Rock Steady

rock steady1

In my quest for Parkinson’s Disease (PD) symptom relief  and to slow the progression of the disease,  I have pursued various forms of exercise, group classes, natural dopamine, meditation, acupuncture, plant based, gluten free, no added sugar diet and prescription medication, all to no avail.

The last time I took a group class (Dance for PD® at Lincoln Center) for PD patients, I left it in tears, seeing how much I have lost to this illness and also seeing in the other participants, my potential future as the disease progresses.  The good news is, not everyone experiences the same or all the possible PD symptoms and the disease progresses at different rates in everyone.

This week, I attended my first  Rock Steady Boxing for PD class at Epic Martial Arts in Sag Harbor, NY.  It did not start out well for me.  There were about 10 of us, mostly men, all different ages and we were all at different stages of the disease; some with  walkers and canes , others dealing with tremors and some like myself, in the earlier stages of PD with no glaring symptoms.

One of the students (I will call her Mary) walked into the matted exercise area and tripped and did a face plant on the floor.  As she laid there crying, (one of the assistants immediately went to her aid), I could feel her helplessness, vulnerability and despair and it vividly brought back the memory of when I fell on my bathroom floor back in July.

Tears welled up in my eyes as I turned to a fellow student next to me and said:  “There but for the grace of  God go I”.  He knowingly and sadly shook his head in agreement.  All of the students  sitting there could easily empathize with Mary, either having fallen previously or realizing it was probably in their future.  It kind of reminded me of what Steve (my life partner who took his own life in 2015) would always say about bike riding: “There are 2 types of cyclists, cyclists who have crashed and cyclists who are going to crash.  With PD, it is probably inevitable that at some point, those  of us afflicted with this disease will fall if we haven’t already.

Michelle the instructor was a great motivator and in no time, the sad cloud of Mary’s fall dissipated and Michelle had us all engaged in the workout.  Mary, with great dignity and grace dusted herself off and joined the rest of us in class.

At one point during the workout, Michelle was coaching us to go faster as we were punching the heavy bags.  I thought this was hilarious since “fast” is no longer part of my vocabulary and I couldn’t stop laughing.  One of my most visible PD symptoms is slowness of movement.  With this disease, it is so critical to maintain one’s sense of humor, something I struggle with on a daily basis.  If I don’t laugh at myself, I will crawl up into a ball and waste away.

This class will be good for me.  I will not be alone in my struggles and I will form a camaraderie with people who  share the same challenges of PD that I have.  From what I saw in my first class, all seemed to be determined to fight this cruel and insidious  disease of countless losses and not give in to it.

Since my PD is progressing, I am becoming more and more cognizant of the lessons I need to learn from this disease and being in the class with fellow PD sufferers really brought it home for me.   The first lesson  is to always be mindful and focus on one thing at a time.  As an example, no more fumbling in my bag for something while I am walking as this is a sure way for me to lose my balance and fall.  The second is to be grateful for the simplest of things I have always taken for granted,  as any day, I can wake up and what was previously done without thought , now, can only be  performed with great difficulty.    These were daily rituals I had never give a second thought to;  things like buckling a seat belt, folding sheets, putting a key in a lock; all are such simple, mundane tasks.   With PD, they can become monumental, overwhelming and so frustrating.  One never knows what or when one  will lose the ability to do a routine task; something  you never thought twice about in the past.

My sincerest hope is that Rock Steady Boxing will be something that can help  slow down the progression of this disease for me.  My goal is to write a blog in a few months that can attest to the success of this program for me and that I can be a poster child for Rock Steady Boxing.  Stay tuned…

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Frozen

frozen

According to WebMD.com, in Parkinson’s disease, freezing (sometimes called motor block) is a sudden, brief inability to start movement or to continue rhythmic, repeated movements, such as finger-tapping, writing, or walking.

Well, my first episode of freezing happened this week.  I had just finished my bike ride and unclipped my right foot from the pedal and went to unclip the left foot.  Alas, the message I was trying to get my brain to send to my left foot was not connecting.  My left foot stopped moving, no matter how much I focused on trying to wiggle it out of  the pedal, the foot  wasn’t budging.  I even tried to take off my bike shoe and that didn’t work either.

So, there I stood, in the middle of the road (good thing it was early and on the grounds of my community; so no traffic), leaning over my bike, one foot on the ground and one foot stuck on the pedal, trying to figure out how I was going to get myself out of this predicament.  I knew that eventually, security would be making their rounds or one of my neighbors would have seen me, but, I was still filled with despair and did not want to be found frozen.  I don’t recall how long I was there, but eventually, I did ‘ defrost’ and  was able to unclip.

Clipping in and out of my bike pedals was something I had done without thinking for years.  Once again, PD has robbed me of such a simple task I had always taken for granted.  That is the way it is with this disease.

On the bright side,  I got back on the bike the next day but decided not to  clip in the left foot.  There is always a work around for the things I have lost due to this disease, but it does not make it any easier.

 

 

Suicide is a selfish act. NOT!

blog---Suicide-is-a-selfish-act

Today, for the first time since Steve died by his own hand in 2015,  someone said directly to me;  “suicide is a selfish act”.  I was not angry or insulted, but rather very sad that people still believe this to be true.  If anything, in the mind of the one taking their own life, it is a selfless act.  In Steve’s case, in his writings and in discussions he had with me, more than once he indicated that he felt he was a burden to those that loved him.  In his suffering mind, Steve felt we would be better off without him.

Based on my experience with Steve, I believe his mind was so tortured and he was in so much mental pain, he was not thinking rationally when he took his own life. That is not what I would call selfish.  Steve was the kindest, most giving and thoughtful man I have ever known and he would never do anything to intentionally hurt anyone.   As human beings, it is difficult for us to relate to mental pain and empathize with what someone so afflicted is feeling, hence one of the reasons suicide is so stigmatized and misunderstood.  We can easily understand physical pain since at some point or another in our lives we have experienced some form of it.

I suffered situational depression in the months after Steve died and believe it was in no way even close to what Steve must have felt suffering from clinical depression.  The despair and hopelessness I felt were so tortuous I can’t even imagine what Steve was going through in his final days.  A few weeks before he died, Steve told me he was so afraid.  He could not or would not share with me what he was afraid of.  Only now do I realize how much he must have been suffering.

I think it is easier for people to say suicide is a selfish act because it may be an effort on their part to make a loved one feel  better since they may think it takes the blame away from the suicide survivor(s) or perhaps it is easier  for them to say rather than really trying to process why someone would take their own life.  Sad to say, being a suicide survivor gives one much more perspective.  I hope to use this perspective to educate others.

Hearing these words today was a good thing as it has strengthened my resolve to continue to inspire conversation about mental illness and suicide with the hopes of dispelling myths like “suicide is selfish”.

Making Peace with Suicide

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March 15, 2015 was the darkest day of my life.  It was the day I lost my life partner, Steve Tarpinian, to suicide.  We had been soul mates for over 33  years.

Have I made peace with his suicide?

If I separate the cause of Steve’s death from the tragedy of forever losing the love of my life, I can say yes.

I have come to terms with the fact there is nothing that I could have done that would have resulted in a different outcome.  Steve’s mental anguish must have been so intense, so much so, that he lost sight of all the love surrounding him.  He had already tried suicide once before and failed, so it seems out of his hopelessness, he was determined to try again. That is how insidious the disease of the mind is.

The first two years after losing Steve were filled with  so many unanswered questions;  ; “Why, he had so much going for him”, “What if I had said…” , “What if I didn’t say….”, “What could I have done differently?” , so there was no possible way for me to make peace with his suicide.  At times these questions still haunt me, however, for the most part, I have accepted the fact that Steve made up his mind on his course of action and nothing anyone could have said or done was going to dissuade him.  The suicide and mental illness collateral damage such as destroyed relationships, being blamed for his death, uncalled for vitriol aimed at me and judgments on how I grieved are fading from my memory. Hence, I believe I have finally made peace with his suicide.

Losing the love of my life is what I still struggle with even though I realize that this is now my new normal  and that Steve and I will not grow old together and share the same pillow.  There is a huge hole in my heart that can never be filled.  Steve and I had a once in a lifetime relationship, filled with a deep respect and love for each other.  When we love deeply, we grieve deeply.  I  am  forever changed by Steve’s death.  Yes, I still have days with meltdowns and not wanting to get out of bed in the morning, but, I am only human.  My tears and sadness over the loss of Steve  is now a part of who I am.  As such, I have come to accept and embrace it.

My grief journey has taken me in directions that have helped me cope with my great loss. It is a daunting task and I must continuously remind myself to stay on track and not to fall back into the bottomless  pit of despair.     I realize  that trying to make peace with losing Steve, regardless of the cause of his death, will be a lifelong commitment that will not come easily for me.

How do I cope with my loss?

Living in the moment  and trying to pay it forward  have helped me the most in moving forward in a life without Steve.

Within 7 months of Steve’s passing, I wrote and published his memoir; Slipped Away, a single minded task that did not permit me to wallow in self pity.  Yes, it was draining, but, I was able to re-live many happy moments in my life with Steve.  I wanted Slipped Away to be more a celebration of Steve’s life and how he positively impacted so many people rather than a book about suicide.  The focus it took for me to complete the book  truly allowed  me to live in the moment.

Since publishing, I now do book talks, write blogs and use social media in an effort to inspire conversation about suicide and mental health issues.  These  topics, even to this day, are still stigmatized and most people are embarrassed to talk about these issues and would prefer to stick their heads in the sand.  As a suicide survivor, I have experienced this first hand.

In an attempt to try and have something  good come out of such a tragic loss, I wanted the telling of Steve’s story to allow him to continue helping people even though he is no longer with us.  The proceeds of  Slipped Away are donated to Project9line.org;  a  non-profit organization of veterans helping other veterans deal with depression and PTSD that provides outlets for them in the arts (writing, music, comedy etc.).    It was through Project9line that  I was introduced to AirborneTriTeam.org (ATT).  ATT’s mission is to promote teamwork and endurance sports to help veterans “… better their life style, change their attitude towards life and give them a purpose”.  There was a great synergy with myself and ATT since Steve was an Ironman triathlete many times over and the company Steve built was responsible for the foundation of the sport of triathlon on Long Island.  Supporting  the veterans of ATT in their mission gives me a sense of purpose.

Steve was not a veteran, however, even though the paths that lead our veterans to suicide are different than Steve’s, they shared the similar pain of hopelessness and mental anguish.   The end results of suicide are the same, the tragic, sudden loss of a precious life and the loved ones that are left behind, feeling the terrible heartbreak  of loss, with so many unanswered questions, wondering if they could have done something different to help their loved one.

Never in my life I would have thought I would be affected by the suicide of a loved one, let alone trying to make peace with suicide.  The time has come for me to accept my reality and as a suicide survivor, I can now say I have made peace with suicide.

www.SlippedAway.org

 

 

Unforgettable

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There are world impacting events that happen in our lives where we will always remember exactly what we were doing on that particular date and these moments are forever a part of us.  Two that come to mind for my generation are the assassination of JFK on 11/22/1963 and the World Trade Center terrorist attacks on 9/11/2001.

On a more personal level, an event occurred in my life on March 15, 2015, that will always be seared into my conscious and unconscious mind.  My beloved soul mate and best friend, Steve Tarpinian, lost his war against mental illness and took his own life. This is a day that I will never forget where I was and what I was doing when I got the news of his death.  It was a cold Sunday afternoon and a friend and I were sitting in a NYC coffee shop, waiting for a vegan festival to open at 4pm.  She got a text from Steve’s mom, telling her to go to my house to be with me since she needed to tell me something and she didn’t want me to be alone when I heard it.  Since we were together, I told my friend  to call her immediately.  As I watched the horror on my friend’s face while she was talking to Steve’s Mom and heard her sobs, my heart sank as I knew something had happened to Steve.

To quote Michelle Steinke (Facebook’s One Fit Widow) : “All other bad days before and after have been defined by that moment.”  The death of Steve has surely marked a transition point in my life, from over thirty three years of having a loving and fun filled relationship to a life of loneliness.  Even though Steve had periodic breakdowns over the course of our relationship, we had a wonderful, fun filled life together.  We traveled and saw beautiful places and shared a great love and caring for each other.  Everything was a great adventure for us, whether it was having breakfast together in the morning or hiking beautiful trails in Hawaii.

It is not always a tragic event that is seared into our memories, never to be forgotten.  In retrospect, the happiest moment in my life occurred on August 29, 1981.  I will never forget what I was doing.  This is the day I met Steve.  I clearly remember this day and will always cherish the memory.

It was a gray, overcast summer day and I was roller skating with three friends on the Jones Beach bike path.  On more than one occasion that day, a car would pass by and guys would hang out the windows and shout catcalls at us.  After a while it was getting to be annoying so I said to my friends;  “Next time we see a bunch of fit guys working out, I am going to start catcalling them.”

When we arrived at the beach, my friends and I decided to have a soda before skating home.  As we were sitting there, three extremely fit, attractive lifeguards ran past us. Almost as if I was on auto pilot, I skated after them and started whooping and hollering. Steve turned back to see what the commotion was and our eyes locked. In my excitement, I fell and Steve came back to help me up. I skated with the lifeguards as they ran for a little bit, then Steve asked if I wanted to come to a lifeguard party later that day.

From then on, we were forever soul mates.

http://www.SlippedAway.org

 

 

Fallen

fallen-blog

How many times have you had a chuckle over the bad acting in the “Help!  I’ve fallen down and I can’t get up” commercial?  I know I have had a few laughs many times while watching it.  Perhaps it was a protective reaction since none of us like to face what might be a real possibility if we live long enough.

Monday morning at 3:00a.m., that commercial was echoing in my head as I lay on the cold, hard tile floor of the bathroom and it became reality for me.  Never in my life had I felt so lonely, so full of hopelessness and despair.  I had gotten out of bed to use the bathroom and next thing I know, I lost my balance and my head hit the tile floor with a resounding thud. As I lay there, I broke out into a cold sweat, was nauseous and knew I was bleeding from the head but I couldn’t move.  Finally, after a while, I dragged  myself to get back into bed, trying to decide if I should call 911.

Since the bleeding stopped, my vision was okay and I was no longer dizzy, I chose not to call for help.  The next day, my cousin, one of the most knowledgeable  nurses I have ever known, came over and checked me out .   I have said before, I will always be lonely, but I will never be alone since I have such caring and loving people in my life.

I believe I am okay, however, I also believe this is a wake-up call for me regarding my health.  The time has come for me to accept that I cannot fight Parkinson’s any longer on my own without medications.  My hope is that the medications will alleviate some of my symptoms such as lack of motivation and depression so that I can focus more on exercise which I firmly believe is the best way to fight the progression and symptoms of this disease.

Trapped.

trapped

Themighty.com issued a writing challenge; create a metaphor to describe your condition or a symptom of it, so someone completely unfamiliar with it can get a glimpse into your world.

In 2015,I was diagnosed with  Parkinson’s Disease (PD), six months after the suicide of my soul mate of over 33 years.  Here is a small window to my world for those of you who know nothing about PD…

Fluidity, grace and balance, skills I developed as a result of training for years as a dancer and an athlete, are now replaced with rigidity, stiffness  and clumsiness.  My ability to write legibly, something I got my knuckles cracked for in parochial school if I did not do it properly, is gone.  I wonder why my computer is doing strange things until I look down at my hands on the keyboard and see a finger is consistently pressing a key and I had no clue.  I feel such a loss of control over what my body does now; it has a mind of its own that I have no jurisdiction over.  I am trapped in a body that is no longer the one I had lived in for over 63 years.

Bradykinesia, a defining feature of PD,  means “slow movement.”  Almost as if I am on the outside looking in, sometimes I feel as if I am  staring at myself in disbelief, trying my hardest to will my body to move faster, only to be ignored.  Sadly, instead, I see a windup toy that has slowly unwound to almost a complete halt.

My fine motor dexterity is impaired and seems to worsen on a weekly basis.  At times, it feels as though I have reverted to being like a child since I have to re-learn how to do the simplest of life’s undertakings, like putting money in a wallet or tying my shoe.  Putting papers into a knapsack can overwhelm me.

Depression and lack of motivation abound with PD.  I cry on a daily basis.  The sobbing can start just by watching a happy couple on a game show or hearing a sad song on the radio. For someone who would train at the level of a professional dancer or who had the drive to train with a heart rate monitor while pursuing endurance sports, I can barely cycle 6 miles on a bike at 10 MPH, turning my legs at no more than 65 RPMs.  I have lost strength, not just while lifting heavy things, but also for performing simple  everyday living tasks, like pushing a door open.  I struggle with maintaining confidence in myself as  I always feel weak and shaky.  Exhaustion is my daily natural state of being, even if I had a good night’s sleep.  My ability to remain vertical used to fade out at around 4pm, so much so, that I would have this urgent need to get horizontal.     Now, I fade out around noon and have to get to bed ASAP.

One may look at me and think I am in good  health.  however, things are not always as they seem.  I have tried to wear the brave face and be optimistic and positive, but, I am starting to strain to maintain this false sense of well being.  I am trapped in my own body.   Yes, I am learning to adapt and try to do things differently to overcome my new challenges, however, there may come a time when that is no longer possible on my own and this weighs heavy on my heart.   I try to live in the moment and not worry about the future, however, I am only human and sometimes I dwell on my not too distant future.

 

On a daily basis, I experience such a high level of frustration  and I am constantly mourning new losses of things I took for granted in the past.  As an example; last week,  I could not slip my left  foot into a shoe. At the early onset of my PD symptoms,  I was unable to keep a clog on my left foot while walking, now, my left foot just doesn’t move properly anymore.  Things like washing my hair with both hands or petting my rabbit with my left hand are no longer possible.

Six neurologists have diagnosed me with PD, so , I am coming to terms with accepting that I have this disease.  More than one doctor has told me people do not die OF Parkinson’s, rather, people  die WITH  Parkinson’s.  I am not convinced this is good news.  PD is incurable and it progresses in varying rates in different individuals.  I used to wake up every morning hoping my PD was misdiagnosed and that it was just a bad nightmare.  Now when I wake up, I hope I can still do the things today that I used to do yesterday.

So what is my plan?  I will continue to exercise, stretch, go for physical therapy and with what little motivation and energy I have , I will continue to search for relief from this disease.  Being on a plant based diet and natural dopamine supplements for over six months has not worked  for me.  This week, I will try acupuncture and Chinese herbal medicine.

As I understand it, PD medications only mask the disease symptoms and do NOT halt the disease progression,  Now, even though I was so against taking the PD meds in the past due to my initial bad reactions and side effects, I am now going  to also consider re-taking PD medications and/or antidepressants.  Even though the meds may eventually  lose their efficacy, I have to try to improve my quality of life.

 

http://www.SlippedAway.org