We all know how the tremor was my most hated symptom of this insidiously insufferable illness that follows me everywhere I go, limiting my movement, turning everything I want so badly to accomplish into, at times, what seems like an insurmountable challenge. That, however, has become a thing of the past, all thanks to a surgical intervention. Dr. Sadikot, the brilliant, kind, and all-around nice guy with a fantastic bedside manner, has reduced that particular symptom of my disease to something a little more manageable. Though not without risk–there was a 2% chance I could bleed out on the operating table–but this was so negligible for me, it never even weighed into my decision to go forward with the surgery.
They cut open my head, installed electrodes in my left thalamus (any professionals reading this, feel free to correct me) to control the tremor in my right side, and I anxiously await the day when we do It all over again to my right thalamus, with the hope that there is as much improvement as I’ve seen on my right side. All things being relative, however, I don’t have as high an expectation for the right thalamus/my left hand; since the disease grasped me with its relentlessly tightening grip, my left hand has been impacted much stronger than my right. I remember, clear as day, my former roommate Jami spending, oh, I don’t know, about two weeks finding blood spatter in the kitchen from the day I was trying to do something as simple as butterfly a sausage, and, unbeknownst to me, I had cut so deep into my left hand that I’m surprised I didn’t leave a scar. Just to give you an idea of how early, after my first relapse, my left hand was so detrimentally deprived of ANY sensation. I could and can handle “large” movements – grasping, clutching, etc. but the fine motor control has been lost since 2007. It has always felt markedly different than any other part of my body that has fallen victim to the MonSter. Maybe permanent axon damage? I have no clue. As I’ve reiterated countless times: I’m no Doctor, just a victim, as are the other 75,000+ Canadians with this illness. And I do believe that number; it is the higher end of the spectrum, but I think it is nevertheless realistic.
So, in time, my head will be cut open once again, electrodes will be installed, and more wires will run down my neck in order to battle the tremor. Why not? I just need to be sure to stay away from cigarettes and anything else I can smoke. Piece of cake!
I want to figure something out for the urinary incontinence, though. It’s my new curse. I am so very tired of waking six times through the night/morning and scrambling to get to the toilet. I suppose I can consider myself “lucky” – I don’t need to cath overnight, nor wear diaper to bed. No, I can still sleep without any sort of incontinence product, be it a cath hooked up to a 1L overnight bag, or a diaper. Lucky… yeah, right. To amend this issue, if they could locate the lesion in my brain that is the cause behind it, I would unequivocally ask for it to be lesioned – you heard it here, folks; I’d let a competent neurosurgeon (no “Dr. Nick’s”!) cut away at the plaque/lesion responsible for this awful symptom. It’s awful because inserting something up my urethra always leads to infection. It’s awful because using external catheters often leads to failure. And it’s awful because I don’t have any inclination to wear diapers for the rest of my life.
So the one Urologist I’ve seen suggested a suprapubic catheter – a line inserted directly into my bladder. One Neurologist I spoke to counseled me away from this idea, but that was, perhaps, not the best idea. I need a second opinion, and I’m praying that the results from the urodynamic assessment that I had done already are still floating around in the MUHC databases somewhere…
I’m tired of falling. I’m tired of losing weight despite eating 3 meals a day. I’m tired of consistently soaking my skivvies. I’m tired of fighting. It’s not much of a life… But it’s the one I’ve been handed. So I’ll keep fighting because it’s what’s expected of me. And that’s what I need to do. But I’m tired. I’m fed up. And I’m an inch away giving in. At least (much to the chagrin of my family) smoking 3 grams a day kept my spirits up. Consequently, it did also make me lazy and unmotivated to do schoolwork.
And I’ve come full-circle. So… Anyone out there know a Urologist? Whose name is NOT Dr. Corcos…