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

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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Are your doctor’s scared of you yet?

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 ~