Vulnerable

This articled first appeared 5/140/2019 at:

Vulnerable, but Not Alone

vulnerable w outlines

“People who know me know I’m strong, but I’m vulnerable.” — Catherine Deneuve

According to google.com, one of the definitions of vulnerability is:

“The quality or state of being exposed to the possibility of being attacked or harmed, either physically or emotionally”

Recently, I felt a level of extreme vulnerability that I cannot ever remember experiencing. Potentially, this could be due to any of the following reasons:

– I now lack confidence and strength due to having Parkinson’s Disease (PD)

– Being old (although in my mind, I still think I am 21)

– I am a woman living alone

– A combination of all of the above.

Although, lately, I seem to blame everything on PD 😊.  It is a good scapegoat!

What happened?

At 7:15 in the morning, as I looked out my kitchen window, I saw an unmarked van backing into my driveway.  A man I did not know got out of the vehicle and rang my door bell.  When I didn’t answer, he tried to enter.  I froze as I stood in my hallway and stared at the front door, seeing the door knob moving.  My pet bunny started to thump and I knew I was not going to get any help from him.  I think he was more frightened than I was.

Luckily, since I live in a retirement community, there is round the clock security available.  I called security and within five minutes, someone arrived and challenged the person outside my front door.

All is well

It turns out that some construction workers went to the wrong address and rang my doorbell by mistake.

Although I felt so vulnerable in this situation, I am thankful I live in a community where I am not alone.

“I do have a vulnerable side. I think a lot of people have a misperception of me. They only see the tough, defensive, aggressive side. But every woman is vulnerable.” – Rihanna

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Fight Back

This articled first appeared 4/30/2019 at:

https://parkinsonsnewstoday.com/2019/04/30/losses-accelerating-fight-back/fight back

Don’t forget you’re human. It’s okay to have a meltdown, just don’t unpack and live there. Cry it out and then refocus on where you are headed.” – unknown

I tend to have more frequent meltdowns now.

Why?

My losses from this disease seem to be accelerating.  Some examples:

 

  • In boxing class, sometimes I struggle doing the punching choreography and can’t seem to coordinate my hands to do the punches required.
  • Losing my balance and falling backwards when reaching to put items on a high shelf.
  • My speed bag workouts are slowing down and I lose my rhythm more often.
  • I am clumsier and tend to knock things over more often.
  • Typing on a computer keyboard is an exercise in futility. Sometimes my finger holds pressure on a key too much and sometimes not enough.  I can’t tell anymore.

 

 

I suspect that only if you have Parkinson’s Disease (PD), can you relate to what I am saying.  These things may seem inconsequential, however, when they happen with more frequency, that in itself is frightening and overwhelming.

 

More than ever, I must be mindful of what I do now.  Falling and injuring myself a few weeks ago has really shocked me into the reality of having this disease and how serious it is.  More often than not, I find myself cursing at PD and yelling expletives at the top of my lungs in my house when my body fails me.   My pet bunny doesn’t know what to make of this and I think the poor guy thinks I am yelling at him.

When my body does not move the way my mind is telling it to, the frustration levels accelerate.  In my mind, this may also could be a harbinger of things to come.

Running on empty

Some research indicates that over 50% (even as much as 60-70%) of dopamine producing neurons are dead by time PD symptoms first appear.   There is no question in my mind that PD is aging me before my time.  A ninety-year old friend is just starting to experience symptoms that are due to natural aging that I see now at age 66 due to PD.
As my neurologist suggested, sometimes I need to take a step back, re-focus and not be too hard on myself.  He knows me well.

I must Fight Back and not give in!

 

At any given moment, you have the power to say this is not how my story is going to end.” – unknown

 

Fallen…again

PDN---fallen

This article first appeared on 4/23/2019 at:

After a Nasty Fall, I Think of Those Who Came to My Aid

We must accept finite disappointment, but never lose infinite hope.” – Martin Luther King Jr.

Fallen, again

Not even two weeks after I put the finishing touches on my walking with mindfulness article,  I took a very nasty fall. My first and prior fall occurred in July of 2017. Since my left foot tends to drag sometimes, I find I must focus on how I am walking so I don’t trip.  As I was heading back to my car, my mind was going a mile a minute, thinking about what I needed to still do that day.   I was not staying in the present moment.

Lost in thought, I was not mindful of my walking and tripped and did a face plant on the sidewalk.  As I lay on the ground wondering what just happened, I remember hearing voices asking if I was okay.   As I sat up, blood was pouring from my face and I found myself surrounded by concern and compassion.

What do I remember?

Most of what happened in the moments surrounding the time I fell is still a blur.  What I do remember is a few people crowding around me.  There was a police officer, a local postal employee who was also an EMT, a man who gave me his handkerchief to stem the blood flow and someone who ran to the drugstore to get bandages and peroxide. I am still overwhelmed with gratitude for the support from these strangers.  I will say it once again, Kindness Matters. It was such a time of great vulnerability for me and through the caring and concern of these strangers, I did not feel so alone.

“Remember there’s no such thing as a small act of kindness. Every act creates a ripple with no logical end.” — Scott Adams

Emotional and physical pain

As I drove myself to the emergency room, I broke down in tears. This was partly because of the pain, but more so due to the fact that I believe my Parkinson’s Disease (PD) may be progressing. Luckily, I only had some minor swelling, a few cuts and bruises and a chipped tooth. However, my emotional healing is taking longer than my physical recovery from this fall.

Lessons learned

  1. Practice what I preached in my prior article.
  2. Remember the kindness of strangers that day which has helped me physically heal.
  3. I am not alone.
  4. I need to accept the fact that my mind moves a lot faster than my body and I no longer can “multi task” and must pay attention to the task at hand.

 

If you can’t fly then run, if you can’t run then walk, if you can’t walk then crawl, but whatever you do you have to keep moving forward.” – Martin Luther King Jr.

 

Heel, toe

 

heel-toe

This article first appeared on 4/16/2019 at:

Heel, Toe: Walking with Mindfulness

 

Mindfulness isn’t difficult, we just need to remember to do it.” – Sharon Salzberg

The ability to walk is something many of us, myself included, have always taken for granted. Now, having Parkinson’s Disease (PD), something that use to come as a matter of course to me is starting to deteriorate.   PD has adversely affected my left side more than my right side. Now, I find myself tripping more, since I tend to drag my left foot.

Walking now requires my conscious thought

Going for a walk is now more a mindful task than an exercise for me. I find it much more therapeutic to focus on how I walk and be in the present moment vs. thinking about the future and how my PD may progress. With each step I take, I concentrate on repeating to myself; “heel, toe”.

My stride analysis

When there was snow on the ground, I decided to check my walking steps when I did not focus on saying “heel, toe” vs. when I did.  My footprints in the snow were very telling, so I took a photograph. On the left side of the photo are my steps where I was not thinking about my stepping patterns. You may notice both feet show a bit of a drag in the snow.  On the right side of the photo, as I moved forward, I really focused on flexing both of my feet and heel striking first.  There are no signs of drag on either foot.

Am I putting too much thought into this?

Years of training to improve as a dancer and a cyclist have made analysis of my body movements come quite naturally to me.  Whether it was improving my pedal stroke for more cycling power or perfecting my balance to do pirouette turns, I learned to be mindful and to be in touch with how my body was performing.  Now, I must use that skill to help me be more attentive when I walk.

My neurologist says I tend to overthink things.  I believe our greatest strengths can also be our greatest weaknesses. Sometimes I do overthink, to the point of getting paralysis by analysis.  However,  I believe mindful analysis of my PD symptoms (including my walking technique) is critical in helping me create different ways of doing things that at one time (before PD) used to come as second nature to me.

Do not dwell in the past, do not dream of the future, concentrate the mind on the present moment.” – Buddha

 

For Parkinson’s Patients, the Sense of Loss Is Relentless

lost-not-foundI fight for my health every day in ways that most people don’t understand. I’m not lazy. I’m a warrior!” – unknown

Parkinson’s Disease (PD) is a disease of loss. It chips away one’s ability to perform seemingly mindless tasks.

This article first appeared on 3/26/2019 at:

https://parkinsonsnewstoday.com/2019/03/26/parkinsons-patients-sense-loss-is-relentless/

Examples of what I have lost to Parkinson’s Disease

The list of things I can no longer do, or no longer do without a lot of effort may seem inconsequential:

  • Putting a letter or a card in an envelope
  • Keeping a slipper or clog on my left foot
  • Opening a sealed envelope
  • Picking up a thread on the floor
  • Turning the pages of a book.
  • Tying my shoes
  • Rolling over in bed or on the floor
  • Opening up packages
  • Shaving underarms
  • Rolling a yoga mat
  • Folding laundry
  • Washing the hair on the left side of my head
  • Holding a handbag close to the left side of my body
  • Finding the edge of the toilet paper on the roll
  • Slipping on a sports bra
  • Trying to put on pants while standing on one leg
  • Putting on pierced earrings
  • Write legibly
  • Being able to walk without fear of my left foot dragging and tripping me

If opening your eyes, or getting out of bed, or holding a spoon, or combing your hair is the daunting Mount Everest you climb today, that is okay.” – Carmen Ambrosio

What is the most troubling loss for me?

A more disturbing concern is that I can’t be trusted to hold on to something firmly with my left hand, whether that is holding a cup of coffee or giving my rabbit his medication.

As an example, while giving medicine to my bunny; I was holding the bottle in my left hand, and used an eyedropper with my right hand to administer the medication.   Next thing I know, I look down and see pink medicine all over my rabbit’s fur.  I was not even aware my left hand was tipping the bottle.  So, not only did I waste the medicine, I had to clean the rabbit.

I once spilled hot paraffin wax all over the kitchen floor, counter and cabinets because I could not hold on to the paraffin container while trying to empty it.   It took me almost two hours to clean up the mess.

The loss of my left-handed grip is a problem in itself, however, the extra work/cleanup I have to do when it fails me is even more troublesome.

PD is progressive

Just when I think I can deal with what I have lost, something else that I used to perform with ease now eludes me.  It almost feels like a death by a thousand paper cuts.

While the loss of the ability to perform each activity in itself is no big deal, it is the daily, collective and continuing loss of other activities that serve as a constant reminder that I have an incurable and progressive disease. Day after day, this wears me down and it seems the list of lost functionalities grows on a monthly basis.

Sometimes you will be in control of your illness and other times you’ll sink into despair, and that’s OK! Freak out, forgive yourself, and try again tomorrow.” – Kelly Hemingway

What’s the big deal?

While it may be easy to find a work around now, PD is relentless and some day it may come to the point where I don’t have an alternative way to accomplish a task.  This is when independence is lost and being faced with new failings every day, no matter how insignificant is daunting and can fuel a sense of despair and hopelessness.

How can I best combat PD?

Keeping my sense of humor about some of the ridiculous things PD does to my body will be my salvation. Laughter will be one of the most effective weapons in my arsenal while I battle this insidious disease.

You either get bitter or you get better. It’s that simple. You either take what has been dealt to you and allow it to make you a better person, or you allow it to tear you down. The choice does not belong to fate, it belongs to you.” – Josh Shipp

 

 

 

When You’re Living with Parkinson’s Disease, Kindness Matters

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This blog first appeared on 3/12/2019 at: https://parkinsonsnewstoday.com/2019/03/12/when-living-parkinsons-kindness-matters/

“You will never know what someone is dealing with behind closed doors. No matter how happy someone looks, how loud their laugh is, how big their smile is, there can still be a level of hurt that is indescribable. So be kind. Even when others are not, choose to be kind.” —Author unknown, via 3am Thoughts Facebook page

What was my mindset?

The weather was typical of a New York winter’s day: cold, damp, and dreary. My spirits were equally dark and depressing. Parkinson’s disease (PD) has a way of aging people before their time. As I walked into the grocery store, I was ruminating on how much my bones ached and how fatigued I felt.

What happened?

When I went to purchase my items, I asked for my 10 percent senior discount — there are some benefits to getting old. The young woman behind the counter looked me in the eye and said in a sincere tone that she thought I was much younger than 65. I could tell she meant to pay me a compliment and was not going to ask me to prove my age with my driver’s license. I was so touched by her kind words that I broke down in tears.

What changed?

This woman’s random act of kindness blew me away. My mood transformed from melancholy to elated in seconds. She didn’t know that I was in the midst of a major pity party thinking about how old I felt. She was surprised by my tears and didn’t realize how welcome her words were to me when I was feeling miserable.

Why am I telling you this?

The point of my sharing this brief, transformative moment of my PD journey is that kindness does matter. The simplest actions can make a huge difference to someone who may be going through a difficult time. It has been weeks since this act of kindness. However, I still smile at the thought of that simple gesture from a stranger. This was an unsolicited, kind act from someone who didn’t know how unhappy I was or how much I needed some positive feedback.

Kindness matters.

No act of kindness, no matter how small, is ever wasted.” –Aesop

The day Parkinson’s Disease left the room

rsb hands

This blog first appeared on 2/26/2019 at:

https://parkinsonsnewstoday.com/2019/02/26/rock-steady-boxing-parkinsons-disease-left-room/

“The power for creating a better future is contained in the present moment: You create a good future by creating a good present.” – Eckhart Tolle

Rock Steady Boxing (RSB) is not just about boxing, sweating, moving and exercise.  More than once, the classes have allowed me to re-capture a part of my former self prior to the onset of my Parkinson’s Disease (PD).  In the past, this has always been very personal and unique to me.  In a recent class, I observed the other class participants experiencing something similar in their own way.  It was a sight to behold and it truly was an empowering feeling of joy shared by all.

Living in the moment

“If you aren’t in the moment, you are either looking forward to uncertainty, or back to pain and regret.” – Jim Carrey

The class was united for a few moments where I truly believed none of us thought about PD.  During our warm-up, the song “Like a Rolling Stone” (lyrics by Bob Dylan) started playing.  Spontaneously, we all started singing the lyrics. There were smiles all around and one of the boxers took out his harmonica and played along. The feeling was palpable.  For those moments in time, none of the participants had PD.  We were fellow athletes having fun, singing along to the music (yes, even me who cannot hold a tune) and living in the moment.  The feelings I experienced in that class still resonated with me days later.

Click here for a video clip of the magic moments. Thank you, Sensei Michelle and assistant coaches Rita and Michael for giving the boxers a respite from our troubles that day.

The power of music and the camaraderie fostered by RSB can never be underestimated. What happened in class that day could not be scripted. We were all caught up in the moment oblivious to any burdens we walked into the room with that day.

Who are we?

RSB is a community of people (coaches, patients, volunteers), sharing collective experiences. We are all united in fighting back against an incurable and progressive disease. It is the moments like I experienced in this particular class that keep me coming back.  This is what makes RSB such a healing and unique experience.

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