~ 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