Parkinson’s and the Next Generation ~ the advocates of tomorrow!

By ~ Meg Bernard

In February 2015, four and a bit years after being diagnosed with Parkinson’s disease and just a few short months after having received my J-tube; necessary due to stomach paralysis caused by my PD; my 15 year nieces posted on Facebook a poem which she has written. My dear niece  wanted myself and the rest of her FB world to see what her 37 year old aunt, who has Parkinson’s disease and a feeding tube, looks like through her young eyes. I read it again, a few days ago and it caused me to pause; contemplate; wonder and imagine what the future will look like.

With April being Parkinson’s Awareness Month, it creates a perfect moment to reflect of the past and then to dream about the future…a future in which a cure for PD has been found; all those once afflicted are now healthy; all those would have become afflicted are now safe; Parkinson’s disease has been eradicated from planet earth, never again to rear it’s ugly head at young, old and innocent victims!!! I don’t know about you but I’m lovin’ that dreamed for future; it’s only flaw being that, as fun as it would be to claim such, I am not a fortune teller (thank you for gasping in disbelief, if made up for the harsh reality of the truth). This means that as fun as it is to dream about the future, it is more realistic to follow the time honored motto “Be Prepared”; I don’t mean just asking ourselves “are we prepared for our future?” I would like to take it a step further and ask “what are we doing to prepare the future generation to live in a world that contains people with Parkinson’s disease?”

I’m going to purpose an idea. A thought, with a ‘small girl’ twist…Just go with me on this one…

THOUGHT #1: We need to raise awareness. Do I hear a collective “Duh?” from the peanut gallery? I shall ignore the taunting and give my answer in the form of a question “WHO are the people that we need to make aware?”

THOUGHT #2: We need to educate. I’m going to cut you off before you comment and immediately answer in the form of a question “WHO should we be educating?”

THOUGHT #3: We need to help create advocates…shhhhh! I’m not finished writing…“TO WHOM should we be teaching these skills of advocacy?”

THOUGHT #4: Is it mandatory to have Parkinson’s disease or be over the age of 21 in order to be made aware of PD; being educated about PD; or being taught the skills of advocating on behalf of those with PD?…(finally…a hush falls over the crowd)

As you mull that one over, I invite you to see PD through the eyes of a 15 year old who is brave enough to make aware and educated her friends and aquaintences.

AFTER READINF THIS INDARE YOU TO TELL ME THAT SHE ISN’T RAISING AWARENESS, EDUCATING AND LEARNING THE SKILLS OF ADVOCACY. 

My aunt has early onset Parkinson’s disease. It affects the way you move. It happens when there is a problem with certain nerve cells in the brain. Normally, these nerve cells make an important chemical called dopamine. Dopamine sends signals to the part of your brain that controls movement. So she has trouble doing some everyday things. But somehow she makes it work. I have been watching how she lives her life and I’ve realized how hard her life has become. Recently she discovered her stomach can’t digest food or anything anymore. so basically her stomach doesn’t work and she cant eat anymore. So she had to get a feeding tube put into her intestines so she can get the food and water she needs to live. It’s very hard for her and her family to go through all of this. Its hard for her extended family like me to watch this happen and realize we can’t do anything about it. I love my aunt so much and I wish there was a way to fix all of what is happening to her. But she is being so strong and she is dealing with all of this and it is amazing. She is one of my biggest heroes. I don’t know if I would be able to deal with it like she does. She is an amazing person and I feel awful this had to happen. So I wrote this poem for her to tell her how much I love her and that she is one of my heroes. She is a fabulous, strong person that I am so happy I know. so here’s the poem….

I Wonder

I wonder what it’s like,
Chasing hope each day.

I wonder what it’s like,
Facing the pain;
Of a brand new day.

I wonder what it’s like,
Trying to live a normal life,
When people around you are trying to bring you down.

I wonder what it’s like,
Having kids who need;
Extra care,
But not always being able;
To give it.

I wonder what it’s like,
Trying to do the things you love,
And sometimes failing.

I wonder what it’s like,
Trying to go through the day,
But not being able to do the simple things.

I wonder what it’s like,
Having the excruciating pain,
And not being able to do ANYTHING.

I wonder what it’s like,
Trying to love others,
When it’s so very hard;
To love yourself.

I wonder what it’s like,
When people;
Just don’t understand what you need,
What you are,
And how this came to be.

I wonder what it’s like,
Having such a hard life,
But then still doing things;
To help others;
With the same problem,
Get the help they need.

I wonder what it’s like,
Trying to enjoy;
The life you have,
And being grateful for it.

I wonder what it’s like,
To feel;
Like you just can’t;
Do it anymore.

I wonder what it’s like,
Trying to be;
What you used to be,
But you can’t.

I wonder what it’s like,
Fighting the dragon;
Every single hour.

I wonder what it’s like,
Trying to be that;
Super girl you want to be.

I wonder what it’s like,
To be happy,
When it seems like;
There is nothing to be happy for.

I wonder what it’s like,
To smile through;
The anguish;
And tears;
Of what is going on.

I wonder what it’s like,
To look so strong,
When you feel so weak.

I wonder what it’s like,
Trying to help your son;
Reach the moon,
When the world,
Seems so far away.

I wonder what it’s like,
Trying to help your girls;
Reach their goals,
When yours seem;
Impossible.

But then,

I wonder what it’s like,
Knowing you achieved;
What you wanted that day.

I wonder what it’s like,
Reaching for the stars,
And touching them,

I wonder what it’s like,
Knowing God knows;
You can handle it
Then you do.

I wonder what it’s like,
Wanting to do;
Whatever you want,
And then doing it for real.

I wonder what it’s like,
Defeating the dragon,
For at least that day.

I wonder what it’s like,
Having the faith;
To say,
“I’ll be alright.”

I wonder what it’s like,
Accepting you fell,
But then getting up,
Over and over again.

I wonder what it’s like,
Catching that hope.

I wonder,
I try to imagine,
But I can’t.

All I wonder is;
What it’s like to be,
The hero I see.

~ By Anna (the small girls niece)

THIS is my dream for the future, dear friends; a place where those who are different are not simply tolerated;  we are respected and understood.

I ask you to actively seek out opportunities to share your knowledge with the next generation; oithe advocates of tomorrow!!

Have Courage and Be Kind

Much love ~ Meg, small girl with parkinson’s

#smallgirlwithparkinsons

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Small girl with four advocates of tomorrow!

Introducing ‘Meg, Warrior Princess’

By ~ Meg Bernard ~ SGWPD

Warrior Princess; February 28, 2013

“Never be ashamed of a scar.

It simply means that you were stronger

Than whatever tried to hurt you”

~Unknown

 I enjoy all things girl. Yes, yes, I realize that I wear an ‘interesting array of clothing’ with only MAYBE 1/8th being truly definable as ‘girly’, BUT, trust me, if it’s pink; if it’s sparkly; Meg’s gonna love it! It’s the princess inside of me that never grew up.

For example, I spent my 34th birthday having dinner with Cinderella in Disneyworld. It had been a dream of mine. I almost fell over myself to dance with Prince Charming.

But when I think of a REAL princess, I don’t think of a frivolous, pampered girl who gets whatever she wants. I think of a woman who is charitable and kind. A woman who spends her time giving service to others and helping those who are less fortunate than herself. Someone who loves people and life and finds joy in sharing it.

When someone says ‘Warrior’ what picture comes and to mind? I can say with confidence that it wouldn’t me an image of me. I’m one of those ‘compact’ (aka ‘smallish’) people that others feel the urge to protect. But the definition of ‘warrior’ is; a person who is engaged in or experienced in battle. One who shows great vigor, courage; who will never give up. Who, against all odds, will fight for what they believe. I love the synonyms of warrior. They are champion, fighter, and hero.

Right now each one of us lives in a battle zone, with the battle being unique to each individual. A few years ago, when I walked out of my neurologist’s office, I wasn’t fully aware that in being diagnosed with Parkinson disease, I was beginning the battle of a life time.

Now I will sidetrack and explain to you how I receiving my unusual nickname…Due to an error made by a surgeon during a simple procedure, I spent the majority of the first 3 months of 2013 in various hospitals. I ended up needing many surgeries, several blood transfusions, and almost losing my life on multiple occasions. There was constant worrying and waiting. Praying that this wasn’t the end of my journey. I experienced incredible, almost unendurable physical pain that will be forever etched in my memory.

After my last surgery of that time period, I received a visit from a friend. She asked if she could see my most recent incision. As I moved the hospital gown aside to show her my latest scar, all the air squeezed out of my lungs. I couldn’t breathe. I didn’t recognize myself.

I was aware that my body had become tiny and weak but it was a different sight that shocked me. What had once been the smooth, unblemished abdomen that I was familiar with, was now unrecognizable. I saw my new 8” vertical scar (the third such lifesaving incision made in a matter of only few weeks), a lower horizontal scar, and many, many holes and scars from drains and incisions.

I remember suddenly feeling very confused. All I could think was, why did this happen? How did this happen? Who does this body belong to? I remember feeling like I had lost and I was afraid. But my friend saw it differently.

She looked at my abdomen, and then looked up at me. And with tears sparkling in her eyes she smiled and said “Meg! Look at your beautiful war wounds!” Confused by her words, I looked again at my scars as she said “My dear friend, you have been through a long and frightening battle, and you fought it like a warrior, never giving up and refusing to quit.” I looked back into her eyes as she said “I know that sometimes you were scared that you weren’t going to make it, but look!” and she pointed at my scars “You won Meg! You HAVE BECOME a mighty warrior!!” Then she put her hand on my wet cheek and looked into my eyes and said “and yet you are still the same Meg I have always known and loved, sweet princess Meg.” Which got a genuine, yet tear filled, smile and a from me. Then she made her pronouncement “So, from this day and forever you shall be known as ‘Meg, Warrior Princess’.”

That was a few years ago, now, each day I fight a different battle. Who is my mighty foe? The dreaded dragon Parkinson Disease. I battle each day to move, to stand tall and not fall, to take big steps, to make my voice loud and clear, to brush my teeth, to tie my shoes, to feel confident in public, to write my name legibly, to feed myself, to endure the sometimes overwhelming anxiety, to managing fatigue, to endure the pain of rigidity…the list goes on and on it feels endless as the disease progresses.

Each morning I sit on the edge of my bed and I ask myself ‘who will I be today?’ It is often in those few minutes that I think back to the day that I received my new name. I think of my war wounds; my battle scars; both seen and unseen. I can’t help but acknowledge that this is a long and frightening fight, but I decided that day in my hospital room that I AM a warrior and I will never give up. Does this mean that I am never tired? That I never cry? That I never feel angry? No, I admit that I experience all of those emotions. What my decision means is that I will never stop fighting.

Whether you have Parkinson disease or not, each day you are fighting your own battle which means that each day you also have to ask yourself this same question “Who will I be today?” I wonder what your answer will be. Will you be a Warrior or a Champion? Will you be a Fighter or a Hero? What word or description resonates within you? Which word fills you with the courage and strength that I know you have inside of you as you fight your daily battle?

As for me? I am Meg, Warrior Princess.

6 months later

6 months later at WPC in Montreal