Better than yesterday…

2011 jm chs finish

“Better than yesterday, but not as good as tomorrow”

I try to respond with this statement when someone asks me how I’m I am doing.  Some days it is easier than others to respond with that. Lately, I am finding it much more difficult to say. For me, there is no respite from Parkinson’s Disease (PD) symptoms in my waking hours. They manifest themselves in everything I do from the moment I open my eyes in the morning until I go to sleep at night.  Getting into or out of the bed is a struggle and dressing myself is a huge challenge.  Making my breakfast, I knock things over on the counter with my clumsiness.  It takes immense focus on my part to put on a sock or a glove.  I am reminded of the loss of my strength every time I open a jar or rip open a package.  Whenever I put money in my wallet, I can see how much my fine motor skills have deteriorated.    First it was my left side that was failing me, now my right side is worsening as well.  Writing a check, typing on the computer, opening the mail, petting my bunny’s head, washing my hair and folding clothes or sheets, all mundane tasks I have always taken for granted are now monumental efforts for me.  I keep telling myself, if my symptoms don’t get any worse than this, I can deal with it and make adjustments, but the disease seems to progress a little more each day. It is like death by a thousand paper cuts.

Since I don’t have visible tremors, most people think I am fine.  No one can see my ever present  “internal tremors” which make me feel so weak and shaky on the inside.  As I reflect on what Steve went through with mental illness and my PD diagnosis, I see so many similarities in the treatment of the two diseases. The irony does not escape me.   It has given me an entirely new perspective on the hopelessness and despair Steve must have experienced.

Many medications exist to treat the symptoms of mental illness and PD (I am not aware of any drugs that can stop the progression of either disease).  It could take weeks, if not months, to know if a medication has any positive effect in alleviating symptoms. In many cases, prescription side effects seem to be the same as what the drug is supposed to help.  New drugs that are being approved for the respective diseases seem to be additions to existing medications to either combat side effects of another prescribed drug or for improving the efficacy of the first drug.  To further add to the frustration, one may have to be weaned off a medication if it is not working.  In addition, over time, efficacy of a successful drug may start to fade.

Witnessing the deterioration of our capabilities, in my case physically, in Steve’s case mentally, is frightening beyond belief. About a week to ten days before he passed, Steve said to me, “I am so afraid.” When I asked what he meant, he could not—or did not want to—explain what he feared.   Most people have no clue as to what we are/were dealing with and how exhausting it is to put on the mask that everything is okay when it is not.  As it was with Steve, so it is with me…things not always as they seem.

In Steve’s case, I believe his mind was in constant turmoil which was always a reminder to him of his mental struggles and I suspect since his illness appeared to be progressive and seemingly incurable, it compounded his anguish.  In my case, my mind is trapped in a failing body that no longer listens to me which is a constant reminder of the incurability and progressiveness of PD.

Steve and I left/leave no stone un-turned (traditional Western medicine or alternative, holistic therapies) in our quest for relief from our respective afflictions.  For me, nothing seems to help (yoga, boxing, weight lifting, walking, supplements, diet, prescription meds, acupuncture, meditation and physical therapy).  For Steve, it was swimming, biking, running, hiking, supplements, diet, prescription meds, yoga, weight lifting and psychotherapy), all to no avail.

Every day, no matter how much I write in my gratitude journal and offer thanks for all I do have, when I wake up to my reality, the despair will still set in.  But, much like Steve had done, I will put on my happy face and hope that today will truly be better than yesterday, but not as good as tomorrow.

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Rock Steady – Shoveling snow

 

shovelling-snow

What does not kill you makes you stronger.”

– Friedrich Nietzsche

One of our drills in Rock Steady Boxing this week was ‘shoveling snow’.  Using a spoon with our non dominant hand, we were challenged to fill a bowl with as many cotton balls as we could in thirty seconds.  That is my left hand which is pretty much useless now for doing anything at this point.  Needless to say, it was a HUGE struggle for me to even get nine cotton balls in the bowl.  My eyes started to well up with tears as I was doing the exercise.  I was feeling so weak and helpless, trying to unsuccessfully will my body to quickly perform such a simple task.  The thirty seconds seemed like an eternity, but I was finally able to finish without a total meltdown mainly due to the support and kind encouragement from the other participants.  Seeing the beaming smiles on some of my fellow boxers who filled the bowl quickly bolstered my spirits. It is ironic how failing at one small mindless task can bring a person to tears, yet, if performed well it can be so satisfying and such a joy.  

While it may seem inconsequential, this is just one small example of the simple movements I  have always taken for granted that Parkinson’s Disease (PD) has robbed from me. I suspect that most of my fellow boxers in class that day truly empathized with me.  Although their PD challenges may be different and unique to them, I believe they too have their moments of helplessness and despair when they are reminded of what they have lost to this disease.  PD affects everyone so differently and while one class member may perform a drill well, another may struggle tremendously with it.  There seems to be no rhyme or reason as to what any one person loses as a result of this disease.

When my PD symptoms start acting up (something that happens more often than not these days) well-intentioned people will tell me I look fine and I know I am NOT fine.  Or perhaps when I share my frustration with a PD symptom like clumsiness or inability to type or write, in an effort to try to make me feel better, people may say things like “it always happens to me” or “I have the same problem”.  They have no idea of the internal struggles that I am dealing with, something I can hide very well.  Just as it was with Steve and his ability to hide his mental anguish and so it is with me being able to hide my PD related physical shortcomings.   Things are not always as they seem.   

It is helpful for me when someone acknowledges my expressed challenges are PD related  rather than dismissing them as  common afflictions due to aging or that my symptoms aren’t visible.  If I say I am so slow or I can’t  tie my shoes you may  think otherwise, however, there is probably a huge battle going on in my brain. I am trapped in a body that doesn’t listen to me anymore.

Some may think that I am doing well because I am still writing blogs and updating my Facebook page.  What they don’t know is that just typing this blog is a gargantuan effort and it takes me hours to finish. Most of that time is spent dealing with my poor typing skills, even with using spell check. I do my best to be thankful for what I can still do and not dwell on what I have lost, however with how my PD is progressing, losses seem to occur on a daily basis now.     

We may encounter many defeats, but we must not be defeated” – Maya Angelou

 

Finding my way back to dance

 

“Nobody cares if you can’t dance well. Just get up and dance. Great dancers are great because of their passion.”
― Martha Graham

Last week, I taught a jazz dance class at my community.  I was very apprehensive since I have lost so much ability due to Parkinson’s Disease (PD).  Where I was once fluid and graceful, I now feel inflexible, rigid and non-rhythmic.

For over thirty years of my adult life, I have been dancing (jazz, ballet, tap).  Although I had a 9-5 corporate job, there was a period of about ten years where I would take up to fifteen hours of classes every week and I also performed in a local Long Island dance company for several years.  Dance has always been an important part of my life.

The last time I took a dance class was shortly after I was diagnosed with PD in 2015.  It was Dance for PD® at Lincoln Center in NYC.  I left the class in tears, since it re-enforced for me what I have lost and I also saw my potential future in the other participants.  The last time I taught a dance class was probably over twenty  years ago at my gym, and before that, I was a GO (employee) at the Martinique Club Med in the late 1970’s, teaching jazz dance classes there for a few months.

Needless to say, I was a little rusty and also very nervous about teaching this class in my new environment.  My confidence in my dance skills is virtually non-existent. Something that had once come so naturally to me has now been eroded by PD,  I kept thinking  to myself; “Will anyone show up?”; “Will they notice my technique failings as a dancer?”; ” Will the participants be bored?”;  “Will they like my music choices?” and on and on.

Of course, all of my fears were unfounded.  About 13-15 people showed up; two were men, many of the participants were in their 70s-80s and at least three were over 90.   Some showed up with their walkers and some took the class seated.  They were all so supportive and just happy to be there and practicing movement.   Every single one of them inspired me.   They were non-judgmental and eager to learn.  Dancing gave them freedom of expression, the ability to exercise, all while having fun and we were all able to laugh at ourselves.

The class ended with smiles all around and the students ended up teaching me far more than I taught them.

“The moment in between what you once were, and who you are now becoming, is where the dance of life really takes place.” —Barbara de Angelis

 

Rock Steady, float like a butterfly

 blog---butterfly

“Float like a butterfly, sting like a bee” — Muhammad Ali

Rock Steady boxing classes are not getting any easier for me and that is to be expected.  Sensei Michelle instinctively knows how to motivate and push us and when to back off.  Depending on how Parkinson’s Disease (PD) may be affecting me that day,  some classes are harder than others.  I have read that people with PD have to work twice as hard during physical activity than those without PD due to our lack of dopamine.  I can certainly attest to that theory!

Yesterday, one of our drills was “shadow sparring”, which is when you are throwing punches at a partner, but not making contact.  I was struggling to keep my energy up for this.  When “Eye of the Tiger” from the movie, Rocky started playing, it brought me back over thirty years to my dancing days.  That song was the music for  one of the first choreographed routines I ever performed on stage.  I could not focus on being in the moment and my sparring was getting slower and slower as I was having a mini pity party for myself.  I really had  to dig deep to focus on my boxing and not on what I once was capable of doing.

A little later in the class, another drill consisted of punching and ducking punches.  For the briefest moment, another door to my past life of dancing opened; only this time, I could feel I was gracefully  performing  the drill.  I had strength, power, rhythm and speed for maybe  30 seconds.  I know it was real as my fellow class members could see it and they cheered me on.   It was such an incredible high, but so fleeting.  As quickly as that joyous moment came, it was gone and I was back to my normal, slow, non-rhythmic self.

After being so blissfully high during my “butterfly” moment, I came crashing down at the supermarket later in day.  While I was scooping flour into a plastic bag, my left hand stopped working and I dropped the open bag on the floor and spewed flour all over myself and the surrounding areas.  What a mess I made!

This is a typical roller coaster ride of a day in the life of a person afflicted with PD.  The unpredictability of this disease is so challenging.  A day can have hopeful moments (few and far between for me) where one can feel like their pre-PD selves, but then,  we are reminded of  our reality and what we have lost to this disease and our hopes are cruelly dashed.  These ups and downs in themselves are exhausting..

My Rock Steady journey will continue, if only to feel the joy of opening that door once again, even if only a crack, to the rhythm and athleticism I once enjoyed.

 

“The fight is won or lost far away from witnesses – behind the lines, in the gym, and out there on the road, long before I dance under those lights.”  Muhammad Ali

 

http://www.SlippedAway.org

Rock Steady – Dig deep

 

After two months of Rock  Steady classes, two times per week, I cannot say I notice an improvement in my Parkinson’s Disease (PD) symptoms.   I feel  I am progressing  rapidly with my fine motor skills worsening, fatigue increasing and I am slow moving in most elements of daily living.  However, my symptoms could be worse, but Rock Steady may be helping me slow the progression somewhat.   That is the unpredictability of this disease.

On the plus side, there is so much to love about Rock Steady.  I am doing an activity with people  just like me who struggle with the same challenges of this disease.  We all help and support each other; the camaraderie is off the charts and our coach is so encouraging and compassionate.  After one class, a participant couldn’t  unwrap the tape that goes on our hands under our gloves and I was so happy to be able to help him.  A few minutes later, I couldn’t put my coat on; he was right behind me and offered a helping hand which I graciously accepted.

What is so daunting for me while taking this class is how I am having so much difficulty trying to ‘dig deep’;  something I was always able to call on as a cyclist and a dancer.   Is it because of the PD induced symptoms of apathy and lack of motivation or do I have no more dopamine left that day to fuel me or am I just out of shape?  Once again, another facet of the unpredictability of this disease that makes it so difficult to find relief from the symptoms.

‘Digging deep’ never came easy to me, but I would always persevere.  As a dancer, I could always push through doing the choreography one more time in an exhausting rehearsal even though we had been dancing for several hours after I had put in a full day at my 9-5 job.  As a cyclist, I remember one ride in the mountains of Mallorca, Spain,  where I was separated from the group in a hurricane-like storm.  I had to make it back 10 miles to the hotel alone on my bike, going downhill on the steep mountain switchbacks in a pelting downpour with gale force winds. I was able to ‘dig deep’ and make it back in one piece without crashing.   Once again, I was able to find that ability to ‘dig deep’.

Now, in Rock Steady, I am once again trying to ‘dig deep’ because I truly believe it will help alleviate my PD symptoms in the long run.  My ‘digging deep’ in the past seems like a piece of cake compared to what I am dealing with now.

As Steve would always say about his German client focused cycle training camps in Mallorca; “Dies ist kein Kindergeburtstag” (This is no children’s birthday party).

And so it is with Rock Steady boxing…

Suicide Stigma; alive and well

Some  recent experiences have sharpened my suicide awareness focus since Steve, my soul mate and best friend for over 33 years, died by suicide in 2015.  In the two years since Steve passed, I see that the suicide stigma is still alive and well.

Recently, unaware of Steve’s death, an acquaintance asked me about my husband.  When I told her how he died, her startled look and response blew me away.  She said: “Who told him to do that?”.  Clearly this was said out of ignorance and discomfort.  I was not angry, but rather sad, both for her and Steve and myself, in that she was shocked and did not know what to say.  I believe this is mainly because of the stigma of suicide, an uncomfortable topic no one wants to talk about it.

The second experience was with a woman who lost her son to suicide.  I asked her if she wanted a picture of him to  be included in a memorial photo collage that was being shown at an International Survivors of Suicide Loss Day event (sponsored by the American Foundation for Suicide Prevention (AFSP)) on November 17, 2018.  I believe she struggled with how to respond and after giving it some careful thought, she declined and in so many words indicated her decision was based on how the rest of his family might feel about her openness in publicly acknowledging the cause of her son’s death.    I respect her decision as we all need to come to terms with the suicide of a loved one in our own time.   But, it should not have to be such a painful and divisive struggle for the suicide loss survivors.  If this was a memorial to those who died of cancer or heart disease, would the same stigma exist?  Would her response be the same?  I think not.

In the early days after Steve passed, I was guilty of feeling shame talking about Steve’s suicide. After he died, I told a local reporter  he could NOT put the cause of Steve’s death in his story. Not too long after, I realized I was perpetuating the suicide stigma with my silence; only natural since I, along with many in today’s society felt it was a taboo topic, too embarrassing to talk about publicly.

However, some progress is being made to help lessen the suicide stigma. Earlier this year, Logic, a popular young singer, released a powerful suicide prevention anthem.  The title of the song is the toll free suicide prevention hot line: ‘1-800-273-8255′ and the lyrics are written from the perspective of one who has called the hotline because they wanted to end their own life. The hotline has received record call volumes since the song’s release.

The fact that the well-known and beloved actor and comedian Robin Williams took his own life was not suppressed by his family or in the media.  The suicides of two recording artists, only two months apart earlier this year, Chris Cornell, lead singer of Soundgarten and Audioslave and Chester Bennington of Linkin Park were not concealed .  The more dialogue there is about suicide, perhaps the survivors of suicide loss will not be burdened with trying to conceal the cause of the death of their loved one.

According to AFSP, suicide is the 10th leading cause of death and over 44,000 people die by suicide each year in the United States.   Many suicide attempts, however, go unreported or untreated. Surveys suggest that at least one million people in the U.S. each year engage in intentionally inflicted self-harm.  These numbers are alarming  and the fact that most people do not want to talk freely about this cause of death is even more alarming.

Maybe someday, in the not too distant future, people will be able to talk openly about suicide.  Until then, I will continue to be very vocal about Steve’s story.  I believe if we can eliminate the stigma, those who struggle with thoughts of  taking their own life, will not feel  embarrassed  to  reach out for help.  Also, for the loved ones of  those that continue to be lost to suicide, perhaps the permanent sadness in the eyes of  the suicide loss survivors will lessen slightly when they no longer have to carry the suicide stigma burden which only deepens that sadness.

 

We are all connected – Veteran’s Day 2018

Because of my associations with Airborne Tri Team (ATT) and Project9line (both non-profit veterans’ organizations of veterans helping other veterans),  people have asked, if not wondered, whether Steve and I were veterans.  Although we both have veterans from several wars in our families, neither of us have ever served.  I chose Project9line as the proceeds beneficiary of Slipped Away  because of their unique approach to assist returning veterans who may be suffering from PTSD and depression by providing outlets in the arts for them.

Patrick Donohue, the founder of Projectline introduced me to  Ron Hurtado, the founder of ATT (their  mission is to  promote teamwork and endurance sports to help veterans).   Since Steve was an 18 time Ironman triathlete who helped lay the foundation for triathlon in Long Island and was so well known in the triathlon community , Patrick thought there would be a good synergy between ATT and myself.

When ATT members compete in a triathlon, after all the participating members have completed their race, they will gather at the finish line to do 22 pushups to honor their brothers and sisters lost to suicide with the hopes of raising awareness of the alarming numbers of veterans who take their own lives on a daily basis.  Then they will add an extra push up in memory of Steve Tarpinian and all the other civilians lost to suicide.

Steve and the veterans that take their own lives, although their paths to suicide may be very different, I believe they do have some important things in common.  They were in unspeakable pain, suffered tremendous mental anguish and feared living more than they feared dying.  There is the loss of a precious life and the loved ones left behind with so many unanswered questions, wondering if they could have done something different.

So, although Steve and I were not veterans, my intent is to  continue to raise awareness about suicide so that there can be open  conversations about it.  How can anything change unless we talk about it freely?  In addition, by  supporting the missions of Project9line and ATT in whatever way I can, hopefully, together, we can help  save one veteran at a time.

I am humbled that the veterans of ATT have honored Steve’s memory.  We are all connected.