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!

Parkinson Awareness Month vs. The Small girl ~ What we have here is a failure to communicate

~ by Meg Bernard, small girl with parkinson’s

YOU HAVE GOT TO BE KIDDING ME!

Yes friends, that would be how the first day of ‘Parkinson awareness month’ began in this small girl’s house!

I can still picture it so clearly in my mind…allow me to reminisce…

It was April 1st, 2016, 12:01am…the dragon, who had been lurking in a corner all night, suddenly springs onto the end of my bed; excitedly giggling like a 5 year old on Christmas morning; waiting for me to wake up…

I should explain…

You see, it appears that there was some sort of a mix up. April is Parkinson AWARENESS month; not PARKINSON month. This is a month where we get to advocate, educate and raise awareness; unfortunately the ‘dragon’ (my unique version of PD) chose to completely misunderstand this fact. I can only assume that he forgot to read the fine print because somehow he had come to the conclusion that this was a month long celebration; a birthday party of sorts; meant JUST FOR HIM!!

*feel free to gasp loudly…I did!*

So it was, just a few days ago, the morning of April 1st, that I opened my eyes. I immediately saw the giggling shadow at the end of my bed and only had time to think “oh no” before, at a rapid and excited pace, he started to list off the awesome plans he had made for the day; all of which, of course, included me. Sigh.

He began:

“Notice how you can’t move your legs?! That’s me!! I did that!”

“Are you feeling the awful and all consuming pain that comes only from rigidity? You guessed it! That’s me as well!”

Giggles and more giggles, unable to contain his glee, he continued:

“Then, you’re gonna love this one, later today, I’m going to make youover balance while you are getting up out of a chair causing you; wait for it; to FALL!”

“Oh, and just wait until you try brushing your teeth (giggle) or putting your shoes on (chuckle)….OH, I CAN HARDLY WAIT!!”

I groan as he pauses to look over his list; wouldn’t want to miss anything; then slowly try to shift myself so that I’m facing the right way to get out of bed.

“IT GET’S BETTER!!” He explodes, “as soon as you put your meds into your j-tube, I’ve planned for severe nausea to overwhelm you!”

I put my hands over my ears to block out his voice.

“Hey!” He gives me a sharp spasm in my leg to get my attention “why aren’t you listening to me?” He sticks out his lower lip and pouts.

Oh good grief.

“Dragon” I say, my voice exhausted, “why don’t we just do this like we do everyday; surprise me.” He looks slightly disappointed; explaining that telling me was half the fun; but nods his head in agreement. I continue to try and sit up as he throws in “but don’t think this gets you off the hook; this is MY special month and I won’t be happy until I’ve completed my WHOLE list!”.

Of course you won’t, I think to myself, awesome.

I confess that a small part of me hoped that this was some elaborate April fools day joke…not so lucky.

So, friends, it looks like I’m going to be spending an extra special month with my constantly present companion; I suppose everyone deserves special acknowledgement from time to time, but seriously?

Ultimately all that I can think of to write is, THANK GOODNESS that I have all of you; thank goodness that I’m not alone!

Happy Parkinson Awareness Month my friends. Let’s hold our breaths, cross our fingers and hope that time flies!!

Have Courage and Be Kind.

Much love ~ Meg; small girl with Parkinson’s; warrior princess; slayer of dragons; wolf amidst sheep; and lover of life!

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“…it’s only April 3rd!!!”

Some of the “fine print” of PD (which, of course, none of us read) ~ Shoes?

By ~ Meg Bernard

I saw a posting about shoes earlier today…
As a vertically challenged individual I, very early in life, became a master of walking in anything up to height of 4″ heels. I even wore them pregnant; hey, if JLo could do it, darn it, so could I!

My challenges with balance hit early in my PD career and about 2 years ago, after a few MAJOR catastrophes, it became very clear that I needed to make two important changes in my life; the addition of a cane, which, by the way, has created a fun new way to accessorize; followed by a mighty, out with the heels and in with the flats.

At first it was simply a sad new reason to shop; but quickly became the discovery of a whole new world of possibilities; finally ending with a wholehearted embracing of my smallness!! I love flat shoes!

Parkinson’s may have tried to trick me into thinking I was losing something…HA!…joke’s on him!!

Much love ~ Meg; Small Girl With Parkinson’s

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A selection of my favorites!

There is Life Beyond Stage Three Parkinson’s ~ Live like we are living!

~ By Meg Bernard ~

*An apology to my regular readers; a sidetrack in the ongoing series of “Small Girl’s Souvenirs” just HAD to happen*

EMERGENCY FEEDING TUBE CHANGE #3

No joke! On Thursday, February 25, 2016, I received my 3rd PEGJ feeding tube in 3 weeks…my 8th tube during this past year (ideally I should just be receiving my third right now). But let me back up a little…

For those of you who don’t know her, this is my co-anomaly Jasmine! She has Parkinson’s disease, which has resulted in a paralyzed stomach, JUST LIKE ME! As much as I wouldn’t wish this upon anyone, I’ve got to admit that having a ‘partner in crime’ rocks.

PD tends to be measured in stages of 1-5, with 5 being the most severe; I’m sitting, centre stage, at a 4…(I would bow to the applause but it hurts to bend my back)

Thursday morning, I was feeling some concern caused by the realization that there is fear, sometimes terror, in the hearts of those living with PD in regard to the inevitable arrival of…well, anything higher then a 3. I agree that it is a frightening thought; I’m living it, so I can say that with authority! Stage 4 robs us of our independence; it takes away the ability to walk without assistance…but what caused my concern is that many consider it to be the beginning of the end; that some look to this future and see it as a life not worth living; where as Jasmine and I have made the decision to never stop living.

It was in the midst of this frustration that I hurled out the words;

“There is Life Beyond Stage 3 Parkinson’s!!”

I suddenly realized that I have reached a new place in the middle of my ‘story’ with PD; two paths have converged. Not only am I raising awareness that there are young people with this wicked, cruel and debilitating disease but also; due to the rapid progression of my particular version as well as the unexpected symptom of a paralyzed stomach; I am also raising awareness to those who do have PD; that there is life after stage 3. We are not going to give up; nor will we to give in to the primal anger, rage and fear in order to fight this; instead we are stepping forward, with primal hope and love, and we are going to live this! We have decided to…

Live like we are living; not like we’re dying!

…a few hours later, I rushed to the hospital to get an emergency feeding tube change; my third in 3 weeks; my feeding tube had, once again, ended up leaving my intestines and landing in my stomach, where it does nothing but cause debilitating nausea instead of allowing my body to absorb nutrients and hydration. It also, frighteningly, does not allow my body to absorb my medication; my lifeline in this disease.

Yes, my tube had (for the third time) left it’s happy home in my intestines, for an inhospitable place in my stomach, because the peristaltic waves that our intestines need to move food through our digestive system; the ‘pull’ of which being a huge part of what holds my feeding tube in place; are now almost non-existent. The surgeon added 3″ onto the length of my tube in the hope that it will sit far enough into my intestines that it will stay in place. I will now be eating almost 24 hours a day in the hope of maintaining my, already too low, body weight.

Jasmine and I are living proof that life doesn’t end when your nervous system stops working. We are living proof that happiness and love can overcome the darkest days, the toughest illness can bring.
We refuse to sit on the curb and give up; we choose to stand tall and face whatever comes at us head on!

As we do so, we invite you all to join us as we

“LIVE LIKE WE ARE LIVING, NOT LIKE WE’RE DYING!” ~ (Jasmine and Meg)

Much love ~ Meg; SGwP

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My PD ‘Mind over Matter’ ~ Seriously? Another software update?

The ‘Small Girl’s souvenirs of life’ part 2 ~ by Meg Bernard

“NO WAY! THAT WAS AWESOME!” Closely followed by a look of ‘freakish awe’ and the words, “you’re really weird!” To which I reply “yes, I am” because I’m not about to argue with the obvious. I’m often asked “how did you do it?”…ohhh if you only knew how badly I want to casually reply, “oh, because I’m a witch”; I think the reaction could possibly be ‘YouTube worthy’…so I explain the methods I actually use, and by the end of the conversation, the look on their faces often tell me that I might was well have said that I am a witch. A girl just can’t win sometimes.

To bring you up to speed, this conversation takes place in a hospital, or more accurately in many hospitals and on many occasions. The script varies slightly (this particular example took place after a nurse spent 30 minutes poking and digging; attempting to start an IV in my arm (eventually, with guidance, the impossible was achieved); but the look of freakish awe remains the same. The ‘how do you do it? ‘ of this situation is the fact that during the whole 30 minutes I hadn’t flinched once; “how do you do it?’ refers to my ability to separate myself from pain. Yep. Weird.

For as long as I can remember my body has been “beautifully misunderstood” (the words I use to replace odd or strange), with what appeared to be a never ending onslaught of physical challenges requiring visits to an onslaught of specialists who would treat symptoms, sometimes finding answers; therefore pain became a natural part of my existence. Over the years I started to experiment with different coping strategies for pain until, one day, I discovered that a skill I use in other areas of my life applied perfectly to this one also. I learned how to separate my mind from physical pain. Oh, I am perfectly aware that the pain is occurring; that my body does like it; and that the stress from pain added to the stress from the cause of the pain takes a huge toll on my well-being; I just chose not to acknowledge it.

The skill of self-mastery; or mind over matter; is something I have spent my whole life working on. There is so much of life that is not within my control; so it became important for me to know that my mind; my spirit; the ‘Princess’ inside of my warrior; had the ability to make decisions for what I do have control over.

It is in using this skill that I have, in the past, been able to push beyond what others, sometimes myself, saw as my physical or emotional capacity. Some examples could be; learning how to physically defend myself against a person three times my size and strength (which, unfortunately I had to use, but fortunately was prepared for), or to prepare myself and then accomplish my dream of climbing a mountain, which I had been told I would never be capable of.

Of course those are pre-PD examples, so I will also include; learning how to sit up in bed in the morning followed by getting myself into a standing position and then, to prevent falling, using a walker to reach the washroom. There is also my virtual mountain; climbing a flight of stairs; which, with my specific PD symptoms, takes more energy, burns more calories and gives me ten times the feeling of accomplishment than climbing my ‘true life’ mountains ever did.

Mind over matter, spirit over body; princess over warrior; this has allowed me to accomplish things I never thought I could. Then came the discovery that I could apply a slightly modified version of this same skill set in order to handle the discomfort of pain…not to cure it, not to make it disappear, certainly not to pretend it isn’t there…but to live with it, and not allow it to possess me and control more of me than the physical limitations of my body already did.

I have experienced some amazingly far fetched physical challenges in my life, but have decided to focus on the past 5 years; a time period in which ‘mind over matter’ became the weapon of choice in my ‘zombie apocalypse’ arsenal; the time period which followed my diagnosis of Parkinson’s disease.

I’ll make this VERY CLEAR straight off:
1. YES, I believe in taking medication for my Parkinson’s disease and receiving all of the benefits they can bring to my life. I am so grateful for my medication. 
2. NO, the ‘survival skill’ I have developed for dealing with my PD does not stop tremors, it doesn’t keep me from falling down, it didn’t stop my stomach paralysis and keep me from needing a feeding tube; it doesn’t stop the nasty non motor symptoms; it doesn’t cure nausea and it has not eliminated my severe rigidity and the tremendous pain that accompanies it. I DO NOT have a cure for Parkinson’s. I only have the experiences of one small girl, and how she has managed to stay sane…feel free to debate that last statement.

Since  Parkinson’s disease is a progressive disease; for those who are unfamiliar, I will compare it’s progressive nature to the installation of software on a computer.

Often when I have installed new software on my computer, I figure out how it works, and think that it’s smooth sailing from there. BUT,  every now and then, at random intervals, I’ll get a ‘pop-up’ on my screen letting me know that a ‘new and improved’ update is available to install with just the click of a button; so I click the button and often discover that this update requires me to learn  a ton of different things in order to make the software perform as I would like it to. After being diagnosed with PD, I spent time figuring out how this new body worked; but I have found that just when I think I’ve got it figured out, a random ‘pop-up’ will appear, installing an ‘update’ that requires me to learn, all over again, how to get my body to work as I would like it to. One unfortunate difference between ‘software updates’ and ‘PD progression’ is that we don’t have the luxury of hitting that awesome “remind me later” button; our ‘new and improved’ version downloads without consent. This is where the discovery of using my mind to separate itself from PD pain became so vitally important; as  PD progresses, my ability to adapt to it needs just as progressive.

We all have different ways and different motivations for handling the challenges PD brings into our lives; I wish I was capable of finding “THE ONE TRUE WAY”, thereby bringing some relief to all of you; What I DO have are the experiences and stories that have helped me become my own PD expert.

So, in my next ‘Small Girl’s Souvenirs of life’ I’ll tell you a bit about the day ‘needles stopped hurting’; the day that my fierce love for my children overcame the pain of a life saving, emergency abdominal incision (WIDE AWAKE…NO PAIN MEDS…NO JOKE); as well as “Small Girl’s ‘PD pain’ survival guide” otherwise know as “Zeroing the Scale”.

Much love ~ Meg; SGwP

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Introducing the Souvenirs of a Small Girl with Parkinson’s ~ What legacy will you leave?

By Meg Bernard ~ SGwP

I want to leave a legacy; a piece of myself; a souvenir of my life; something that will remain on this earth long after I do. A legacy that will; with huge smiles, arms spread wide, and an open heart say, “Meg was here and she loved each and every one of you!”

My desire to do this is hard to explain, but there is something inside of me that has, with great determination, been telling me to do something about this desire RIGHT NOW! (I can be rather bossy and impatient with myself on occasion)

My greatest legacy is, and will always be, my 3 gorgeous children; each one a flower; the rarest and most beautiful of all flowers; that has both bloomed and thrived in the midst of adversity. I will be forever grateful to have been their mother; that I was given the gift of helping them discover who they truly are.

I have had, what some might call, a strange life. I know that all of us have had our own unique challenges and experiences; some happy, some sad; but I’m just brave enough to admit that my life has been seriously?-‘no way!’-crazy-unique. These experiences, and the way in which they have influenced, molded, and shaped my life; have been nothing short of a long walk through a refiners fire.

So while pondering what my legacy might be, I realized that sharing my experiences; my treasures, and the person that I have become because of them; could be an amazing legacy if it helps even one person through a challenging time.

STOP!!!
Now don’t go all freaking out on me; thinking that I’m doing this now because my hand is on the doorknob of death’s door!!! So put that out of your mind right now! None of us knows how long we will be given; none of us knows what tomorrow will hold; and I do not want to have missed the opportunity to have shared some of my pearls…my treasures.

So, over the next few months I will, at random moments, (to be Meg is to be random) share with you some stories about the small girl’s Souvenirs of Life’.

For today, I shall leave you with this…

Looking toward the future can be a hard thing. Sometimes, just to stand it, I need to view life a week at a time; a day at a time; an hour at a time and yes, sometimes it comes down to a breath at a time. But then there are those days when, like a breath of fresh air, I look into the future and stand tall. Instead of a veil of darkness and unknowns, I see a sunlit field full of life and possibilities, and I smile! My life will never be what I planned it to be; whose life is really; but instead of wasting time dwelling on what I am and will miss, I’m going to rejoice in what could be.
When My time comes to sing my death song, I will do so with a smile, knowing with confidence that I have not lived like I’m dying; I have lived like I’m living.” (SGwP)

Much love ~ Meg

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“Keep your face to the sunshine…”

 

Small Girl with Parkinson’s writes a poem, then wonders ~ How do you survive your storms?

~ Meg Bernard; SGwP

Do you have a storm?

It may sound like rhetorical question; and now that I stop and think about it, you’re absolutely right, it is; so feel free not to answer that one as I am confident that we all have what could, metaphorically, be called ‘a storm’ as not one of us is immune to the pressures and plot twists of life. I shall therefore change my question slightly…

How do you survive your storms?

*Sidenote* It’s quite possible that some of you are thinking “umm…Small Girl…wasn’t it just this past spring that you went on and on about your love for thunderstorms and how you dance with the rain etc etc…so what’s with this ‘surviving a storm’ thing?” A very good question dear friends and with it a very good answer; I like REAL thunderstorms, you know, the ones that actually get me wet; the ones that live in my head? Well…not quite so much.

So here we all sit, facing our storms. Can’t go over them, can’t go under them, can’t go around them…straight through them it is.

To answer to my own question; as a singer, a songwriter, a lyricist, a writer and a lover of words; there are times when I find that some of my thoughts are best expressed in the form of a poem. I ask for your indulgence as I do just that.

STORM

“Where once was light, in darkness, gone
What once I knew, forgotten, wrong
That place, with soaring wings once flown
Now lay concealed, a thing unknown

“With every heartbeat torn and tossed
With every effort given, lost
When misery enslaved my mind
In that dark moment I did find

“A spark, from embers deep inside
Behind the broken parts did hide
And with each breath I felt begin
That single spark catch fire within

“When all around me shattered; broke
The fire inside, new life awoke
Then, fueled on by the fight I give
It’s in my storm I learned to live

“Courage in my veins; it flows
The strength inside, like lightening, grows
With whispered prayer, I face my fight
My fire, glowing, stronger, bright

“Moving forward; leave my past
What fire creates is built to last
The life I lost, I will not mourn
Bring on the rain, I’ll take the storm”

How do you survive your storms?

Much love ~ Meg

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