The Sound of Silence ~ with an exciting pd breakthrough mixed into it

By Meg Bernard ~ small girl with parkinson’s

I live in a noisy world and I love it.

I grew up in a household where there were six kids with ages spanning the small gap of only 7 years. There was constant noise and organized chaos. I remember specifically the evenings where my 3 older sisters and I would be getting ready to go out to a dance or some other activity that teenaged girls feel the need to dress up for. The hot water would be gone, we blew fuses from having 4 blow dryers plugged in as well as 4 curling irons. The air had an overwhelming smell; of hairspray and perfume; that was so strong you could practically see it. Then there was the compete blinding loudness created by the music coming from 4 separate ‘boom boxes’. Crazy, noisy and fun.

My childhood was filled with the beautiful noise of music; each one of us taking singing lessons and learning instruments…singing feels like breathing…it filled the air and the soul. My home was also filled with the sound of laughter; my favourite being my mother’s. I remember my brother and I sitting at the table, long after dinner was finished, being silly for the sole purpose of making my mother laugh!!

Then I grew up, got married and had 3 kids in 3 years; pretty much a lateral move on the noise issue; and it was wonderful. Babies crying; little voices calling me mommy…heaven. Now that they are all teenagers the sounds are very different, but I confess to still getting a thrill every time I hear them call me Mom. It’s a magical thing to be a parent; but MAN is it noisy!

I’ve discovered that I struggle now to be in the quiet. I can’t even sleep when it’s quiet; I have to have a movie playing or be listening to a radio program to quiet the constant chaos in my head and distract me from thinking too much. I choose movies that I’ve watched dozens of times so that I won’t be compelled to stay awake to see how it ends.

Unfortunately a different kind of noise entered my world a few years ago; a noise that no one but myself could hear.

One of the ‘joys’ of PD is the effect it has on a person’s digestive system. Just as the disease slows muscles you CAN see, it also slows muscles that you CAN’T see. The digestive symptoms of PD are primarily a result of slowing of the movement of the gut – “peristalsis” is the fancy word. Peristalsis is a series of wave-like muscle contractions that moves food to different processing stations in the digestive tract. The process of peristalsis begins in the esophagus as soon as food is swallowed. It is a much used word in my vocabulary, probably because it’s something that I don’t have anymore.

About 4 years ago my stomach started crying…not a sound that anyone else could hear; it was a sound that could only be heard in my mind and it spoke of great pain, of nausea and exhaustion. Imbedded within it’s tears was a story of great sadness and loss; frustration and sorrow for having failed me. I didn’t realize at the time that my stomach was undergoing the process of becoming paralyzed; it too had been attack by the dreaded dragon Parkinson’s and was losing it’s ability to move and it’s sense of self. I felt it’s sorrow and shared it’s tears. As the searing pain and nausea took over I stopped feeding it as much and both of us suffered. This kind of paralysis is called Gastroparisis.

Gastroparesis (GP) is what the name sounds like; “gastro” refers to one’s stomach and the digestive tract, “paresis” refers to the state of being paralyzed; it is easy to see by breaking this word down how it may greatly impact an individual. In myself, and others with this diagnoses, we experience a sensation that our stomachs are motionless, stagnant, unresponsive. Where as in typical stomachs the muscles are able to push food along, moving the food to the small intestine and onward digesting food in approximately 2 hours; in a stomach with GP the food has trouble moving, and can sit in their stomach for as long as 72 hours, sometimes more. This is not exactly a comfortable experience. It can lead to nutritional deficiencies, nausea and vomiting, and unstable blood sugars.

I was discovering that, within me, the noise created by a typical stomach had ceased to be, and the internal sobbing was growing louder and louder. Shorty after; having spent much time in the hospital being treated for severe malnutrition; I had my very first G-J tube inserted. The G portion of the tube went to my stomach (it is used to aspirate stomach acids) and the J portion of the tube went to the second part of my small intestines (the jejunum); and so, since my intestines were still experiencing peristalsis it was through that tube that I was given the formula I needed to survive.

It wasn’t long after this that another noise came into my world; a new ‘voice’ in my mind; only this one wasn’t crying or explaining, this ‘voice’ was one of constant, tormented screaming; hours upon hours of screaming and pain…it was my intestines. The paralysis had carried on and as peristalsis in the intestines slowed, so did the ability to feed myself through the tube to my intestines. I recall days of only receiving 50 calories of formula because it was all my body would tolerate. I remember feeling the life draining out of me as I went to sleep each night. I soon learned that I had begun the journey of complete Digestive Track Paralysis (DTP).

This is when I had to make a (huge and scary) leap of faith…a central line was inserted into my jugular which ends right beside my heart; I now receive all of the nutrients needed for survival via IV. It has been a miracle; yet the crying and screaming continued.

Over the past few years the noise inside of me has continued to change. The gurgling hunger pains went silent as the sound of tears and screaming increased; I didn’t like that noise or the pain but, in an odd way, I grew accustomed to it and was, in a sense, reassured by it. Then something happened; something terrible, frightened and something I thought to be unimaginable; the voices started to fade…quieter and quieter…until it reached the point where there was barely any sound. I remember clearly the first morning I woke up to complete silence. As a person who is used to a life of constant noise I felt lost, empty and lonely. Most people would be thrilled to lose the ‘voice’ of constant pain; I felt betrayed and abandoned. I couldn’t help but look at my abdomen and cry “why did you leave me?! I tried so hard to help you!” It felt like the death of two friends; two friends who had spent years fighting for my existence and now, they were gone.

This created more problems than just silence; the complete shutdown of peristalsis caused my J tube; which was only being used for the purpose of giving me the, all important, medication to treat the symptoms of my PD, Levodopa; refused to remain in my intestines. It started to, sometimes a few times a week, float up into my stomach where it was not only useless for medication, it wreaked havoc! You’ve never lived until you’re being gagged from the inside by a J-tube stuck in your esophagus. Each time it happened it was an emergency as Levodopa (Sinemet) is only formulated to go through the digestive system; so no IV version; and you can’t go off of Levodopa cold turkey and not suffer dearly, sometimes with loss of life. So, each time, we would rush to the emergency room and they would, as quickly as possible, get things arranged for the, increasingly difficult, procedure necessary to put the tube back where is belonged. It got to a point where the risk of perforation of my intestines grew more severe each time they did; not to mention the trauma my body experienced and the problems with my PD that would result. We needed a new plan…

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…(Pharmacist Amy enters stage right)…

Amy has been my pharmacist for about 10 years now and she knows my health better than anyone but myself. When things got to this point Amy had had enough of watching me suffer and she made it her mission to ‘fix it’. A few months ago Amy, with the assistance of a compound company, created Sinemet suppositories. For all of you out there with PD and digestive problems, no, I’m not joking; we have found a way to administer Levodopa while bypassing almost all of the digestive system. I have waited on announcing this life saving discovery until, after testing it for a few months, I could say with full certainty…IT WORKS!!! Some of you will understand what a miracle this is for me. I have been fighting so long and so hard and this discovery has brought some peace to my heart.

About 5 weeks ago, when my J tube had once again slipped into my stomach; when the noises had ceased, both tears and screaming silenced; they pulled my J tube out for the final time. Afterward as I held the tube in my hands I silently called ‘time of death’ for my dear friends; those inside of me who had worked so hard for so long on my behalf; who bravely faced the Dragon daily and did all they could to succeed but ultimately made the ultimate sacrifice.

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Today, their loss is felt. As many positives as have come out of pulling my tube, it also has had serious negatives; the problems are different but just as extreme and sometimes more frightening because I’m doing it without my ‘team’; without my digestive system; and it’s lonely facing the unknown without their familiar presence. As the saying goes ‘the silence is deafening’.

It may seem crazy to some of you but; since I’m crazy no one should be shocked; I suppose in some ways I’m writing this post as a tribute; a thank you; in recognition of my stomach and intestines; my Pain and my Panic.

In honour of…

Things once taken for granted;

The noises expected,

And the noises gone silent.

I listen for you constantly within ‘the sound of silence’.

God bless Pharmacist Amy. She saved my life.

Much Love Always ~ 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