Non-Standard

This Blog post began upon true contemplation of a question asked to me by my personal and professional mentor. The question was thus put to me: “Are you where God wants you to be?” This was at 17:45 on 15-November, 2013. It is only now, at 13:21 on the following day, a full 20 hours later, that I am ready to hit “Send”.  My friend, Derek, always told me: “Good things take time.” 1,600-odd words, 5 coffees (the last of which I’m currently sipping at gently) and 2 teas later I have arrived at my conclusion. My typical reaction when people begin a discourse about god is almost autonomous–my eyes begin to roll as I take a deep breath whose long exhale is paired with a sigh that stretches its length and I…immediately…begin..to…digress. This man deserves more than that. His experiences as a refugee from Zimbabwe are tied inexplicably to my illness (though it makes sense to us.) It has allowed him to truly understand a definition of things like isolation and abandonment, and the brilliant thing about this more-worldly-than-me individual is that he is from somewhere different. He is from a different continent. His skin colour is different. His manner of thought and the way in which he conducts business is different (there is a former employee of Parker who once told him: “anything you don’t know, we can teach you, but what you already know, we cannot.” The uncanny way he holds my head up and pulls my eyelids open so that I can see is different, albeit well suited to me, given my oft disdainful air for authority. Adroitly, the way in which Parker chose to deal with him is somewhat different. Fasten in y’all (hey, I’m just another poser Alberta boy by way of Calgary) and follow me through this incredibly introspective post, if you will. Tears, many due to sadness, more due to the overwhelming joy and satisfaction which begins to rise in me each time I draw some kind of seemingly enlightened conclusion (e.g.: “I Hate it When I Badtrip”) may follow. SFW, I will still call this 14A, as it may have an undesired effect on some. So Reader discretion advised.

Hi Bernard,

The attached image is what Quentin has and likely always will refer to it as “Power Saving Mode”. This is something which occurs daily. At noon. Probably at 2:00 PM also. 4:00 PM for posterity.

I perfected this art in my high school days (1995-2000). I was a silly, angry teenager who had a lack of respect for the way some individual projected their authority. If I even went to class, there was a high likelihood that I was not really paying attention. It worked for me. This manner of thinking came about because I’ve always been exceptional (full credit to both my Father (who embraced my love of all things tech) and my Mother (who more or less did everything else, from the very first story I wrote to my continued improvement in any and all academics.  She has always been there to steer me the right way. This spilled into my professional life; too, in the way I am so easily able to conduct myself properly when I am in a group of non-peers. And the thing that she has perfected is how to best frame things for me, and then allowing me to accomplish them myself (kinda feel like a stompy child (♥ you, Jo!) as I wrote that now.) But my experiences say I was sort of on the right-ish track; within the first month of the second grade, my instructor handed me the final exam for that year. I scored a 90% (notwithstanding, I am an October baby and I was right around the cut-off date—the effect of this was that I went from being the biggest, fastest, and strongest kid on the playground to being the smallest, weakest, and slowest. Malcolm Gladwell muses over exactly that in his book “Outliers”. I still remember my first day of grade 3, and being forced to catch up because I was previously occupied with grade 2. My schoolmate, Catherine, attempted to teach me cursive.  I got my first pair of glasses that same year. Thus, skipping a grade+glasses+honour roll student (until grade 9)=geek. It’s ok, I OWN my geekdom. The cherry on top? I was the only boy—I grew up with 3 sisters (2 older, one younger), an infirmed father (though unbeknownst to me in my youth, and truly until I fell victim to a disease by the very same name, though that is where virtually any similarities in our respective illness ends—and a mother who was forced to do it all.

 I’m not going to sugarcoat it: my MS has left me weathered. It has at the same time, regardless, taught me so much; you really can only truly get it if you suffer from it (sorry? You’d rather not know.). I have come to a few conclusions in this wizened, jaded state in which I exist:

The pathogenesis of my MS is different than that of my Father’s.

My disease progression is different than that of my Father’s.

My familial and financial situation is different than that of my Father’s.

My professional life is different than that of my Father’s.

My relative job security is different than that of my Father’s.

I’m starting to get the feeling that I am unique!

Fittingly the answer to that question must therefore be no, I am not where God wants me to be. Upon full contemplation, if he is in fact creator of all things, he made me unique. He made me different. I’ve always known this. Mom has always embraced this. Listening to everyone all the time is wearisome to a level incomprehensible to most (you can rest assured people always know either what is best for me or for best for my MS—when all the things I really need are things such as a hot meal, or someone to spend some time with me). I read Chicken Little at a young age (another testament to my Mother—she fostered both a will and a desire to read as well as write—and as it is with all things in under her tutelage, I ran with it…like the wind.) But such intangibles are so easily overlooked, though—and the real bit*h of it all is how impossible it is to elucidate others, in part because I vociferously refuse to walk around under a storm cloud. A further testament to my Mother—this Blog exists in large part because of her (though separate from the Catalyst, she is the metaphorical god-darned pit crew, keeping my fuel tank full, my Car clean and rightly oriented, even taking the lead when necessary and allowing me to drift behind her (sorry about all the #Nascar jargon, but it, like all things, is enjoyable in the right company.))

Those differences between my Father and I are inarguable, as inarguable as decisions based on emotion. I know this because I live it every day. For the rest of my time on this wonderful, hazard-ridden, beautiful, gorgeous, ugly nasty Earth (thanks KW!)

I feel a storm cloud beginning to form. Darn you, Mr. Patel. This is something you enjoy doing to me: you ask a question to which I already know the answer, and watch me bounce around like a rubber ball. Because you command my respect, and there is no lesson which goes unlearned, I owe you as much as to be pensive and really think about your interrogative, and eventually I figure out that you expect and want more  from me—because you know me, sir. You got a slate which was half blank in me. I’d say we did alright.

-Andrew

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Insanity vs. Inanity

This is just ludicrous. I didn’t even realize the amount of stuff I was polluting my body with. I worked so hard to remain as objective as possible through–everything–that I stopped caring about being poked and prodded and just started to think of my body as a (broken) machine and was a compliant patient. Through it all. Now I find myself no longer beholden to Big Pharma. For now; the truth is, at the moment, there is nothing to modify the natural course of this disease. My disease. Realistically, I will likely need to resume treatment. But not tomorrow… Insanity meets inanity in this post!

 

I would like for all to know that while my information is accurate, I am in no way a medical professional. Further, MS as it was just covered is specific to me—we all have our own unique biochemical footprint.

My name is Andrew Durso, I am 30 years old. In 2007, I was diagnosed with a chronic, lifelong illness—Multiple Sclerosis (MS). I was counseled by my Neurologist to choose between 4 medications— Copaxone, Rebif, Avonex, and Betaseron (the only available first-options at the time, known as the C.R.A.B. drugs). What did I know of such things? My decision was thus based entirely on the method of administration and my relative comfort level with injecting myself. Thus, my options became: a subcutaneous injection (known as ‘SQ’, frequently referred to as ‘Sub-Q’, or under the skin) every day (Copaxone), a different Sub-Q injection 3 times a week,  an intramuscular (IM) injection once a week (Avonex), or a a subcutaneous (SQ) injection every other day (Betaseron).

I settled on Rebif. My disease progressed quickly. Within 8 months of my diagnosis, I was confined to a wheelchair. Six treatments and two surgeries later, the most incredible thing happened to me.

As of March 1, 2013, I have not consumed a single pharmaceutical product. I have instead been medicating exclusively with Medical Cannabis. I purchased a battery operated, portable vaporizer to facilitate consumption. I asked for and received a medical exemption to purchase, carry, and possess marijuana.

Please understand–I have a great job. I have an amazing family. I thought my days with pot were behind me. But this is no longer high school. It is a FACT that I am enjoying good health right now. Understand: I don’t want to get high. I’m sick and need to medicate.

I now consume Medical Cannabis for all that stuff that I was taking those 20 pills a day for. And, for me, it works.

 

 

Medcation History:

Prescribed:

-Baclofen – 10 mg tablrets 4 times daily (to control spasms, medical cannabis achieves the same effect)

-=Clonazepamn – 0.5mg pill 2 times daily (for tremor control – medical cannabis achieves the same effect)

Detrol L.A. – 4 mg capsule 2 times daily (to calm my overactive bladder muscles – medical cannabis achieves the same effect)

Treatments:

Rebif – 44mcg injected 3 times weekly (interferon 1a)

Tysabri – infused in a infusion centre. Dosage is based on weight, every 4 weeks

Mitoxantrone – chemotherapy1 agent used primarily to treat leukemia, 1.5L infused at hospital every 4 weeks.

Cyclophosphamide – chemotherapy1 agent used to treat various Cancers, 1.25 infused every 4 weeks for 3 years with future regimen of ever 8 weeks.

-Current intent is to resume Tysabri.

Surgeries:

-CCSVI venoplasty

-Open brain surgery and installation of Neurostimulator for tremor control

Over-the-counter (OTC):

3.1,000 IU Vitamin D twice daily

4.350 mg of Calcium Citrate or 500 mg of Calcium Carbonate twice daily

7.1 horse-pill sized multivitamin

8.Omega-3-6-9 capsules (containing 400 mg of EPA and 200 mg of DHA thrice daily

 

1                   Chemotherapy always indicated or use with steroids (1L of Solu-Medrol delivered via infusion and unknown quantity of Zofran (anti-nausea drug delivered via infusion.

Andrew Durso
Vice President
Tristan Williams MS Foundation (TWMSF)

Resources:

Neurology-2003-Goodin-1, obtained from http://www.neurology.org/content/61/10/1332.full.pdf‎
MS Society of Canada_ available at http://www.mssoiety.ca

 

 

 

 

 

 

 

 

The Panel

Something more universal; anybody, with or without MS, may be able to relate. It starts for me with my own personal MonSter. It is the cause behind much grief. It is equally cause for much celebration—it’s simply question of perspective. Grief, however, for the implied reason–I have a neurological disease. I’ve got a problem you can liken to electrical wiring. The wires in THE PANEL (my brain) are no longer properly insulated (the insolation around nerve is done by this wonderful, self-replicating fatty substance known as myelin).

The result is THE PANEL (my brain), with DAMAGED INSULATION (myelin), is trying to complete a circuit that that is missing a crucial link, and is thus doomed to fail. Improper INSULATION (myelin) to the wiring in THE PANEL (my brain) hinders not only the dispatching (COMING) but also the reply (GOING) of any piece of data processed by your PANEL (your brain). And the time it takes to squirt an ELECTRICAL SIGNAL (synapse) through that gooey, slimy layer of INSULATION (myelin) to the right part of THE PANEL (my brain) is referred to as latency. Improper INSULATION (myelin) becomes a MonStrous fire hazard.  I’ve  sauntered out alive each and every time, but only after I blow more taxpayer dollars by calling the FIRE DEPARTMENT (corticosteroids—while I personally respond extremely well to and do not suffer any of the side-effects associated  with turning your adrenal glands on overdrive via some external mechanism, in this case medications known as Solu-Medrol (delivered intravenously) or Prednisone, its tablet counterpart—dispensed in quantities of 5 mg  as well as 50 mg—for those times the FIRE DEPARTMENT (corticosteroids) needs to be called in to save the day.

 

Because of this disruption to my neural network by this stupid, fatty substance known as myelin, I had to call the stupid FIRE DEPARTMENT (corticosteroids–I have them on speed dial).  and only once I’m EVACUATED (remission), am I able to assess the damage. There’s no telling HOW MANY (Multiple) SCARS (Scleroses, or Sclerosis when pertaining to MS) will be left behind. The most amazing bio-electrical machine is your body; it’s neither finicky nor selective like the Marines and has no problem leaving a man behind. THE  PANEL (my brain) quickly assesses and notes any discontinuities, overwriting or rerouting the original, projected path and making necessary amendments what is the greatest ally you will ever have, your brain. As with most naturally occurring phenomenon, it takes the path of least resistance. Your PANEL (brain) and mine are wired the exact same. The cause of my problem is that disruption of the WIRING (synapses) to MY PANEL (my brain). Once THE FIREMEN (Corticosteroids) are finished extinguishing the blaze, I normally emerge from the FIREunscathed. But there is no telling what may be damaged or lost:

“Higher early relapse frequencies (FIRES) and shorter first inter-attack intervals (a great deal of FIRE, back-to-back and in need of an endless string of FIREMEN) herald more rapid deterioration via interaction with the neurodegeneration (I don’t like using the word, but it is the ultimate effect–death; while many links in this stupendous bio-electric machine can regenerate, that silly fatty tissue around my nerve endings, once victim to a stray burst from that improperly INSULATED (myelin) PANEL (my brain) is left unable to regenerate tissue which was BADLY SCARRED (Sclerosis). There are a number of ongoing studies investigating myelin and the mechanism your body uses—my limited understanding is that it has something to do with oligodendrocytes–innately, with neither your attentiveness nor your focus, to regenerate that hooey-gooey, slimy, INSULATION (myelin) around your PANEL (brain) and EVERY CONNECTION (this is represented in everything you do) in your HOME (your body).

And that’s what I need to submit to The Gazette or start going to Elementary Schools and tell the kids this pretty neat story about Electric Panels, Firemen, and how they saved me. More than once…

————————————————————————————————————————————And now here’s something you’ll really dislike:

The above was a perceptive post; it is bibliographical recount of the experiences I’ve undergone since my diagnosis with relapsing, remitting Multiple Sclerosis (MS) in May 2007. I would like for all to know that while my information is accurate, I am in no way a medical professional. Further, MS as it was just covered is specific to me—we all have our own unique PANEL (brain).l.

Do not take this medication if you:

–          are allergic to prednisone or any ingredients of this medication

–          have an internal fungal infection

–          will be given a live virus vaccine (e.g., measles, mumps, rubella, yellow fever,  BCG)and are taking large immunosuppressive doses of prednisone

The side effects listed below are not experienced by everyone who takes this medication. If you are concerned about side effects, discuss the risks and benefits of this medication with your doctor. Side-effects may include:

–          acne (was on Minocyclin at the time, so no adverse reaction)

–          diarrhea (for me, this is kind-of an unfortunately messy good thing)

–          constipation (this is a reality I deal with by doing something as simple as simple as eating 2-3 prunes a day, maybe pair it with a daily softener which has no detrimental long term effects)

–          increased appetite (I can more than use the extra calories. Remember, I was dignosed May 1st 2007, I was in a wheelchair by January 2010.  The first 32 months with my MonSter was just relapse, after relapse. After relapse! Steroids brought me back, from what I felt, but I suppose I’ll never know if all those tablets of prednisone (25 x 50 mg, 1,250 mg, or 1.25 GRAMS every other day for 10 days- This went for a month. During the 4 weeks my cortisol levels were unnaturally high, much like myself, they gave me the capacity, determination, and plain old-fashioned grit where:

  1. I was able to work full time
  2. I was still able to shower and shave autonomously
  3. I was able to lug my laundry down a flight of stairs and able to fold and sort everything in a typical, neurotic Durso-Gabriel way
  4. I was euphorically happy (that is a side effect the NHS neglected to mention—Euphoria. It can kind-of crack you out. It’s kind of like busting a HUGE rail. The nice part is that during my love affair with Prednisone, Doctors at that juncture prescribed a taper dose. This lessened the shock to my system—as the artificial Cortisol clears my system, my adrenal glandsfire back up and maintain my body’s cortisol level. This is no longer in practice thanks, in part, to crack heads like me…

–          increased sweating (n/a to me, may have been a secondary effect of the Minocyclin)

–          menstrual problems (n/a)

–          nausea (no, no—nothing short of chemotherapy does that to me)

–          reddish-purple lines on arms, face, groin, legs, or trunk (nobody has ever said anything)

–          thin, shiny skin (again, n/a)

–          trouble sleeping (it’s called Temazepam)

–          unusual increase in hair growth (it’s as good as gone on my dome!)

–          premature bone decalcification (this is the big fat ugly issue with artificially enhancing your adrenal functioning. I have spoken about this time and time again. No doctor would ever agree to my continued usage. It’s this wicked-amazing pill that eliminates a broad majority of my MS-related symptoms. I can supplement with all the vitamin D and Calcium I’d like, but I have been told by Mark Freidman himself: “They will kill you.”

 

This was a warning I took to heart. I have been undergoing my own personal trial of sorts. I felt I was just shoving pill after pill down my gizzard. They do not cost me anything thanks to ol’ Parker, so I was never reluctant to take them. Every day, I was taking:

  1. Detrol LA twice daily
  2. Minocyclin twice daily
  3. 1,000 IU Vitamin D twice daily
  4. 350 mg of Calcium Citrate or 500 mg of Calcium Carbonate twice daily
  5. 1 mg Clonazepam twice daily
  6. 10 mg of Baclofen 4 times daily
  7. 1 horse-pill sized multivitamin
  8. Omega-3-6-9 capsules (containing 400 mg of EPA and 200 mg of DHA thrice daily
  9. I was taking 5 mg of folic acid twice daily due to an unusually low platelet count, which was my first WIN since beginning this experiment; it rose to a respectable 166 in my last complete-blood-count (CBC), well within the tolerance level for a second open brain surgery.
  10. 5 mg of Cialis daily while Malissa and I were dating—I discontinued it when I began this experiment, and will now never know whether this played into my fluctuating platelet count

 

Since March 1st, 20113, I have not consumed any pharmaceuticals beyond #7. I have instead asked for and received a medical exemption to purchase, carry, and possess marijuana. Look, I have a great job. I have an amazing family. I thought my days with pot were behind me. But I now consume it primarily for all that stuff that I was taking those 20 pills a day for. And, for me, it works. I invested in a portable vapourizer, which is a clean way to smoke.

Gimme a break, it’s not like “I was ripping the shit like it’s my motherf*cking last hit.” I invested in a portable vaporizer and this is the way I now medicate.

 

-A.D.

 

Resources:

 

http://www.urbandictionary.com/define.php?term=Bust%20a%20rail

http://www.canadianvitaminshop.com/

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2892939/

 

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.