The Embers in the Ashes ~ have you found yours?

By ~ Meg Bernard; small girl with parkinson’s

I wrote and performed this song for the Parkinson Alberta ‘Hope Conference’ two years ago this week. It feels like yesterday until I realize how much has happened during  the past two years in my ‘PD world’.

This performance was a significant event for me, not only because I enjoy writing, singing and performing something that I hope sends a message of strength and courage to my PD family; but also because it was after this performance that; due to my the ever increasing severity of the symptoms of my disease; I made the decision to  retire my guitar, my voice and my song writing.

I had lost the ability to play the piano a few years previously; I had come to accept this and was grateful that I still had other ways of creating the music I love; but while performing and then afterwards while watching this recording of my performance I realized that continuing to try to use these gifts was becoming a heartbreaking experience. I felt no joy as my hands fumbling through chord changes; I felt discouraged and insecure when trying to use a voice that ‘once upon a time’ I had complete confidence in; I could no longer trust it to do what I asked of it. What was once a joyful, exciting and fun thing had now become a complete frustration; I found that by continuing to try to use my hands and voice as I once had only made the reality of the downward slope of my disease more painful, both physically and emotionally. So this performance was to be my finale.

BUT this past September something magical happened. I was presented with an opportunity for a ‘dream come true’ experience. I was invited to perform some of my original songs at the World Parkinson Congress (WPC) which was being held in Portland. I had a tough decision to make. It had been a year and a half since I had picked up my guitar and I hadn’t kept up with the necessary vocal exercises that help keep a voice strong. My insecurities hit hard and I almost said no; then it struck me…this had been my dream since the previous WPC held three years before. Was I actually going to let this disease stop me from living it? Yes, I knew that it was impossible to play and sing as I once had, but if ever there was a forgiving crowd it was this one; a room full of other people with PD, their care partners as well as medical professionals; all of whom  would understand exactly what I was up against.

There were definitely tears of frustration as I attempted to prepare; I almost backed out a few times; but when the time came, my guitar and I were both on the plane to Portland.

I’m proud to say that I got up on that stage with a feeling of confidence. My performance was far from perfect but I did my very best and sang with all of my heart; but it was AFTER I had finished my performance that the true test occurred. I had been sitting on a stool as I played my guitar and sang, and upon finishing I discovered, with mounting panic; that I couldn’t let go of the guitar; my hand was seized in place; I also found that I had become a statue as I sang and there was no way that I could get off of the stool on my own. A hundred thoughts rushed through my mind in the matter of a few seconds as I tried to figure out how to extricate myself from what I thought to be a most embarrassing situation. I then experienced a ‘burst of light and knowledge;  I realized how prideful I was behaving. I remembered that I wasn’t the only one in the room who would be in exactly the same boat I was; and more likely had experienced such situations while surrounded by strangers as opposed to an audience who would completely understand and think no less of me. So I put my mouth up to the microphone that was on the stand in front of me and said two simple words, “I’m stuck”.

I was immediately embraced with support. I felt the guitar being pried out of my aching hand; followed by someone very gently helping my painful and aching body onto to it’s feet and safely back to a seat in the crowd. What I remember most clearly and with great emotion is not my singing; not what I worked so hard to prepare for. The most memorable and beautiful moment occurred when I made it back to my seat because THAT is when the applause became thunderous and THAT was when the standing ovation occurred. It was not my music that was being celebrated; it was the fight that I put into accomplishing my music that was being celebrated. It was the effort, not the outcome. It is one of the most beautiful and defining moments of my life…

BUT the pain also served to reaffirm my previous decision; I knew that it was time to ‘for real’ retire my music.

It was only a few weeks later that I received THE phone call; the one telling me that the Deep Brain stimulation (DBS) surgery; which would help improve my motor symptoms for a time; was scheduled for two weeks from that day! Some of you know what a miracle this was for me; it’s something that I had to work very hard to prepare myself for so that I would be strong enough to handle such an intense surgery. As far as music goes, in the back of my mind I hoped with all of my heart that this surgery would allow me to sing, play the guitar and piano again; and with those things, just maybe, I would receive the inspiration; which had gone missing; to write music again. It was quite a tall order but I knew to not get my hopes too high.

It’s very interesting how this turned out…

DBS has many pros but it also has side effects unique to each individual. I was blessed to be given back some of the mobility in my hands making it so that I have the ability to play the guitar and piano; but there is a catch; I CAN play, but my hands don’t remember HOW to play. This means that what was once muscle memory, what came as naturally as breathing, has completely disappeared. Also, a common side effect of DBS is changes to the voice. Well;  it did change; but not in the direction that I had hoped for.

I was left with two options; give up and wallow in self pity; or look at the situation in a totally different sort of way….I have chosen option two. Instead of being frustrated and angry, I’ve dug through the ashes and found some embers that are hot and glowing brightly…

How many people get the opportunity to learn how to do their favourite things more than once?!!! I mean, seriously, how cool is that??!!

I get the joy of learning how to sing again; learning how to play the guitar again and learning how to play the piano again. I made the choice to view this as an exciting adventure!! Each step I take on this journey, every bit of progress matters. Each time that I sing or play; even if it doesn’t sound the way I would like it to; my heart becomes warm and I am filled with joy. Yes, MUCH patience is necessary, but if there is one thing I’ve had to learn over the past 6 1/2 years, it’s patience. I love to learn and I get to do it all over again.

Henry Ford said “Anyone who stops learning is old, whether at twenty or eighty. Anyone who keeps learning stays young.” If that’s the case then I guess my brain is 25 again; and you know what? It feels great!

Remember to always Have Courage and To be Kind!

Much love ~ Meg

NEVER SAY NEVER! ~ and fill out your personal directive

By ~ Meg Bernard; small girl with parkinson’s

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Time for a serious talk

I came across this quote the other day while helping my daughter with her homework..

“What you reject today, you could accept tomorrow. And what you accept today, you could reject tomorrow. Never say never unless you can predict the future.”
~Suzy Kassem

Upon reading it, my brain immediately went into ‘chaos mode’ as thoughts and memories came rushing in; like water bursting through a dam; causing me to tread water while I attempted to organize all the information into something that actually made sense. Why had this quote hit me so hard? Why had it triggered so many thoughts and feelings that didn’t seem to be related to each other? I continued to dig and sort; searching for the starting point of the tangent; and finally was able to pinpoint it with two words…Personal Directive.

*Side note* A personal directive is a legal document that allows you to name the person(s) you trust to make decisions on your behalf should you lose mental capacity and list the areas in which they have decision-making authority. In this document you can indicate your own wishes for treatment when it comes to life saving measures and end of life care. Anyone over the age of 18 is encouraged to have one; it should be reviewed and updated regularly.

Let’s go back about 6 years…
I have a tendency toward ‘oddness’ when it comes to all things medical; so at the encouragement of family and doctors I completed a personal directive. I chose a member of my family to be the person with decision-making authority, then went through the pre-designed form, checking off the boxes of things I wanted…like I was ordering off a menu…it was so simple. It should have set off warning sirens in my head that it took me all of 5 minutes to make some of the most important decisions of my life; you don’t get a second chance to rethink things when your heart stops beating. I put the completed directive in an envelope and pretty much forgot about it.

As some of you will be aware, I am the recipient of many miracles. I have recently completed over a year of life that I was told I would never see. I have had a years worth of joy, frustration, pain and indescribable happiness that I understood to be improbable if not impossible. I have had a year of personal growth and renewed understanding of the world around me that is far beyond priceless. It hasn’t been easy; miracles sometimes require great effort on our part; but I’ve survived through things that never in a million years would I have imagined I would face, let alone make it through.

One of those things is Digestive Tract Paralysis caused by Parkinson disease. When the paralysis began I was originally fed through a GJ tube and have now had to progress to intravenous feeding through a central line that goes to my heart. This is how I eat. Without it I will die; yet with it I am still capable of living a beautiful and productive life. I hook myself up to my food (TPN) every day, put the TPN and the pump it requires in a bag over my shoulder, and off I go on my day. Yes, it’s awkward at times being attached by a “leash” to a bag; yes, it can be inconvenient and the pump is noisy and YES! I would love to sit down to a steak dinner with all the sides and then eat a whole cheesecake for dessert; BUT I’M ALIVE and, more important than any of those things, I’m happy.

Parkinson’s disease is an incurable, progressive neurological disorder and I confess that it sucks! I might be putting it mildly by saying that it hurts, I don’t like it, and I don’t want it anymore…yet the whole ‘incurable’ part doesn’t really give me a say. Regardless of any of those points, my life is most definitely still worth living!

(I promise that I’m getting to my point soon)

This past October I had deep brain stimulation surgery which is like having a pacemaker in your brain and it improves (not cures) some of the motor symptoms caused by PD. As it is a very substantial and potentially dangerous operation I was encouraged to review my Personal Directive so that if any emergencies occurred we would be ready. I pulled out the one I had filled out six years ago, brushed the dust off and started to read; as I did so my mouth gradually opened and by the time I had finished reading my jaw was on the floor. I put it down beside me, took a deep breath, and said; out loud, to no one in particular; “I SHOULD BE DEAD!” The thing is, I wasn’t referring to all the life threatening situations I had made it through, I was referring to the fact that, had I followed my own instructions checked off in my personal directive, I should have ALLOWED myself to die years ago.

WHAT?!?! (I know right?!)

I’ll explain…
There were SEVERAL, dare I call them ‘flaws’ and ‘was I drunk when I filled this in???’ moments in my personal directive, but I’m just going to focus on one small portion…

3. If I have an incurable, progressive disease in which life-sustaining treatments have been started and are keeping me alive, I want them stopped. I specifically REFUSE the following life support treatments:
a) Artificial feeding such as G-tube, J-tube or central line intravenous feeding.
d) Artificial hydration by intravenous line.
c) …..

Beside (a) and (b) I found a big ol’ check marks! In permanent marker no less!

I sat there shaking my head; reliving the past few years in my mind. When I filled out that form I couldn’t imagine that living with an incurable, progressive disease; being in almost constant pain, and requiring the need to be fed and watered by tubes could lead to a joyful and productive life!!!

Don’t feed me ✅
Don’t water me ✅

Ladies and gentlemen of the jury, forgive the ignorance of a woman who couldn’t see a person behind the disease, who couldn’t see beauty behind the tubes, and a life beyond the pain; for I live a most beautiful and rewarding life and I wouldn’t trade what I have suffered physically over what I have learned for anything; what could have dragged me down has only enhanced my life.

I have, on numerous occasions, had people say to me “I don’t ever want to be fed by tubes; I don’t want to live in constant pain; I could NEVER do what you do”. From now on when I hear those words I will reply with a quote:

“What you reject today, you could accept tomorrow. And what you accept today, you could reject tomorrow. Never say never unless you can predict the future.”

Have Courage and Be Kind

~Meg

Parkinson Awareness Month 2017 vs. the small girl ~ MASSIVE communication breakdown

~ by Meg Bernard, small girl with parkinson’s

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YOU HAVE GOT TO BE KIDDING ME!

This is how it began…I can still picture it so clearly in my mind…allow me to reminisce…

It was April 1st, 2017, 12:01am…the dragon, who had been lurking in a corner all night, suddenly sprang onto the end of my bed; giggling excitedly 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!

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 ‘most excellent’ plans he had made for HIS month; all of which, of course, included me. Sigh.

He began:

“You know the incredibly vivid and terrifying nightmare you just woke up from?! That was me! Wasn’t it brilliant?! I’m planning an even nastier one for tonight!!” The look in his eyes made me shudder.

“Have you noticed yet that you can’t move your legs?! That’s me too!”

“Are you feeling the awful, all consuming pain running through your whole body? You guessed it! I did that!”

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

“Oh you’re gonna love this one; later today, when you try to stand up, I’m going to make you over balance which will cause you to…wait for it…FALL! It’s reeeeally going to hurt!”

“Then, just wait until you try brushing your teeth (giggle) and; oh my yes; tying your shoes!!!” He cackles “I can’t wait to see the look on your face!!!”

I groan as he pauses to carefully examine the items on his list; he wouldn’t want to miss anything; then I slowly try to shift my body so that I’m facing the right way to get out of bed.

“STOP! WAIT! IT GET’S BETTER!!” He explodes, “as soon as you put your medication; the ones that are supposed to make me behave; into the feeding tube in your abdomen, I’ve carefully planned for severe nausea to overwhelm you, causing massive spasms so that every time you move, during the following 3 hours, you’ll start to vomit up stomach acid…”

He takes a quick breath…

“…which will make it impossible for you to hook your central line up to your TPN (**reminder: I am fed intravenously through a tube in my chest that goes to my heart**) which means your body won’t get fed and you’ll have no energy reserves to battle what I have planned for the rest of the month!!”

“You see, in a few days…I’m not going to ruin the surprise by telling you which day…the bright shiny industrial sized feeding tube (he takes a bow as he speaks; taking credit for that nightmare insertion) that was so ‘brilliantly’ (air quotes) clamped to the wall of your intestines is going to come unattached and coil up in your stomach! It’s going to be so much fun seeing you scramble to get that sorted out!” (This is how I’ve spent my day today)

“THEN, FOR MY GRAND FINALE” he is practically screaming with excitement by this point “YOU’RE GOING TO NEED SURGERY TO FIX THE NEUROSTIMULATOR PORTION OF YOUR DEEP BRAIN STIMULATOR BECAUSE I’M GOING TO TWIST IT AROUND AND AROUND A BUNCH OF TIMES AND THEN LEAVE THE BACK SIDE FACING OUT!!” (that surgery is set for April 24th) He ends with a flourish of his arms and a big “TADA!!”

I stare at him in silence for a full 5 minutes; no sign of emotion on my face; then one at a time I put my hands over my ears, making a statement by blocking out his voice.

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

“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 reluctantly nods his head in agreement. As I continue to try and sit up he throws in his parting shot “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 say. That’s when we made eye contact; I stared him down; and in that moment I’m convinced I saw him shrink a little. Then it hit me; “Dragon” my voice coming out quiet but strong “do your worst because I will NEVER. EVER. GIVE. UP.”

On that note I leave you with a “Happy Parkinson Awareness Month my friends”. Let’s hold our breaths, cross our fingers, and say a prayer that we will come out the victor in this month long battle!! I know that I could never do this without you.

Have Courage and Be Kind.

Much love ~ Meg

small girl with Parkinson’s; warrior princess; slayer of dragons; wolf among sheep; and lover of life!

Keep Your Face to the Sunshine…

By Meg Bernard ~ SGwPDsunflowers

I love sunflowers.
This photo was taken August 15, 2012 in the Loire Valley in France. I saw the field, and insisted on stopping the car; it has always been a dream of mine to get lost in a sea of golden yellow faces…to “be a sunflower” so to speak.

This photo came to mind today when I happened upon my favourite quote by Helen Keller “Keep your face to the sunshine and you cannot see a shadow. It’s what the sunflowers do”.

If you look at the picture carefully you will notice that the sunflowers all face the same direction…toward the sun. This is the direction where they will feels it’s warmth and bask in its light and grow!!

Perhaps, like me, there are shadows surrounding you constantly; I’m not speaking of shadows created by objects, I’m speaking of shadows created by the dark things of the world. These shadows would like us to look down and become so distracted by negative thoughts and our insecurities that we eventually allow them to block out the light. The more time we spend in these shadows the bigger and more important they appear. If we were to only glance at them, acknowledge them briefly, and make just a tiny turn of our heads we would once again be in the sunlight.

I’m choosing to share these thoughts today not only as encouragement those who feel surrounded by shadows, but also as a reminder to myself who, far too often, finds herself in this position. I send out a challenge to us all; turn your head and look toward the sun, see it’s light and feel it’s warmth; allow yourself to grow and feel the shadows that are lurking fall by the wayside.

Be a sunflower.

“Keep your face to the sunshine and you cannot see a shadow. It’s what the sunflowers do” ~Helen Keller

Have Courage and Be Kind.

Much love ~ Meg

 

 

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!

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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