Jumping ship

I have moved my fair share, of this, you can rest assured. For a few years in Calgary, it was an every-six-months kind of thing (my profound thanks to the “Morrismoving Co, Inc.) but now I have found MY home–with Malissa, over in Forrest Hill, a stone’s throw from all the wonderful yuppiness that is incorporated in Westmount.

Wait a minute? Westmount? Malissa? What the heck is going on?

Let’s backup…

My last post was replete with whining about a Urologist, bantering on about a suprapubic catheter that I was weighing having “inserted”, and got everybody excited for my next round of surgery. I am happy to report that I have accomplished NONE of those things.

The Catheter insertion was good to go–and then next thing I know, I’m being asked to report to the Neuro for a 7:30 am start. They warn you in pre-op that you can be called at any time to report for surgery, but it always seems to happen at a time which conflicts with something.

So my my left hand continues to shake like a leaf in the wind, I’m still weighed down by my endless incontinence issues, but somehow, nothing can make the smile on my face fade. That just might be because…

I met someone. This may factor in to my disappearance, but that is no excuse. The writing that I post is my catharthis. There really was nothing in my life that I minded sharing–but what exists between Malissa and yours truly, well, I think that this is something I’d like to keep private. Needless to say, I’m incredibly happy, I have a beautiful girlfriend whose looks are rivaled only by the size of her heart…

And so now best piece of news; we found a beautiful apartment that we plan on moving into post haste! Actually, we took possesion Mar 10 and we’ve been living the life ever since! I’m excited and nervous and happy all at the same time. With apologies to my family for subjecting them to the fun of moving again, but this is is the one with a little more permanence.

So we’ll end here. I’ve been having difficulty blogging on the iPad – touch screen + tremor don’t go well together – pretty sure I’ve written this pot 4 times. No excuse, I’ve had this desire to get this post out. So quick recap:

1) Surgery is on hold until my platelet count rises–did I mention my second neurosurgery was put on hold? I’m just totally “Malissa-centric” lately, forgive me.

2) Met Malissa and she’s totally changed my life!

3) I am really going to redouble my efforts to keep my blog up to date. Just been busy.

Let’s keep it up, yeah?

-A.D.

Suprapubic say what?

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…

Anyone? Bueller…?

– A.D.

What did Confucius say, anyway?

I’m too young to be here. I’m too young to be here. I’m too young to be here.

That’s what’s been resonating in my head for the last week and a half, just about since I arrived at Tango. I am the youngest of the bunch (though my hairline begs to differ); most of the residents are old enough to be a mother, a father, some even a grandparent to me. But as time passes, I’m struck with the realization that it’s not about my age. It’s about my level of the very real disability that I have to rollover, and wake up to every day. I have said before that I need help, I have griped and groaned about the accessible housing situation in Montreal. On top of it all, I have been trying my very best to retain some amount of autonomy, to NOT be a burden (at least a heavy one) on my family – even if they want me to. Countless times, my sisters and my mother have offered to open their doors, and let me stay with them. That is, simply put, not what I want, and no long-term solution. They have their own lives, and they need to live them, just as I need to live mine. And so, after a six-month search, going from building to building, looking at condos that I couldn’t even come close to affording, etc., I have settled. Sort of. It’s a process, most assuredly. I still remember being in Calgary, meeting a girl, hanging out at Prince’s Island Park, and baring my soul to her, telling her that my biggest fear was that I would one day be diagnosed with this insufferable disease. That was 7 or 8 years ago, and it all became reality. So here I sit, in the most accessible apartment I have yet to live in (though not without its own shortcomings, however inconsequential they may be) – and here, my life will carry on. And on. And on…

NDG/Cote-des-Neges, bordering on Cote St-Luc – I’m kind of in the middle of all three boroughs of the city. It’s a great area of Montreal, especially for any with mobility issues at the level that I live day to day. At Tango, the staff are courteous, friendly, and ever-so helpful. Whether it’s three in the afternoon, or three in the morning, there is someone here to assist me. Gone are the days of hitting that “panic button” and having to wait for my poor brother-in-law to come pick me up off the floor, praying to the powers that be that I don’t mess myself while I wait. Even my nephew came to visit; I think he liked the place. All the doors are automated, and the sneaky little bugger loves pushing buttons! He was so excited, almost as much as I was to have him here. He’s for sure the cutest thing on two legs then I’m related to! My only complaint is that I have no kitchen, only a microwave to heat food. I eat three meals a day with the other residents, in the common room downstairs. Anyone who wants can feel free to join -$5 for a plate. I am even allowed to have guests stay with me, provided that I inform the administration beforehand.

I don’t need all the services that they provide. I can still shave myself, I can still mostly get on to the toilet under my own power (I am a fall risk, however), I can still shower on my own, still dress on my own, still handle my own finances, and still work on beating down the MonSter. It will allow me time to focus on my studies (I want my English Masters… So maybe in 10 years!), time to focus on the support group that I run with Tristan and Jennifer (it really was their brainchild, I just signed a piece of paper and magically became the VP). He really is the most inspirational human being I have ever met. Lance Armstrong’s got nothing on him!

For everything I’ve lost moving here, I have regained elsewhere. I just have to keep that in mind. But it never hurts to be reminded. And reminded I am, every time one of the staff does something for me, whether it’s picking me up, helping me down, serving me breakfast/lunch/dinner – I just need to remain cognizant of the immeasurable service they provide.

If you enjoy the warm weather, you’re in luck. If you’re like me and detest it with rigorous vehemence – the apex of summer has come and gone, let’s all hope for cooler weather from here on out.

-A.D.

The Ugly Post with the Important Message

Today I learned a new word. Suprapubic.

If reading about this particular symptom of my disease (that being urinary incontinence) leaves a foul taste in your mouth, then, by all means, wait until the next post. But this one is going out there because writing into  this vast expanse, this great void known as the Internet, sometimes helps me to organize my thoughts. Occasionally, I’m lucky enough to have other people weigh in and provide their opinion; I value that more than most would imagine. I don’t expect medical professionals to be reading my blogs and providing me with solid medical advice. But just getting someone else’s take on what I’m going through is sometimes more useful than a doctors appointment that I waited six months for.

On point: urinary incontinence. It’s despicable. The frustration it causes is equaled only by the tremor which prevents me from doing so many things. In this respect, the incontinence is not much different; I am unable to leave my house without an extra condom-catheter (my current preferred means of catheterization is by using what is referred to as a “male external catheter,” (or MEC for short), an extra extension tube, an extra leg bag, as well as a complete change of clothes – socks, boxers, pants, and a T-shirt just in case; one never knows exactly how messy one catheter dysfunction from the next will be. When I say my “preferred means” what I should really be saying is “ONLY means.” The tremor makes it impossible for me to catheter internally (that would be directly into my urethra, the image on the left in the link above), on top of which, I am very susceptible to infection, as I’ve only ever cathetered this way once, and the next day I was close to having a full-blown relapse due to the inevitable urinary tract infection which set in almost immediately. It was done in the most sterile of environments: a hospital, by professionals. Still, the resulting infection was something that, if I can, I would like to avoid ever experiencing again. So this suprapubic catheter provides a third option. After having had my urologist explain to me, in brief, how the procedure to insert it would be performed, I’ve become very aware of my pubic bone (we all have one, between our bellybutton and our’junk’). This (suprapubic) catheter would be inserted just above the pubic bone. From there, I’m given the choice of whether I want to attach a leg bag, or insert some kind of blockage device which would plug the catheter. When I feel I have to go, I simply unplug, drain into a urinal (a plastic, graduated container, also part of my “just-in-case” gear that I carry around in my backpack) and do what you would normally do with your urine, and flesh it down a toilet.

Of course, the whole thing is not without risk of further infection. What little research I’ve been able to do has led me to read that it is of tantamount importance to keep the catheter site clean. That it requires frequent flushing with a saline solution, somewhere in the neighborhood of 60 cc by syringe. Leads me to question whether I’d be able to perform this task as well, given the unpredictability of my tremor from one day to the next. Oy.

I use this blog to organize my thoughts, to gripe, to whine, bitch, and to moan, but it always ends the same way… With me saying “I’ll figure it out, I always do.”

Multiple sclerosis. It’s been the bane of my existence since age 2, when my poor father was diagnosed. That was almost 30 years ago, and it has not let up for an instant. And I am but one of the 75,000-odd Canadians caught under the crushing weight of this disease. Having said that… It’s that time of year again folks!

Once again, my family and I will be doing the “MS Walk of Hope” and so I am, as I do every year at this time, soliciting donations for the MS society of Canada. Whether a cure will be found in my lifetime remains to be seen, but one thing I know for sure is that we will never grow closer without the support that I typically receive from my friends, family, and the like every year. This blog has become (dare I say) inspirational to many; the fact that I am able to discuss my disease with little to no restriction, so candidly and openly, may help somebody, anybody, and that is why I continue to write. On its most visited day, this blog has seen 488 visitors. This was likely due to its address being published in the Globe and Mail in article I was cited in discussing my experiences in Costa Rica getting “Zambonied,” or having CCSVI surgery, if you so prefer. Still, I have 111 loyal followers, and to every one who reads everything it is that I write, who listens to my griping, my groaning, and my whining, I have nothing but words of thanks. I’m not asking for money for me; I’m asking for money on behalf of the 75,000 Canadians suffering from this disease. If you feel so inclined, follow the link below, and please make a donation. No amount is too small, and conversely, no amount is too large either!

http://bit.ly/xXaJRV

MS has taken much from me, potentially even more from my family – as the one suffering from the disease, I gain first-hand experience about what it is that life under the exhausting weight of the disease is like. My family and friends are innocent bystanders, unable to do much, aside from keeping my spirits high (which they excel at, I must say). I know I ask every year, but I ask for reason; I want nothing more than to see this disease become a thing of the past, to see a future free of MS and its crippling effects on people and families. So please give. I implore you.

Yours in health,

-A.D.

A Conversation Worth Having

And so it goes… it started with a moderately benign question, then turned to yet another outpouring of my heart onto paper, or buttons to the screen on my Blackberry, as it were.

How do you stay positive dude? I keep getting more and more bad news, I don’t know how to deal anymore I can’t even be happy for others…

I suppose that’s a difficult question for anyone to answer. Anyone, that is, except for me. I know precisely how I remain positive, why despite being confined to (though never defined by) my wheelchair, I never lose the smile on my face, even though I recently got into an argument with my floor, and wouldn’t you know it, the floor won. In the words of Katt Williams (I warn you now, this is not safe for work and contains explicit language, but is entertaining no less), “life is short. You’ve got to take care of your star player!”

I am the writer, director, and producer of my adult life. I am my own star player. So to answer the question, I laid out why, shedding a few tears along the way. As if effortlessly, the realization became clear to me: honestly, I do it for my family. I have no intent on giving up. That’s the cowards way out – and ‘Momma didn’t raise no cowards…’

I love my nephew so much. He is the newest addition to my life, and I am doing everything in my power to be there for him. I want to be around when he scores his first goal. I want to be there when he graduates from school. I want to be the best “Uncle Andy” that I can be; he deserves no less. And he’s just part of the equation. I have people who keep me going – Rachel, Julia, Joanna, my Mother, my Grandmother, my Aunts & Uncles, Oli, Matthew, Mark, and baby Gabriel. MS took my Dad from me, from my whole family really; I wouldn’t dream of letting it take ME too. So I fight. Everyday, no matter what. I fight for THEM. This is a beautifully fabricated perpetual motion machine – they tell me how much I inspire them, which in turn inspires me to keep doing whatever it is I do.

Some things need to be shared. This is one of them. I guess I’ll have to come up with something original to put in everyone’s Christmas cards this year, as this diatribe is going to get eaten up, no doubt.

Remember to chase what’s important. It’s that simple.

-A.D.

Life Free From Straws

To cut, or not to cut. That is the question. Whether ’tis nobler to leave my brain intact and as is, or to suffer the potential slings and arrows that may come with neurosurgery.

Enough paraphrasing; Shakespeare did it better anyway. I don’t know what to do. I have a follow up appointment on Monday with Dr. Sadikot, a neurosurgeon with whom I opened discussions concerning deep brain stimulation (DBS). For anyone who missed it you can read about it here, but the long and short of it is simple. They install pacemaker-like device in my back, near my shoulder blade. From this device, an electrode runs into my cerebellum. My cerebellum; a part of my brain that plays a heavy hand in motor control, as well as some cognitive functions. I have a sneaking suspicion that major portions of my personality reside therein as well. According to an arguably reliable source, DBS comes complete with potential side effects – “Reports in the literature describe the possibility of apathy, hallucinations, compulsive gambling, hypersexuality  (this one might not be so bad), cognitive dysfunction, and depression.” I’m citing this from Wikipedia, so who knows. But, the Wikipedia article actually cited a credible source when making these remarks (Burn D, Troster A (2004). “Neuropsychiatric Complications of Medical and Surgical Therapies for Parkinson’s Disease”. Journal of Geriatric Psychiatry and Neurology 17 (3): 172–180. ). Though I am neither a geriatric nor a Parkinson’s patient, I see no reason why the side effects wouldn’t apply to me as well. All these are questions for my neurosurgeon.

He did have me go in for preadmission, where I was given a strange device that looks like it’s meant to measure my lung capacity (pictured here) as well as a bottle of DEXIDEN 4 DETERGENT, a detersive skin cleanser (though it looks as if it would be related to or have the same root as the word ‘detergent’, even I had to look up the definition of this one; it means having cleansing power). I was given a list of instructions to follow for the day of my surgery (it basically says to wash myself from head to toe with that fancy pants DEXIDEN 4 cleanser). But I don’t know… particularly after reading that “…because the brain can shift slightly during surgery, there is the possibility that the electrodes can become displaced or dislodged. This may cause more profound complications such as personality changes…

I can deal with puking from chemo. I can deal with it cutting a week out of my month while I recuperate. But I’ve spent 28 years getting to know the person I am, through my ups and downs, and at the end of the day, I kind of like him. I’ve been most recently referred to as “trustworthy” by a close friend (I have it in writing, so there’s no taking that back, my dear!). It took me a long time, but I think I stopped being an asshole somewhere around my diagnosis, circa 2007. Just how much do I love myself? Would I be willing to let the person I am be altered for a life free of the cerebellar tremor? The most crippling symptom… the one that prevents me from being able to cook or eat a bowl of soup, the one that makes it nearly impossible to shave with a manual razor (I pull this one off by holding the razor in my right hand and holding my right forearm with my left hand – I cut myself far less often than you would imagine, but shaving has gone from a 5 to 10 minute thing into a 20 to 30 minute thing). Everything I drink is done with a straw, be it hot coffee, my favourite wine(s), or the glass of Goose on the rocks that I miss being able to hold steady in my hand. It’s the one symptom that I can’t disguise. The one that makes me look truly handicapped, in my opinion, even more than the wheelchair. The chair is something I perceive as nothing more than a tool to help me get from point A to point B, no different than a bicycle or a pair of rollerblades. I can’t count the number of people who giggle when I say “I had my winter tires put on” and then proceed to say that they should do the same on their vehicle.

I’m moaning. But I know. I know that I would do anything, anything at all to eradicate this symptom, regardless of the side effects. Amazing how desperation can be such a strong motivator…

So cut away, I say. Cut away…

I’ll do my best to keep everyone appraised of the dates for the surgery as they become available, though it’s sure not to be tomorrow. My understanding is that I need to have been out of chemo for at least one to two months prior to undergoing any surgical procedure. If nothing else, it puts a hold on the chemo. The eternal optimist in me always has to find that stupid silver lining.

Hopefully, that part will never disappear.

-A.D.

Autumn! Yes!

Yes, Ruth, I’m still alive!

Again, some time since my last post. I think I’ve been lacking inspiration. Or I want to write a book, making me wonder why I continue to give it away for free – this is the lousiest of excuses, as anyone who knows me would easily conclude that I have enough to say  to ‘simul-blog’ while  preparing a manuscript. The #1 reason though, and I can say it with some certainty, is that I’ve been on summer vacation. Like, days of yore summer vacation. It’s been nice. I’ve been enjoying myself. I was able to attend 2 weddings of good friends of mine, friends I have known since I was 13. I’ve caught up with so many people that time invariably separated me from; more reason to see little ‘blips’ of just how good my life is. Despite my MS and its complications, I continue to draw on the strength of those around me. I continue to find enjoyment in simple things. I continue to live my life, everyday.

So what’s new? A precariously dangerous process that happens to so many undergoing a treatment as aggressive as chemotherapy is afoot; serious weight loss. Coupled with the severity of my tremor and the weakness and ataxia in my core muscles, not only am I not eating (well), but meal preparation has become a chore I can no longer perform adequately. I am, of course, working to find a solution to this problem, one that won’t put any undue ‘labour’ in the hands of the people I love – my mother, my grandmother, my brother-in-law, my sisters, et al.

I’ve got to make a phone call on Monday for pre-op screening at the Montreal Neurological Hospital (MNH), per Dr. Sadikot, the neurosurgeon I had met with to discuss “Deep-Brain Stimulation” (DBS). I’m a wee-bit confused, as my understanding of where we left that whole idea was stonewalled – DBS and chemotherapy are kind of like oil and water, and I would need ‘normal’ hematological results, for my leukocytes and erythrocytes to be within a certain range. Still, I will call Monday and get it sorted.

“The Road to You” MS group I have been attending continues to be the most interesting Wednesday I have every month. I’d like to be taking a more active role in the group, and while Tristan, the group’s co-founding member, recognizes my desire to step it up, neither of us have come up with a direction in which to deploy me. I have faith we’ll find something suitable for me.

The interesting thing about regular attendance to the group has been the renewed zeal I have to continue fighting my ‘Everyday Battles’. It’s not nice to see anyone have to struggle with a disease as potentially crippling as MS; it’s a disease that does as much damage psychologically as it does physically. Because it *might* really mess you up. Or not. And it’s being physically crippled that messes with your psyche. This vicious circle funnels downward like water down a drain, but knowing I’m not alone makes for still waters, so to speak. That camaraderie burgeoning amongst  the group members is nice to see. I look forward to both continuing to take part and seeing my role within expand.

Weather’s turning – it’s my time to shine! Autumn has always been my favourite time of year. It is remarkably beautiful in both the urban landscape of the city and the unspoiled landscape of the Laurentians.

Enjoy the ‘comfortable’ weather!

-A.D.