinson’s (PwP,)

My experience with Parkinson’s Disease About 9 years ago, in 2012, at the young age of 66, while visiting a Doctor of Neuro Ophthalmology, the doctor asked me, “Daniel, how long have you had that tremor in your right hand?”.  I said, what tremor?  I looked at my hand, and indeed it was bouncing around a little bit. I said, oh that’s nothing, everybody gets that occasionally.  The doctor asked me to walk a few feet down a corridor, turn around, and walk back.  With a sad look on his face, he said, “it’s not my specialty, but I think you have Parkinson’s Disease.  I had no idea what that was, but from the look on his face, it could not be anything good.   But, not to worry, clearly, whatever it was, this doctor was wrong.  After all, he did say that it was not his specialty.

To make a long story short, I was directed to see a Doctor of Neurology with specialty in Movement Disorders.  The diagnosis of Parkinson’s Disease was confirmed.  I tried every which way to talk my way out of it, but the diagnosis held.  I had PD!  OK, so what now?  Millions of people have “It”.  Clearly there must be a pill or a surgical procedure that can get rid of this thing.  Well, it’s not that simple.  It is generally accepted that every one with PD reacts differently to the available treatment options.  From my 9 year experience of living with PD, my words of wisdom are that the worst thing to do is to do nothing.  The best thing to do is to do something.  I have tried both methods and, hands down, the more you “do”, the better you will feel.  Not to show off, but why not, the following is a list of activities I have been involved with:

• Graduated twice from LSVT BIG Physical Therapy Program
• Completed an Occupational Therapy Program
• Participated in Rock Steady Boxing
• Participate in Loud Crowd Voice Therapy Program
• Participate in ParkinSINGS Chorus
• Participate as a Mentor to recently diagnosed Patients with Parkinson’s
• Participate in Parkinson’s Support Group 

PLEASE DO SOMETHING! Wishing you all the best

Care Partner

My wonderful husband of 46 years, Hugh, was diagnosed with Parkinson’s disease 8 years ago. Even though I suspected the diagnosis before the neurologist confirmed it, it was like a punch in the stomach for Hugh and I.

We tried to maintain a lifestyle of healthy eating, exercising, never smoking, and having a glass of wine rarely on a special occasion. Even though we were not responsible for PD, somehow you ask the question “how can this be”?
Hugh was such an active man and, at one time, he simultaneously worked in the corporate world, was going to school at night to earn his Bachelor’s degree, he taught religious education at our church one night a week, he was an Army reservist one weekend a month all the while being a devoted husband to me and a hands-on dad to our three daughters.

Hugh was retired for several years before his PD diagnosis. His new love was gardening. He took such pride in our property that the other men on our block affectionately called our lawn “the other woman”.

I share all of this with you only because it was devastating to him to have to give up so many things that were near and dear to his heart. I know all of you with PD can identify with Hugh. I used to think that grief was only when you buried someone you loved. I learned that chronic illness causes profound grief for the patient as well as the caregiver. It was difficult on Hugh, but just as difficult on me, to watch someone I loved so much have to make so many sacrifices because of ill health.

That being said, we are doing the best we can, as patient and caregiver, to hold on to the really good days to get through the really tough days. We are not perfect and some days our patience is a little thin. However, we are grateful for each other and hope and pray that PD progression is slow and we try to count our blessings.

Some of the things I try to be consistent with are making sure Hugh takes his meds on a regular schedule, I try to make sure I serve healthy meals as often as possible, and I urge Hugh to practice his virtual voice sessions on the computer. There are some great tutorials sponsored by the Parkinson’s Voice Project. For the most part, Hugh is highly motivated to stay in the fight. However, let’s face it, there are days when PD makes it difficult to put one foot in front of the other and to stay positive. I say this for the patient and the caregiver.

Hugh hasn’t driven for about 7 years now because of slow reflexes and rigidity in his legs. This makes me sad because giving up driving is a huge part of maintaining our independence. I am the main chauffeur for our family and I am a lucky girl because Hugh isn’t a back seat driver. (ha, ha)

I, by no means, am an expert on caregiving. However, I try to do my best even on my sad days when I want to stay in bed and forget about PD. In reality, some days are better than others. I pray for good health and longevity for myself so I can continue to be there for Hugh. Fran M., Care Partner”