Camaraderie

rock steady3

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.

WHO ARE WE?

Rock Steady!

WHAT DO WE DO?

Fight, Fight, Fight

Advertisements

I must remain vigilant

Stony Brook Southampton Hospital, Center for Parkinson Disease Boxing Program

Be vigilant, for nothing one achieves lasts forever.”  — Tahar Ben Jelloun

It is time to take out the party hats again.   I am starting to descend into pity party territory.

It has been a tough week with the loss of my twelve-year-old beloved pet bunny Snoopy.   Once again, I was feeling guilt.  Could I have done something differently that could have  saved Snoopy?  This feeling was reminiscent of the regret I experienced over what I should have or could have done differently to save Steve back in 2015 when he died by suicide.

This week, my balance has not been great, my fatigue is off the charts and I am clumsier than usual.  Is this a temporary setback due to the stress and sadness of losing my bunny who was so much of a part of my life with Steve?  Or, is my Parkinson’s Disease (PD) progressing, precipitating an increase in medications?

People that know me may say that I look fine and nothing has changed in my symptoms.  However, I can feel the difference, having been so in touch with my body for many years training as a dancer and athlete.

Since I truly believe exercise and movement are key to maintaining my quality of life and possibly slowing the progression of PD, I really have to force myself to work out daily.  Now, I can barely get through an hour of exercise without feeling so weak and drained. As I laid on the floor of the gym today to do my abdomen exercises, all I wanted to do was close my eyes and go to sleep.  However, even if I had done this and fell asleep, my fatigue would not have been quenched, such is the nature of the PD fatigue I suffer from.

If I let up even just a little bit on all the exercises I must do to retain function, my symptoms will worsen. As an example, while I was away for a week in early June, although I continued with some forms of daily exercise, I did not practice my speed bag.  When I returned home and resumed my speed bag routine (5-10 minutes/day) I noticed a huge loss in my stamina, speed and technique, especially on my left side.  The functionality of my left arm and leg are impacted by PD much more so than my right side.

So, I must remain vigilant and continue practicing movement to battle Parkinson’s Disease.  I will stay the course on my current medications and not rush to increase them for now.

I will persevere.

I am a fighter. I will stand strong. I will stumble and I will fall but I will never give up.

It might take longer at times but I will stand back up and keep fighting.”

http://www.lessonslearnedinlife.com

http://www.SlippedAway.org

 

Accepting loss once again

The reality is that you will grieve forever. You will not ‘get over’ the loss of a loved one; you will learn to live with it. You will heal and you will rebuild yourself around the loss you have suffered. You will be whole again but you will never be the same. Nor should you be the same nor would you want to.” – Elisabeth Kubler-Ross

Losing Steve to suicide over three years ago is obviously very different than losing a pet rabbit.  However, many of the same emotions of guilt and regret have re-surfaced which makes the loss of my bunny so much harder to recover from.

Snoopy Bunny died on June 20, 2018.  Three days later I am still so weepy.  I stare at his empty cage and food bowl and it reduces me to tears.  I find myself re-living some of the questions I asked myself after Steve took his own life.  Did I miss or choose to ignore some signs of what would eventually come to pass?  Could I have done more to help?  Should I have sought out some professional advice sooner?

I had Snoopy for over twelve years.  Steve and I rescued him in 2006. We became reluctant pet owners and Snoopy entered and lived in our hearts and became a part of our daily life.  Snoopy made us laugh so much and we loved his cute little antics.

There is no pain so great as the memory of joy in present grief.” – Aeschylus

You may be thinking to yourself: “it is only a rabbit, get over it”.

Until one has loved an animal, a part of one’s soul remains un-awakened.” – Anatole Franc

I will always remember the first day Steve and I brought Snoopy home. Snoopy was so frightened.  Steve picked him up and Snoopy urinated all over Steve’s leg.  Another memory floods back to me of when I had cancer in 2007 and was undergoing radiation treatments.  Sometimes I would lay on the floor, crying in pain.  Sensing my distress, Snoopy would “bunny kiss” away my tears.

Snoopy shared my home office with me for over 4 years until I retired in 2010.  My former co-worker can attest to the conference call meetings we would have where Snoopy was vying for my attention and distracting me from the call.  When calls got heated, Snoopy would get into things he shouldn’t be, like chewing on a cord.  Most times, Snoopy would quietly sit by my feet under my desk.

Many house rules that Steve and I established were broken by Snoopy.  Steve and I agreed that Snoopy would live in my home office and not be allowed in the other rooms of the house.  The previous owner of our home had a cat and there was cat fur all over the house when we moved in, as such, we did not want to see rabbit fur balls all over our house.   Well, it did not take long before Snoopy was running into the living room and breaking the first and second barrier, which was only humans were allowed on the furniture.  Sometimes Snoopy would come into the living room and jump on my lap while I was watching TV.  How could I possibly put him back on the floor?  He was just looking for attention and affection.

The final barrier that Snoopy smashed was jumping on the bed.  Steve and I were adamant that Snoopy would not be allowed on our bed. When I would wake up in the morning, I would let Snoopy out of his room and sometimes he would wander into the bedroom.  If I didn’t feed him on time, he would jump up over 2 feet on to the bed and stare at me, waiting for me to feed him.

 

I should know enough about loss to realize that you never really stop missing someone-you just learn to live around the huge gaping hole of their absence.” – Alyson Noel

And so, life does go on, this time with both Steve and Snoopy gone from my life.  Once again, I must accept my losses and be grateful for what I have.

http://www.SlippedAway.org

 

 

 

Another good bye

Snoopy was one of the earlier bunnies rescued by Long Island Rabbit Rescue Group (LIRRG) as it was starting up so many years ago.  I clearly remember the day Steve and I first saw Snoopy.  He was a baby, resting on the side of a grassy hill at Cedar Creek Park in Seaford.  Steve used to conduct bike/run workouts for his triathlon team every Tuesday night.  We would bike the 1 mile loop and we would see Snoopy and a bunch of other domestic rabbits wandering around in the park weekly in the fall of 2006.  Steve and I instinctively knew these bunnies were not meant to be outdoors as they stuck out like sore thumbs with their white fur and would make for easy prey.  We thought for sure there must be a rescue organization for rabbits that could help these bunnies.  So, off to the Internet I went and did a google search.  I found LIRRG and connected with Angela DaSilva and Greta Guarton.  I was told the same thing I repeated to so many finders over the years as an LIRRG volunteer; there is no shelter, but if one can foster or adopt, LIRRG would provide supplies and education.  So, Steve put out the word to the 300+ athletes on the triathlon team asking if anyone could foster or adopt.  Two people said yes and we gave LIRRG the go ahead to rescue.  Steve and I had fallen in love with Snoopy with his unique heli-lop look, but LIRRG said there was no guarantee they could capture him specifically (there were probably about 8-10 domestic rabbits loose in the park).  I guess Steve and I were meant to have Snoopy because he took the banana bait.  The two people who said they would foster fell through and Steve and I looked at each other and said, I guess we are bunny owners now.  Steve loved both Budgie and Snoopy, but he always said he liked Snoopy best.

The youtube link below was made by Steve.  It was Snoopy’s bedtime ritual, something we did every night including the night before he passed.

https://youtu.be/8rSjav0531M

Over the past few weeks, I thought to myself that Snoopy would not be with me for much longer.  There was no one sign; he was eating and pooping well and still loving his treats and was as cantankerous as ever.  Occasionally, I would see him staring at the floor almost as if he was in a trance.  On Wednesday night, it seemed as if he might be having a bout of stasis coming on and I did my usual; gave him simethicone, massaged his belly and made him walk around.  He was his usually cranky self and did not like it when I made him walk.   I felt he needed some extra TLC and held him in my lap for an hour that night.  Snoopy enjoyed his treat ritual although he had not eaten his dinner pellets (sometimes he would like to munch on them late at night) so I was not concerned.  Thursday morning I woke up and his pellets were still there and Snoopy was listless, laying under his hidey box.   That is when I first posted his status to the LIRRG Facebook page and took him immediately to the vet.  My current vet consulted with Dr. Saver (Snoopy’s vet for 11 years before I moved) and they did all they could to save him.  He deteriorated rapidly.  When I called for an update at 5pm on Thursday, the vet said he may not make it through the night.  Snoopy’s white blood cell count was way off and he was anemic.  The vet said he had a massive infection and since antibiotics were not helping, it was probably viral in nature.  Older rabbits tend not to do so well with these types of viruses.  I immediately left to go to the vet to say goodbye to Snoopy.   When they brought him in to me, he looked so sad and defeated and I cuddled and kissed him.   It was so hard to leave him there, knowing I may not see him again.  Five minutes after I got home, the vet called and said Snoopy had passed.  I was so thankful I had a chance to say good bye to him and that I did not have to make the decision to euthanize.

Just as Steve did, Snoopy Slipped Away.  My heart was broken once again and memories of Steve, Snoopy and I washed over me.   RIP Snoopy Bunny, may you have crossed the rainbow bridge into Steve’s arms.

 

438

 

2018 pl220 mnf438

May 27, 2018 was more than just the date of EventPower’s Mighty North Fork Triathlon for me.  It represented a highly emotional convergence of my past, present and future life.  I was a participant in this race for the first time on a relay team (Bib# 438), walking the 3.5 mile run course.   Although my destination was the finish line, it was the journey that has inspired me to write.

I thought I was done with triathlons; my past

My late life partner, Steve Tarpinian, created EventPower.  Steve’s vision helped to lay the groundwork for the sport of triathlon on Long Island. In 1999, he created the Mighty Nork Fork Triathlon in Southold, on the North Fork of Long Island.  For many years, I was by his side, behind the scenes, helping him in whatever way I could while he created his triathlon team (TTT) and his coaching and event company.  This would include everything from directing traffic on the race courses, designing and ordering team clothing or helping him handle and organize general back office functions for his growing company.    Although I had my own career, I was still immersed in Steve’s world for many years.

Michael, a student athlete Steve had once coached, participated in the event this year for the first time in many years.  Michael contributed Chapter 3 to Slipped Away, Steve’s memoir.  Mike, Michael’s father, passed away in February this year.  Mike was a great friend and support for me when Steve passed away in 2015.  We graduated high school in 1971 but went our separate ways after that.  Mike and I reconnected our friendship through Steve at a triathlon back in the 1990s. Mike and his family lived around the block from Steve and me.

A new-found passion; my present

After Steve passed, I felt the need to inspire conversation about mental health issues and suicide in an effort to reduce the stigmas.  I was drawn to help veterans’ organizations that provide unique outlets for veterans suffering from PTSD and depression.  Project9line uses the arts and Airborne Tri Team (ATT) uses endurance sports.  Both organizations are the beneficiaries of all the proceeds for the two books I have published, Slipped Away and A Mouse in the House, a children’s book written by Steve in 2012.

Several of the ATT members were participating in the Mighty North Fork Triathlon this year and were sporting their team’s racing gear that I helped to design.  On the back of their shirts, they have included Steve’s TTT logo as Steve was an inspiration to Ron, the founder of ATT.

Where I am headed; my future

Both of my relay partners live in my new community, Peconic Landing in Greenport.  Neither had ever participated in a triathlon or knew much about them.  Louisa, the swimmer and Robert, the biker were great team members and I was so inspired by their willingness and excitement to participate in the event.  Our team name was PL-220 which represents our combined ages.  I am sixty-four, so you can do the math to figure out the approximate ages of my team mates.

Race day; the convergence

Having a sleepless night before the race, getting out of bed at 4:30am and Michael getting ready for the event that morning in his TTT gear (Michael, his Mom and Michael’s girlfriend stayed at my house on the weekend) brought me back to when I used to accompany Steve to the events.  Hearing the howling wind and seeing the dark skies that morning did not set a good tone for me, but I persevered just as Steve and I had always done on race morning, even when the elements were not cooperating.

Arriving at the race site and seeing all the familiar faces of the loyal staff members that worked for Steve for many years brought me to tears and I was flooded with so many fond memories of times I worked at this event over the years as a staff person.

The weather conditions were really deteriorating.  The skies were ominous, ready to open up with a flooding rain and the strong wind was churning up white caps on the swim course.  The fact that the air temperature was only in the 60’s did not help.  Fearless Louisa entered the water with the rest of the athletes and she pushed through the 500-meter swim admirably and handed over the racing chip to Robert in the transition area.  Robert headed out on to course with his bike to complete the seven miles.  While waiting for Robert to return, I was able to cheer the Airborne Tri Team members as they headed out on the course and returned to cross the finish line.  Luckily, the rain pretty much held off while Robert was biking.

When Robert returned, the rain had started with a vengeance.  He passed the chip to me and I headed out on the course.  The first part of the run course was on the sand. As I slogged through it, I felt like icy pellets of rain were hitting my face.  I was miserable and had another tearful meltdown.  But, I kept telling myself I have survived cancer, lost two people very close to me to suicide and have a diagnosis of Parkinson’s Disease.  I’ve been through far worse than walking in this cold rain; I’ve got this!

After an hour of loneliness in dismal weather walking on the course, I finally finished.  Along the way I saw some of the inspirational quote signs Steve had created (the new owners of EventPower have done much to preserve Steve’s legacy and what he created).  Another crying meltdown, but it warmed my heart to see these signs.  As I entered the transition area and headed to cross the finish line, several of the EventPower staff and friends and staff from Peconic Landing were there, cheering me on to finish.

I was the last finisher of the race, but, I was able to experience firsthand something I had always done when I was a staff person.  Steve instituted a tradition for all his events that called for staff members to cheer in the final finisher.  He felt that every participant mattered, whether it was the first or last athlete to finish the event.  For the first time, I was able to be on the recipient end of this wonderful tradition Steve created and it felt great. Once again, I was reduced to tears, but they were tears of thanks and happiness.

I am in a good place now in my life and I am optimistic about my future.  The day after the race, I saw Robert proudly wearing his Mighty North Fork T-shirt and finisher medal. I am thrilled I was able to introduce someone from my future life to something from my past life and it resulted in having a positive impact on them! I think Steve would be pleased.

www.SlippedAway.org

Acceptance, Gratitude and Attitude

serenity-prayer2When I started counting my blessings, my whole life turned around.” —Willie Nelson

My good friend Mike ‘s prayer card had a quote that has truly resonated with me. I believe it marks the beginning of an important turning point in my life.

Since I was diagnosed with Parkinson’s Disease(PD) seven months after the suicide of my soulmate Steve, in 2015, I have been in denial and refusing to accept that I have this disease.  Part of that denial was refusing to take any prescription medications.   These medications can only potentially relieve or mask the PD symptoms.  The drugs can be very expensive and do not help everyone and as it is with most medications, they can have very bad side effects.  Over time, as the disease progresses, the drugs start losing their efficacy and dosages need to be increased at the risk of incurring more and/or stronger side effects.   PD is incurable and no medication is known to stop the progression of the disease. My holistic alternatives to achieve some symptom relief and possibly slow the disease progression consist of weight workouts, boxing, walking, eliminating sugar, gluten, dairy and meat in my diet, practicing yoga and meditation; all done in an effort to combat whatever neurological issues I was having.

Since many (doctors and other people with PD) have indicated to me that the drugs can be life changing and can greatly improve the quality of life, I finally succumbed and started taking PD medications a few months ago.  The ideal is to find the right ‘cocktail’ of drugs at a dosage where the symptoms are relieved with no or minimal side effects; a time consuming and frustrating process with no guarantees of success. The hope is that there will soon be a cure, therefore eliminating the need to continue to take these medications.   While I am skeptical that there will be a cure for PD in my lifetime, all I have is today and I want to live a quality life in the present moment.

I do believe I am now starting to see some improvement in my symptoms; my mood is more uplifted, I don’t experience ‘internal tremors’ (weakness and shakiness) all the time and my fatigue is not as bad.  I still suffer from bradykinesia (slowness of movement) and my fine motor skills (writing, typing, etc.) have not improved.  The progress I have made thus far could be from my boxing classes, my diet, the medications or a combination of all of these.  Or perhaps maybe it is because I have finally accepted that I will never be the same again, that I will never be the dancer or athlete I once was.  I am no longer in denial.  Whatever is affecting me neurologically is now my new reality.  I accept this.

Attitude adjustment and expressions of gratitude are also part of my healing process.  In the not too distant past, whenever I would see someone in the more advanced stages of PD, I would think to myself; “That is my future.”  Now, I am starting to reframe my thoughts.  If I see someone whose PD symptoms are worse than mine, I will remind myself to be thankful for what I have.  I can still live independently, I can still drive and I still have my cognitive skills (although sometimes I wonder about that LOL).  Since I am retired, my time is now used to doing activities that will help heal me.

I accept and understand that some of my symptoms may never be banished.  My hope is that the medications will allow me to continue to do my exercise program at a higher intensity and that in the long run, I will be able to achieve even more symptom relief and/or halt or slow the disease progression and possibly wean myself off the medications.  It will not happen overnight and it will be a long, slow process with many bumps in the road.    I understand and accept that I will have ‘off’ days, but, I do believe there will also be ‘on’ days too.

Just as I have finally accepted that Steve took his own life, I now acknowledge that I have PD.

Accepting the reality of my disease will not make it go away.  I believe acceptance will free me up to use the energy that I do have to fight the progression and symptoms of PD.

Acceptance of what has happened is the first step to overcoming the consequences of any misfortune.”  — William James

 

 

Rock Steady — on fire

rock steady4

 

 

“She’s living in a world, and it’s on fire
Feeling the catastrophe, but she knows she can fly away
Oh, she got both feet on the ground
And she’s burning it down
Oh, she got her head in the clouds
And she’s not backing down” — Alicia Keys

 

 

About two weeks ago, Michael, one of the volunteers in my Rock Steady boxing class told me I was “on fire” in class.  I knew exactly what he was talking about because there were moments (more than a few) where I felt strong and powerful while performing some of the drills. My energy level felt good and although I was still feeling tired, somehow, I was able to dig deep and really hammer parts of my workout.

Before I wrote about this experience, I felt the need to be sure it wasn’t just a one-shot deal and I wanted to get in a few more classes to make sure this was not an anomaly.  With Parkinson’s Disease (PD), there are good days (don’t have too many of those) and bad days and I wanted to see if I could produce the flames again in spite of my PD.  I am happy to say, for the next few classes, I re-discovered the ability to train hard, even if only for 5 or 10 minutes at a time.

As an unexpected bonus, in my last class, I found some of my lost rhythm as Coach Michelle had us dancing up to the heavy bag for our punching drills.  The energy levels were off the charts and my fellow boxers and I were having a blast, dancing with abandon!

That day, I had dedicated my class to my good friend Mike, who took his own life a few days prior. Mike was such a great supportive friend, especially during my times of great need after Steve died by suicide in 2015.   During the class, while the theme song from Rocky was playing and we were doing heavy bag drills, I had an emotional meltdown. I thought for sure, I would have a huge setback and my PD symptoms would rear their ugly heads with a vengeance.  Stress and emotional trauma can wreak havoc on those with PD.  However, my fellow boxers, Coach Michelle and the volunteers showed me such great kindness and support, I was able to persevere and finish the class.  Through their compassion, drawing on my newly found physical strength and thinking about the great courage Mike had fighting his battles and the great strength and bravery of his family kept my fire going.

After over four months of Rock Steady boxing classes, two times per week, I am starting to see a consistent difference in my physical abilities and my confidence is growing. I hold no illusions that I am “cured” and I understand that there will still be some bad days, but, I truly believe Rock Steady boxing will make a positive difference in my quality of life.

This girl is “on fire”.