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

~ 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….

 

It’s my Tube-iversary ~ Memories

~ Meg Bernard; Small Girl with Parkinson’s

Happy “tube-iversay” everyone!
November 28, 2015 marked the one year anniversary of the absence of all things swallowed; the insertion of my Jejunostomy feeding tube (it bypasses my stomach feeding directly into the second part of my small intestines). It feels like only weeks ago, yet also a lifetime ago.

**Sidebar** I have chosen not to mention; the green grape and red jujube that I, without thinking, popped into my mouth; as well as the 2 pieces of grape Bubblicious gum, which were accidentally swallowed. For, although it lead to the writing of highly amusing quips for my headstone should said incident bring about my demise; the winner being “she really blew it”; these incidents add so little to my reminiscence.

For your reading enjoyment/education, I will share this year’s top Q&A.

Q. Do you miss food?
A. No

Q. What are the BEST things about having a feeding tube?
A.
1. I can eat while I sleep.
2. I’m never accused of talking with my mouth full.
3. Consuming the same thing every day (Peptamen 1.5) makes meal planning easy.
4. My nieces and nephews think that it’s either; super cool, or, it freaks them out. Both of which I find highly entertaining.
5. I am an inexpensive dining companion.

Q. What are the most challenging things about having a feeding tube?
A.
1. The ‘social’ aspect of eating (I kinda stand out at dinner parties lol).
2. Regularly scheduled tube replacements (there is a ‘regular’ way for things to happen, and there is a ‘Meg’ way for things to happen; whole different ballgame)
3. Being attached to a ‘leash’ (aka my body being attached to a bag full of formula or water via tube) for up to 22 hours a day gets tedious YET also inspires creativity in all things ‘wardrobe’ related!!!

In trying to find the right words to tell you what this life changing thing has taught me and who it has helped me become, I found there were too many; therefore I leave you with this;

~366 days ago, I was ‘meg’.
~365 days ago I began the journey, the battle and the collecting of joy, which make me; the ‘work in progress’; woman you know today, ‘Meg’.

“It is in the fight for life, that I continue to discover my true value; and it was in the realization of my own insignificance, that I learned my true worth.” (~SGwPD)

 

 

The Dragon ~ Does your Parkinson’s have a name?

~ Meg Bernard ~ small girl with Parkinson’s

My PD lives as a separate entity from myself. He holds a human form, black and faceless. He calls himself the dragon, for that is what he is; dangerous and strong; but so am I.
Neither can help but respect the strength and fortitude of the other; for we know each other better than any other pair in existence; because we live the same life.
Each day begins as though we are fencing. We stand and face each other; give a slight bow; and then begin.
Ultimately we both know who will win; I know it; he knows it. Yet the dragon puts all he has into this daily battle, and by doing so, forces me to do the same. The fear and fight required are real. This invisible demon is as tangible to me as friend. There is no easy way out. Everyday, we fight to the end.
Yet, it is because of this that I owe a degree of gratitude to my nemesis. In the end it is how hard I had to fight that has created this person that I am proud to be. Yes, a person with war wounds and battle scars; a person exhausted and desperate for sleep at the end of every day; but always a person stronger than the day before. For this, I thank him.
~ SGwPD
The Dragon

The Dragon ~ Black and faceless; we stand and face each other; give a slight bow; and then begin.

 

A LARGE PD DETOUR

Dearest readers…

A funny thing happened upon my return from the magical land of all things Disney.

PD decided to have a diva moment, which required more than one hospital stay.

Due to this detour I will not be sharing the results of the magical trip yet, instead I will share what I learned about hospitals and also what I learned about myself.

I hope you will forgive the delay and enjoy what came next…

Much love, Meg

 

 

 

 

 

 

 

 

 

 

She’s Leaving on a Jet Plane ~ Parkinson’s pre-vacation jitters?

Watch out Orlando! Here comes Meg!!

All my bags are packed, I'm ready to go...

All my bags are packed, I’m ready to go…

This “Small girl with Parkinson’s”…plus an entourage of people who are all officially taller than her, are heading to Orlando Florida, where yes, we will do everything Disney and Universal (Harry Potter world!! Woohoo! I’m a ‘not so closet Potter fan’) and hopefully sleep. Phew!

But in true ‘Small girl’ style, I have also decided to make this trip something of an experiment….

Small girl’s last trip to Orlando was before my diagnosis of Parkinson disease, when symptoms were just beginning to show…what challenges will show themselves now that my disease has substantially progressed? Hmmmm…

***I wrote this blog a few days ago. So this paragraph was added today***

***Due to unforeseen complications. Small girl had emergency surgery yesterday due to serious complications with her feeding tube…BUT with true “Small girl” determination I am on the road, as I write this, heading to an airport 3 hours south…(and because I don’t want to get scolded, I choose to plead the 5th and not disclose how I’m feeling right now…) WiIl this unexpected ‘twist in the road’, which affects my PD, change the outcome of said trip? Hmmmm….***

Also, Small/tall children are now all teenagers, granted they are delightful teenagers, yet one with autism and 2 with serious medical conditions…than add teenage hormones into mix? Hmmmm….

And then there is ‘Beastie’ (Small girl’s kitty). Last time I was away for a few days, I had to FaceTime Beastie in order to get him to eat, drink and sleep. Yes, I actually had a FaceTime session with my cat. Don’t laugh! Will this separation anxiety create a challenge for both girl and cat? Hmmmm……

Also, now this is a very serious possibility…Will “Small girl with Parkinson’s” ever return? Or will she remain forever in the Magic Kingdom; a place where spontaneously bursting into song is not seen as an oddity but is instead encouraged!!! Hmmmm…

But more than anything this is to test Small girl’s ability to travel. For example, try crossing the border with 27 boxes of formula; my only food; which must fly as carry on luggage. As each box is 8 ounces, an amount greater than the accepted 4 ounces, well, can anyone say ‘customs nightmare?’ hmmmm….

I’m genuinely curious to see how the next few weeks play out, and then I’m excited to share the outcome with you. I’m promising many, many laughs, some travel advice, and I wouldn’t be surprised if a few tears of frustration enter the mix. But hey, nothing wrong with that!

It’s gonna be a blast!!!!

Much love,
~ Meg, Small girl with Parkinson’s

Finding Your Fight ~ Did you know it was missing?

What is this feeling?

I felt differently than I had a few weeks ago, but I couldn’t put a name to it; a foreign thing; some strange entity that at times had a paralyzing effect and at other times had me in a state of mind that wouldn’t allow me to hold still.

Then, as is often the case, from out of nowhere, came the moment of clarity. A name for this killer of spirits. Somehow this clever, treacherous adversary had, with unnerving ease, crept into my mind during one of my more vulnerable moments. It was fear.

This wasn’t the first time that my fight, the armor I surround myself with, had been checked for weak points of entry; that doubt had tried to take root in my mind saying, “You can’t handle this. You won’t make it through the challenges being thrown at you”. But this time was unique. This time was the first time those piercingly whispered words of doubt had finally penetrated my armor; my fight; causing me to wonder if I was wrong.

I believe that I play a strong role in deciding my future. On many occasions I have faced the choice; a few times the ultimate choice; to give up or to fight and keep going. And because I have such a firm knowledge that I have purpose in this world; have much left to do; have people who need me, especially my children; I have always put everything that is in me to keep moving forward and have known with certainty that I could. So how had fear snuck it?

What a horrible, disgusting experience it is; feeling stuck in a space where one’s core beliefs are being constantly tested. I have been afraid before; I wouldn’t be human otherwise, but this was new. I was standing face to face with something that showed no mercy. An endless, wordless, darkness; and I didn’t like it. So I decided to ignore it; pretend it wasn’t there; it would just go away. Then one day I felt it; realized that hiding was actually making me weaker by the moment. Fear, not I, was winning, and the only way for me to defeat this creature was to shine a light on it; force it out of its dark corner, so that I could see what I was up against; only then could I fight back.

I recalled the words of Frank Herbert, “I will face my fear. I will permit it to pass through me. And when it has gone past I will turn the inner eye to see its path. Where the fear has gone there will be nothing. Only I will remain.” So I reached inside myself; held this fear in my hands; looked at it from all angles, and finally recognized it for what it was. It, not I, was small; it, not I, was weak. I told this fear that it would not own me; that it could not win; that it held no power over me; then I sent it away.

I know now, the only way fear could have won is if I had decided that the outcome was hopeless and chosen not to fight at all. It is only by facing our opponent that we can avoid further attacks and truly defeat that which threatens us. We never lose our ability to fight unless we choose to. It remains inside us, only sometimes it is overshadowed by something that pretends to be bigger and stronger.

The moment fear fled, I took a long life-giving breath and a deep sigh of relief. I felt my fight stand up, smile, then begin to shine; bigger, brighter, and stronger than ever before.

~ Meg Bernard

If you know the enemy and know youself you need not fear the results of a hundred battles. ~Sun Tzu

If you know the enemy and know yourself you need not fear the results of a hundred battles. ~Sun Tzu

PART 2 ~ Wherever we go we Plant Seeds ~ How PD Made me a Stronger Person

‘How PD Made Me Stronger Person ~ …and changed my life, for the better

**If you haven’t read Part 1 I recommend scrolling back on the blog to read it.

These are small samples taken from the reports I would send to friends and family while I spent many weeks in the hospital this past winter, and the result, both emotionally and physically.

Warrior princesses aren’t invincible.

I’m in the hospital due to “Complications” with my Parkinson’s. No worries! I’ll lick my wounds; dust myself off; put on my favorite combat boots, and stride gracefully into battle…after they find out what’s wrong with me.

I am very sick.

Mid-night conversation with my nurse.

“I knew what kind of person you are the second I saw you,” he says “Yep, this is your breath between battles.”
“But I’m tired,” I say “I don’t want another battle”.
He turns and looks at me sitting on my bed, “Yeah, right now you’re tiny, and defeated, but YOU ARE supposed to do great things. So, rest up; a storm is coming and I have this really cool feeling that you’ll be right in the middle of it…..now go to sleep!”

I’m sitting in the dark on a balcony overlooking the atrium. The lights cast a calming shadow…this could be peaceful.

I’m remembering how many times today I’ve sat alone; doctors in front of me; my eyes on the ground; refusing to let tears out. Thinking “it wasn’t supposed to be like this.”

Like what?
What a pointless question!

The question that matters is “Meg, what are you going to do with it?”

SILLINESS

They came to take my blood before my first dose of PD meds. Asked me to straighten my arm. Seriously? She tried, causing a poorly contained scream of pain. Poor woman. No meds = painful rigidity. Fact.

I have a tube up my nose, and I decorated my IV pole like a Christmas tree. Does life get any better?

ROOMMATES

Through this whole experience so far, I haven’t lost my smile, but my new roommate Meghann (That’s right “Meg with 2 N’s”) brought back my ‘giggle’. I believe I’ve been sent an angel. We’ve bonded over toothpaste; and been serenaded by our nurse.

I thought of that quote about being a blessing to others in the midst of your storm. It’s something as simple as remembering a name; saying hello; smiling; telling the nurses they “so totally rock”. ‘Meg with 2 N’s’ is my blessing as she goes through her own storm.

Melissa and I are a “give and give” pair.

Midnight; the “blood taker” comes for 20 vials of Melissa’s blood.
In my half asleep state, I hear distress coming from her direction so I shout the first thing I think of…”ICE CREAM!” For 20 vials, we discuss the concept of “birthday cake” ice cream. 2-in-1. Brilliant.
Next morning brought a new tube up my nose and much sickness. I collapse; eyes closed; tremors from PD overwhelming. Suddenly a warm blanket, then another and another. I open my eyes. Melissa. Sweet service.

THE NEWS

I know it has been hard to watch. I hear “it’s not right, you’re too young”; witness tears of frustration; proud tears for my courage. They have amazing empathy. “How have you endured this,” they ask. Easy answer. I know I MUST be healthy and strong for 3 children. My strength and courage leave me in awe. I couldn’t have done it alone. Angels everywhere.

I now own a Gastro-Jejunostomy feeding tube (J-tube). It bypasses my stomach ending in the jejunum of my small intestine. This means food (which consists of only formula), water, and medication (crushed and made into solutions) all go into the tube. Nothing by mouth. I’m an inexpensive date.

I wish I had eaten more pie at Thanksgiving

CONFESSION

Today I hid…under my blankets.

I’m a bright woman, I was aware they knew where I was. It was more of a ‘hint’ thing. Slightly more subtle than yelling “Shhhhhh!”

Then I hear Annie having a spinal tap; I feel her pain and wish it were my own. I then hold her hand when just moments before I had been hiding. How does this happen? The change from thinking of our own trials, to being willing to take on another’s pain?

GOING HOME

Physically I’m not the same as I was, but I have gratitude for each day I live. But mostly I’m not the same person I was. I wouldn’t want to go back to who I was before, these experiences have made me a better and stronger person. A person I am grateful to have become.

Wherever we go, we plant seeds. Seeds of kindness, sunshine and mutual support; seeds that will grow into something strong, beautiful and nurturing, so that even in the most difficult of circumstances beautiful flowers will bloom. These flowers are what help us remember what is really important in life, the real purpose of our journey.

We all plant seeds wherever we go.

We all plant seeds wherever we go.