Finding Balance with Medications

This first appeared on 10/16/2018 at


What is my strategy?

My plan is to take Parkinson’s Disease (PD) medications as prescribed to get me to a point so I can function well and really push hard in my exercise.  Then, I hope that exercise, diet, meditation, yoga and massage will help me deal with my PD progression and symptoms.

Currently, I take Sinemet 25/100, 2 tablets, three times per day. With my doctor’s guidance, I am weaning off a daily 4mg. Neupro patch.  Sinemet has alleviated my internal tremors. However, I am still extremely fatigued all the time.

Do I really believe the medications are helping?

I have never had any ‘aha’ moments taking medications.  It was never like “wow, I feel so much better now”.  I don’t experience the “off time” that some have when the meds are wearing off shortly before the next dosage is due. So, I question myself how much the medications are really helping me.

Why do I want to reduce or halt my PD medications?

In the late 1990s, pharmaceutical companies reassured the medical community that patients would not become addicted to prescription opioid pain relievers.  Opioids target the brain’s reward system by flooding the circuit with dopamine.  Now there is an opioid overdose crisis in the US.

Since their introduction in the 1960s, drugs categorized as benzodiazepines (benzos), which include Valium, Ativan and Xanax, have been widely prescribed to treat anxiety and insomnia, alcohol withdrawal, and other conditions.  These medications must be prescribed with caution because they can be addictive.  Benzos  create surges of dopamine. Though opioids get more media attention, benzo abuse is equally rampant.

Levodopa, a component of Sinemet, may improve PD symptoms because it causes the body to make more dopamine.  Neupro patches work by delivering the dopamine agonist rotigotine through the skin directly into the bloodstream. Rotigotine stimulates dopamine receptors in the brain.  This in turn mimics the action of dopamine, which is found in lower-than-normal levels in the brain of Parkinson’s Disease patients.


From my overly simplistic, high level view, I see a common denominator (dopamine) in the three categories of drugs mentioned above.  Even though my brain may not be functioning properly due to PD, taking drugs that impact the brain does not sit well with me.

What will be said about PD drugs in the future?   I am not sure I want to find out.  This is why I am choosing to try and wean off as many of the PD drugs that I can.  I want to continue to pursue  my more holistic approach of diet and exercise to tame the PD dragon.


Welcome to my Pity Party

Article originally appeared 10/2/2018 on party hats

Today began with a Pity Party and I had to take out the hats.

Like most PWP (People with Parkinson’s), our days, even our hours and minutes, are roller coaster highs and lows.  My day started extremely low and my Pity Party started as soon as I shakily got out of bed. I was totally fatigued even though I had a good night’s sleep.

What is a Pity Party?

In 2007, I battled tonsil cancer and Steve, my late life partner, was by my side at the time with his steadfast support.  Critical to my healing and recovery was Steve’s ability to help me keep my sense of humor.  At one very low point during radiation treatment, I was whining about my pain and Steve said, “Do you want me to get the hats?” I asked, “What hats?” Steve replied, “Hats for the Pity Party.” We both laughed so hard. From that moment on, I knew I would survive cancer.

I bought some party hats that we would frequently bring out whenever one of us was having a Pity Party.  The hats never failed to bring a smile to our faces.

Why was I having Pity Party today?

As I struggled to get dressed this morning, my sports bra was not cooperating with me. I had to battle to put it on and I broke into tears of frustration after I realized I put it on inside out. Only PWP could truly understand the despair over an experience like this.  One would later tell me she would have left it inside out.  I will file these words of wisdom for the next time.

Next, I had no confidence in my ability to move without knocking things over or bumping into furniture. I was depressed, I was so apathetic and I was not feeling motivated to go to Rock Steady Boxing (RSB) this morning.  Then I tried to organize some paperwork into piles that made sense and I was dumbfounded!  I could not figure out how to do this so I suspect my cognitive skills are starting to fail me.  My disease is progressing.

How did I handle this setback?

Almost as if Steve was whispering in my ear, I realized I needed to put away the Pity Party hats and get on with my day.  I needed to go on auto pilot to head to RSB class.  If I thought about it too much, I would not have gone since I knew it would be a tough workout.

Why was this class different?

This week marks the one year anniversary of when RSB was first offered in Sag Harbor.  As is her custom, at the start of each class, Sensei Michelle has both volunteers and participants gather in a circle and asks each of us her question of the day.  This is so that we all get to know each other better.  These questions can be something like “What is your favorite movie?” or “What did you do this holiday weekend?”

What was the question of the day?

Today, Sensei Michelle asked us to reflect on what RSB means to us.  It was an emotional moment for most of us.  Sensei Michelle said after all her years of teaching martial arts, she has found her calling in coaching RSB. Some of the volunteers indicated they found the students so inspiring.  Another volunteer’s late father had Parkinson’s Disease (PD) and she wanted to help others with PD.  The common theme among the students’ responses was that they loved the camaraderie and support we all get from the class.  More than one student indicated that fellow participants are like family.  Others shared that they would be isolated if not for RSB and the socialization with others who understand what it is like to have PD is invaluable.

Time to get busy!

It was time to get to work and although I felt so fatigued, I was able to live in the moment of this class and push myself through the drills.  As we finished up the class, Sensei Michelle put me on the spot and said I was going to break wood again, only this time, it was 2 pieces of wood vs. the one piece I had broken nine months ago.  She knows me so well. I did not know she was going to do this so I had no time to stress about it.  It was the roller coaster ride high I needed today. It is the times of triumph like this that keep me going.  For the briefest of moments, I was able to remember what it was like to feel strong and confident before I slipped back into my current reality.

Sensei Michelle, thank you for believing in me and giving me the gift of a glimpse into my former self!  Thank you RSB volunteers and my fellow boxers for your incredible support and encouragement, not just today, but throughout the year.  All of you inspire me to continue fighting this disease.

Every successful individual knows that his or her achievement depends on a community of persons working together.” – Paul Ryan

Breaking Wood Part 2



Forty-two months

2015 st jm dinner at candle west cropped

“Behind my smile is a broken heart, behind my laugh I’m falling apart. Behind my eyes are tears at night, behind my body is a soul trying to fight.” – Author Unknown

The photo of Steve and I is the last one of us together before he passed.  It was taken at one of our favorite Manhattan restaurants in January 2015.

Where has the time gone?  It has been three and a half years since Steve died by suicide on March 15, 2015.  Yet, sometimes it feels like yesterday that I got the call that forever changed my life.  Other times it feels like the happy life I had with Steve happened decades ago.

I still go to bed at night with Steve as the last thing on my mind as I woefully glance at the empty side of the bed.  When I wake up in the morning, it is Steve I think of first and I wonder where has he gone.  Another day begins without Steve and sometimes I still feel so lost without him.  My belly laughs are no longer so deep or hearty.  My smiles are fewer and farther between.  There is still a huge void in my life that will never be filled.

Life with Steve was always a great adventure.  Even after having been together for over thirty years, he loved to take me on “dates”.  Steve was always full of surprises and on more than one occasion, he would ask me if I wanted to take a drive to NYC and perhaps go to the SoHo Apple store (he was a geek at heart) and follow that with a meal at a South Street Seaport Italian restaurant, topped off with a Jack’s coffee.  Other times he might try to find an excuse to go to Connecticut just so we could get our favorite pizza at Pepe’s in New Haven.  Our great adventures usually revolved around food. When Steve was alive, I used to live to eat, now I just eat to live.

People tell me I was so lucky to have lived such a wonderful love story for so many years; that some people never get to experience the kind of loving relationship that Steve and I had.  This may be true.  However, what well-meaning people don’t understand is that my pain is that much deeper and my grief is that much more lasting because of that great love story.   Suicide adds even more complexity to my feelings as there are so many questions that will never be answered.  How could Steve possibly think his loved ones would be better off without him?  (he verbalized this on more than one occasion)

Now, in my life without Steve there are no more great adventures. Every day, when I wake up, I now must focus on trying to get out of bed and forcing myself to move to help slow the progression of my Parkinson’s Disease.

I have been told by many that I look fine on the outside.  However, internally, I am wasting away from a broken heart and a progressive, incurable disease. I am getting weary.  Maintaining the façade of “all is well with me” is getting harder and harder to do.

When people tell me I was lucky to have had such a great love or that physically, I do not look like I have Parkinson’s, I want to shout to the roof tops “you have no idea what I feel like inside!”.

When one has something that is exceptional, whether a great relationship, good health or an athletic ability, and that gift is tragically taken away, the pain of loss can be so much deeper.  I was a very fit, healthy athlete and had an amazing and loving relationship for over thirty years before Steve died and my health started to deteriorate.

Even though Steve has been gone for over three years, I am still trying to come to terms with his loss and the loss of my good health.


You will never know true happiness until you have truly loved, and you will never understand what pain really is until you have lost it.” – Author Unknown





rsb drill 2

Article originally appeared 9/18/2018 on

“Complacency is a continuous struggle that we all have to fight.”   — Jack Nicklaus

Complacency setting in

It has been about a year since I first started Rock Steady Boxing (RSB classes).  It has been a great journey, filled with many triumphs and yes, a few meltdowns.  However, I was starting to become complacent and over-confident in my abilities.  I have experienced this complacency in the past when I used to dance.  Whenever I took a dance class from a different instructor, I sometimes struggled with the new style of choreography.  My body was so used to working with my previous teacher week after week. Their dance moves had come to me so naturally.  Just because I studied dance for many years did not imply that I would quickly learn new and different ways to use my body.I had become complacent.

Recently, I took an RSB class that brought me back to that complacency I experienced in my dancing days.  It was a good reminder and a lesson in humility for me.

Why was this class different?

The RSB coach (Coach Michelle) I have been working with took the week off.  I wanted to continue my streak of attending class every week so I went to another location to take a class from a different RSB coach (Coach Seth).  As it is with most coaches, both Coach Michelle and Coach Seth have their own unique styles.   The RSB organization provides a focus for the week, however, each coach may use different drills to support that weekly theme. The RSB focus for the week was footwork agility.

Cognitive challenge

We did a drill that I had never done before and not surprisingly, I failed miserably.  My processing speed to get my feet to perform the footwork drill quickly was definitely impaired.  Most people in the class thought I was moving fast, but I knew my accuracy was poor.  My previous dance background provided many opportunities for me to hone my ability to learn choreography. This skill is now adversely affected by Parkinson’s Disease (PD).  The fact that I am a perfectionist and always very hard on myself made me feel that I was not up to par on performing this drill. My neurologist reminds me I used to go at 85 MPH and now since I have been diagnosed with PD, my speed is closer 55MPH.  Of course, this does not sit well with me, I want to be speedy with accuracy!

What lessons do I take away from this class?

This particular class was a humbling experience for me.  I should not set the bar so high in terms of my performance.  I need to be kinder to myself.  No longer am I the dancer I used to be and I must acknowledge my new reality.  There is no resting on my laurels and I can never let my guard down when battling this disease.

“We shall have no better conditions in the future if we are satisfied with all those which we have at present.”  — Thomas Edison

For your Eyes Only

for your eyes only1990 new mexico in love

Yes, it was love at first sight. I feel that after all these years, I have finally found my soul mate.” –Barbara Hershey

Jones Beach, NY, Saturday, August 29, 1981

It was a “love at first sight” encounter between Steve and myself that evolved into an everlasting love story.   We were both so smitten with each other, that Steve wrote a short story about how we met and fell in love and I followed suit. Steve called it For Your Eyes Only, after a movie that came out that year.

I recently found the handwritten story Steve had given to me in December of 1981.  Also, with that treasured gift, I found my version of our meeting that I had written for Steve.  Below is what Steve had written in its entirety and excerpts from my version of that week follow.

Through Steve’s Eyes and in his Words:

Jones Beach, NY, Zach’s Bay 1:00pm

Once upon a time a young man named Steve was on a run with two of his friends.  They usually ran only four miles, but today, they had decided to go six miles which would take them through Zach’s Bay.  Steve had been running all summer and the runs were always predictable.  The scenery, the pain, the sweat; it was all very predictable. But today was different. Today, Steve was to fall in love with a beautiful girl named Jean.

As they ran past the bay, Steve quickly noticed three roller skaters, but after having run four miles already, he was too wrapped up in the pain to really notice how attractive Jean was. As though Jean knew it was important, she started oohing and ahhing to get his attention.  And she did, because Steve looked over his shoulder and gave her the sexiest half smile ever. The runners motioned for the girls to follow and after Jean tripped, the roller skaters started following the runners through the parking lot at Zach’s Bay. The girls had on Sony Walkman’s and as they skated, they let the runners listen to them.

Steve had been running about ten yards behind Jean and was fixated on her lovely legs and purple Dolphin shorts. It was very strange because even without being introduced there was a twilight zone attraction between Jean and Steve. Just as Steve was yearning to talk with Jean, she slowly looked around and her eyes looked right into his with a feeling that almost knocked him out. Before he knew it, Steve was at the end of the lot and it was the point where the roller skaters had to part. He wanted to ask her out right there but it was all happening so fast that the best he could do was help his friends invite them to a lifeguard party that night.  Steve felt really awkward, almost like a little kid, because he looked right at Jean and said “you will come tonight won’t you?” He was extremely pleased when she answered “definitely”. As they parted he kept gazing back to watch Jean skating off in the distance.

The rest of the day was a fairly restless one for Steve. He kept thinking of Jean, hoping she would come even though he was very nervous at the thought of conversing with her.

Jones Beach, NY Field 1, 5:15 PM

Steve was sitting on the main stand and kind of depressed because the weather has turned sour and he thought the girls would figure the barbecue was off. He was lazily gazing out at the ocean when the phone rang. It was Greg, one of the other runners. He was hysterical and was yelling that the girls came down and while he took a shower some of our buddies just let them take off. Steve looked back up the beach and saw them skating on the boardwalk headed towards Field 2. When Steve told Greg where they were, Greg told him to run up the beach immediately. Steve jumped off the stand and made it up the beach in record time.  As he got to the lifeguard shack, Eddie (the third runner) told Steve to get in Greg’s car.

Steve then saw Greg revving up his Datsun and with the passenger door open. Steve only got one cheek on the seat when Greg already had the car screeching out of the lot. They pulled into Field 2 and Greg skidded to a stop on the boardwalk. They both popped out of the car and waited for the girls to skate up. Steve just sat on the railing and try not to look too excited about seeing Jean again.

When they went back to Field 1, Jean and Steve talked some more and then Jean asked Steve if he wanted to take a drive to the airport to pick up a friend. The two of them were a sight to behold. It seemed as though they had been both struck by Cupid. The only thought that kept rolling around in Steve’s head was that there was something special about this girl, really special.

The ride to JFK was an awkward and exciting one for both Jean and Steve. The conversation was very stimulating, especially when Steve told Jean he thought she graduated in 1975 and her eyes started to glow (only the first of many times Steve has made her eyes glow).  By the time they got to the airport, they already felt like they knew each other really well.

After picking up Jean’s friend Vanessa, they went to Aspen’s for a burger and probably the corner table there will never be the same. Afterwards, Steve walked Jean and Vanessa to their car and he was nervous about seeing her again. He felt as though she wanted a good night kiss as badly as he did, so he leaned into the car and practically broke both their noses in the attempt. They finally parted after some more great conversation (mostly giggling), with Jean asking Steve if he would call her in the morning.

Sunday, August 30, 1981, 4:00 PM

Steve had been debating all day if it were wise to follow up on this girl because he knew there were problems ahead. He thought that after one date with Jean, they might definitely fall in love. Finally, he realized fate had brought them together and he didn’t want to pass up the chance to finally meeting a truly wonderful person.

As the phone rang about ten times, Steve was almost ready to hang up but then heard a loud clunk and a bang and a giggly hello. He realized Jean had tripped while running to answer the phone.  All of his reservations vanished when Steve heard how excited she was to hear from him. Jean invited him to go skating that night and although he wasn’t into skating, he said yes.

After work, Steve drove to Jean’s house and she met him about half a mile before he got there. He remembered how pretty she was and that day she had on white Dolphin shorts. They went skating and had many laughs, both trying not to let the other know how attracted they felt to each other. The attraction was stronger than anything they had ever felt.

After skating and watching a gorgeous sunset they went back to Jean’s place and Jean made them fresh orange juice. It’s funny how some things that later would bother Steve, meant nothing to him then because he really wanted to know Jean before getting bent out of shape about peripheral trash even on this first date. They both realized they were falling in love.

With a show of great will power they ended the date with a kiss.  Jean walked Steve to his TR6. The date had gone well and on the ride home with the hot summer breeze in his hair, Steve thought to himself that this was only the first date of a long and lasting relationship with Jean. With that thought in his head he cruised west on the Southern State Parkway with a big smile on his face in wild anticipation for the future.

Through Jean’s Eyes and in her Words:

Jones Beach, NY, Zach’s Bay, 12:30pm and beyond

It was a typical hazy Saturday afternoon in August as my friends and I laced up our skates at Cedar Creek Park. Little did I know that today, something was going to happen that would profoundly affect my life.

The skate on the path was quiet and uneventful. We decided to go to Zach’s Bay and get a drink before we turned and headed back to the park. As we sat and talked about how depressing it was that the summer was coming to an end, I looked to my right and saw a sight to behold! Three unbelievably good-looking men with outrageously built bodies were running through the bay. The guy in the middle was to die from!! I had always said I was going to meet the man of my dreams on the Jones Beach bike path and as the sexiest half smile I’ve ever seen lit up the face of the runner in the Bill Rodgers shorts, I knew he was the one.

Then something came over me that even to this day I can’t explain why. I started catcalling and skated after those heavenly bodies with my eyes glued to the runner in the middle. As the guys rounded the corner to the parking lot, I figured I’d head them off at the pass. There, as I was trying to impress them with my infinite gracefulness on skates, I ended up landing on my ass.

I quickly picked myself up and resumed the chase. My friend Lynn ended up skating alongside Greg and I was letting Eddie listen to my Sony Walkman as he ran. But where was the man of my dreams?? Almost as if he read my mind, Steve came up alongside me and asked if he could listen to my tunes.

Eddie, Greg and Steve were lifeguards at Field 1 and they invited us to a beach party at 5 o’clock that afternoon. As we parted to go our separate ways, Steve turned around and said to me; “make sure you come back”. I smiled and said we will be there and thought to myself that I wasn’t going to miss this for the world.

As the day progressed the weather worsened and while I paced back-and-forth in my living room, I asked Lynn if she thought they would have a party even if it rains. She said “sure, we will go anyway, what do we have to lose?” The thought also occurred to me that maybe these guys are just playing games and there was no beach party.

Five o’clock rolled around and Lynn and I drove to the beach. When we got to Field 1, Greg was there but he looked surprised to see us. He talked to us for a few minutes then disappeared into the locker room. Eddie dashed off to the lifeguard shack and Lynn and I were left standing there wondering what was going on. So, not feeling like we were wanted, we skated the boardwalk to Field 2. I was so sad. Steve was nowhere to be seen. As I was trying to console myself by thinking he was your typical womanizer lifeguard with many girlfriends, I saw two figures up ahead. One was standing in the middle of the boardwalk blocking our path and the other was sitting on the railing. As we got closer, my heart jumped because I saw that gorgeous smile once again and knew it was just for me.

Back at Field 1, Steve and I talked a little and the sparks were flying! When he told me he was a student at Stony Brook, warning signs started flashing in the back of my mind because I realized he was more than only a year or two younger than me. I had initially figured he was about 24 or 25 (I was 27). I thought to myself that I should not get involved as he is too young. But, the attraction was too strong.

I glanced at my watch and realized it was time to pick up my friend Vanessa at the airport. I asked Steve if he wanted to go for ride and was ecstatic when he said yes. We talked some more and I found out he was only 20.  I told myself I’d worry about that later, realizing that the more I talked to him the more I wanted to know him.

After we picked-up Vanessa at JFK, we headed to Aspen’s for a bite to eat. When it was time to leave, Steve didn’t want me to go and I hated to leave him. Vanessa was in NY just for the night and I really had to go. He said he would call and I thought to myself this is too good to be true. What could he possibly see in me? Being as handsome as he was, I was sure he had plenty of girlfriends. So needless to say, I just about held my breath until he called on Sunday. We set a date to go skating that night. That was the first of several nights we went out that week with each time bring us closer and closer to each other.

After having known Steve for only a week, I realized that I was intensely in love with this man and my life would never again be the same.

In the beginning I was very insecure about Steve’s feelings towards me and I was always kidding him about taking the 6:40 train to leave town.  As time went on we grew closer and closer and slowly but surely all my insecurities faded away. It was becoming more and more difficult to be apart from each other.

Steve is truly the man of my dreams. He’s so affectionate and gentle and yet he is also a pillar of strength for me. There will be problems in this relationship, mainly due to our age difference. However, Steve and I both realize this and we know that we can overcome any and all obstacles because our love for each other is immense and it will give us the strength we need.

This is not the ending to my story. It is only the beginning.  There’s a big beautiful world out there and Steve and I are going to explore it together; sharing our tears and fears and our joys and happiness.







Invincible – NOT!

rsb 2

I was invincible, at least that’s what I wanted you to think, and I wanted me to think it, too.”

— John Sweeney

Today, the walk from the parking lot to the boxing gym was especially hard.  I had a feeling this challenge was a pre-cursor for what was to come in class today.  This morning, I really had to push myself to go to Rock Steady Boxing.  I woke up exhausted, so much more so than usual, as I was banging into things and struggling to find some balance.  However, after I had breakfast, played with my bunny and meditated for twenty minutes, I felt somewhat better and started my one-hour journey to my Rock Steady Boxing class.

At times, I have considered myself invincible.  After all, if I survived cancer and the suicide of the love of my life, I can surely fight this progressive and incurable illness called Parkinson’s Disease (PD).  Today, I was not invincible.  My energy levels were low and even though the intensity of the class was no more difficult than usual, I was really challenged.  It finally got to the point where I couldn’t continue.

Periodically, whether it is from the disease itself or the side effects of my medication, I will get extremely nauseous, dizzy and weak and feel as though I will blackout.  When this happens, I must get horizontal immediately.  Typically, the feeling will pass in a few minutes and then I am okay.  Kind of like when I have gotten seasick in the past.  Once I got off the boat and stopped rocking, I was back to normal.

In the middle of a drill towards the end of the class, I had to “get off the boat” and I moved as fast as I could to lay down on a bench.   I was crushed that I had to give in to my symptoms, especially in front of my fellow boxers.  I did not want to be perceived as weak or losing a battle to this disease.

The feeling did pass and I got back on my feet, ready to start the class again.  I could see the concern in the eyes of the coach, the volunteers and my fellow boxers and their support buoyed my spirits.  The rest of the day, I had to lay in bed to recover.  PD may have won a battle today, but, I learned that I cannot always be strong and sometimes it is best to retreat and come back to fight another day.

Let not others define you, make yourself strong and able to define yourself. When you accept yourself with your worthiness and weakness, you are invincible.”

—  Dr Anil Kr Sinha



rock steady3

Photo Credit: Michael Heller


Alone we can do so little, together we can do so much.” –Helen Keller

Today did not start out well.  I woke up at 1:30am with a terrible headache and still had it when I got out of bed at 7:00am.  Fatigue was ever present and I knew I would have to push hard to go to Rock Steady Boxing today.  I was wondering how I could possibly keep up my energy level to get through class.  I had visions of myself laying on the bench while everyone else would be boxing.

I am so glad I pushed myself to get to class today.   One if the best things (and there are many) about Rock Steady Boxing is the support and camaraderie all of us experience while in class.  Although we are all at different stages of the disease,  we each have our own unique daily challenges.

Part of our class preparation is the wrapping of our hands.  As I observed my fellow PD sufferers today performing this pre-class ritual, I was filled with emotion, almost to the point of tears.  We were all dealing with some PD related issue of the day, whether it was fatigue, tremors, or difficulties with medications.   Yet, we all came to class in spite of our individual difficulties. We instinctively know that this class is the best thing for us. I am honored to be a part of such a dedicated group of people.  Some say I inspire them (I am in the earlier stages of PD, so my symptoms are not always readily apparent), yet, it is they who inspire me!

The support we give each other in class is palpable and the coach and volunteers are always there for us with compassionate eyes.   This is not to say they go easy on us.  Quite the opposite.  They inspire and motivate us to push harder, yet they also know when to back off.

As we performed our drills today, we all enjoyed a few good laughs and we all motivated each other with our cheers of encouragement.  After class was over today, I believe most of us were so glad we came.  Camaraderie was the catalyst that had many of us feeling a lot better leaving class than when we first started.


Rock Steady!


Fight, Fight, Fight