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!

9 thoughts on “Parkinson’s and the Next Generation ~ the advocates of tomorrow!

  1. Oh, Meg…thank you so much for sharing….what a wonderful difference you are making…and, could you please tell your niece that her poem is magical and thoughtful and inspiring? Sending you prayers… 🙂

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  2. This is a very up uplifting blog. Bio chemistry is moving very fast these days, even though People have said O a cur for Parkinson’s is only ten years for the last 40 years hummm. I have read a dozen Bio chemistry recent articles regarding Parkinson’s. The fallowing steps are in the late testing stages and are about to start testing in primate; sadly a necessity. A artificial anti body to mop up toxic proteins Which are generated from a broken Neurons and propagate from Neuron to Neuron. and form Louie bodies. Next Using The CRISPR-Cas9 protein can edit or repair DNA in cell fixing the neuron. Make that person stem cell from there own cells is already being done at medical facilities to replace any deal neurons. These three steps will be the cure, but they are 5 to 10 years before I can be cured of Parkinson’s, that’s a long 5 to 10 years. So what are you going to with you life when You are cured of Parkinson’s.

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  3. Hi Meg, it is me Ian. I am happy that I got to meet you in person today. When I punched in ‘smallgirlwithparkinsons’ so many articles came up regarding you. You have many posts, just going through the posts I know that you are a dedicated blogger and that you have a lot to say to help change the public’s perception of Parkinson’s Disorder. You seem like a resilient person. Bye bye for now.

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    • Hi Ian!
      It’s great to here from you!
      Thank you for reading my blog and for your kind words; I certainly am doing my best to educate the public about what having PD really means! I’m grateful for your willingness to be a part of that.
      Resilience is an important thing to learn. It’s something that you will be learning more about in this next while with your grandma. Remember to show your mom a lot of love during this time and help her as much as possible.
      Thank you for the example you set!
      Enjoy your week!

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  4. Hi Meg,

    It’s Deanna Emberg, we were friends in Riverbend ward. I just want to say I remember you and have known of your PD, and admire your grace and courage. You inspire me, and thank you for sharing your story. You are making a difference.

    Love Deanna

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