Celebrating life

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

/ Meg Urquhart / 9 Comments

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!

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

/ Meg Urquhart / 6 Comments

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?

/ Meg Urquhart / 3 Comments

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…”

 

Are your doctor’s scared of you yet?

/ Meg Urquhart / 6 Comments

By Meg Bernard, SGwP

IT’S OFFICIAL! As of this past Monday I have had 7 emergency J-tube exchanges in 10 weeks; 4 of these took place just a day apart. This realization has me skipping down supermarket isles, giving high-fives to all the shoppers I pass who are, of course, just as thrilled as I am; the supermarket, most definitely, being the first place you would expect find a girl, who can’t eat food, when she’s celebrating.

So, while singing along to Lesley Gore’s “Sunshine, Lollipops and Rainbows”; shaking pom-poms; and doing high kicks; I’ve let my mind wander to hospital visits gone by….whether the visit is planned, or I’m racing full speed to the emergency room, there is a vision that never fails to lazily swim to the forefront of my mind….

It begins with Dr. Joe (I couldn’t use Dr. Smith, as natural reflex would demand, because he exists in the form of my brother-in-law). Dr. Joe; straightening a sparkling white lab coat and pouring that first cup of coffee; greets colleagues with a Colgate smile and a casual ‘hey there’ as they walk by.

Having had a decent nights sleep; with The Carpenters ‘Top of the World’, number one hit from 1973, playing on that ‘continuous repeat’ cycle in the back of his mind; with a distinct ‘spring’ in each step and a decidedly ‘can do’ feeling in the air; Dr. Joe is certain that nothing could ruin this ‘feel good’ moment!

*Enter Nurse Jenny*

Biting her bottom lip, and with a quivering hand, she gives Dr. Joe a tentative tap on the shoulder, “Dr. Joe?” she says in a quiet voice, “I need to talk to you about a change in today’s schedule”. With smile intact, ready to wish nurse Jenny a cheerful “good morning!!” Dr. Joe spins around. Upon seeing the look of terror in nurse Jenny’s eyes, said smile is immediately replaced with a wild look; one which bears a remarkable resemblance to ‘deer caught in headlights’; Dr. Joe’s cheerful words are immediately replaced by,”please don’t tell me….” to which nurse Jenny replies “Yes, Dr. Joe, it’s Meg…”

The scene that follows this moment in my mind cannot be put into words, so for your enjoyment I will let pictures “do the talking”.

First there is…

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Followed closely by…

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And likely ending with…

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Despite the image this ‘witty dramatization” may bring to your mind  regarding my history as a patient, I would like to point out “IT’S NOT MY FAULT!” Nor is it the fault of any of my doctors who; if all else failed; would go so far as to hold my Jtube in with Duct Tape or super glue if possible. I’m certain I would have been given the world’s largest ‘gold star’ if these things were based solely on effort. But many, many, moons ago we all came to the realization, that if something CAN go wrong; when it comes MEG; it typically WILL go wrong (no ‘ish’ about it). Hey, a body doesn’t earn the title of anomaly, enigma, and beautifully misunderstood by being super easy to work with; this takes natural talent!

But with all this ‘talent’; the pain, nausea, frustration, tired eyes, sleepless nights, and very tear stained cheeks; comes the question “will this be my last time?” And whether it is or isn’t “how will I choose to live today?” After countless days of intense pain from both Parkinson’s and a feeding tube that refuses to stay put; after countless days of wretched, constant nausea and dry heaving; after countless days of forcing medication  via J-tube, knowing that this particular tube could last me a day or (I can only pray) a few weeks; I ask myself again “how will I choose to live today?” The beauty of the answer? This is the one thing, the ONLY thing that I actually get to decide.

It’s on days like this that I often recall these famous words, written by Robert Frost…

“Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference.”

Remember my dear friends; live with no regrets; have courage and be kind; refuse to live each day like it could be your last, live like you are living and enjoy each breath!

Much love from The Small Girl ~ Meg

~ Sending eternal gratitude to those doctors who I owe every day of my life to; thank you for the gift of borrowed time ~

Five years with PD and counting ~ How do you celebrate?

/ Meg Urquhart / Leave a comment

~ Meg Bernard; Small Girl with Parkinson’s.

Wednesday, December 2nd, 2015 was my 5th PD-versary; the 5th anniversary of the day I received my official diagnosis of Parkinson disease. Although I was 33 at the time, now that we know what we are looking for, my symptoms can be traced back as far as age 19.

My PD-versary is a special day that I celebrate, in private, every year…though, can I really call something private when I excitedly proclaim it to my children the moment I see them (or anyone else for that matter); while also making and wearing a glitter glue “announcement”; pinning to myself like a badge of honour?…perhaps the best I can do is call it “mostly private” (thank you “Princess Bride”).

Last year, one of my small/tall daughters asked me a very insightful question, “Mom, why do you celebrate sad things?” My explanation was simple…I am not celebrating the fact that I HAVE Parkinson’s; I am celebrating the fact that I LIVE with Parkinson’s.

By celebrating the passing of another year, I am choosing to celebrate the beautiful life I have decided to live…Parkinson’s just comes along for the ride. As I reflect on the year behind me; though, without doubt, one of the most challenging of my life; I can truly say that I have never been more grateful or felt so blessed.

“WE ARE ALL given the gift of a new day simply by waking up. It’s up to us to find a way to celebrate it, share it, and enhance it.
“Lift hearts, lift spirits, rise above, find joy and live! In many cases things haven’t turned out the way we planned…but I can’t get rid of this feeling that the best is yet to come!” ~ SGwPD

~ With much love….