It

I have been poked–keep in mind this is not a Facebook activity. For me, nothing beyond photos and videos of the family, my blog, the occasional (arguably) comedic status update, and keeping in touch with people I used to know. This is something, as it is with many others, which I enjoy. I believe that if you are going to think of a person as a friend there is the smallest, easiest, and most pleasant task that you must undertake—you must communicate with them.) It is not unusual for me to throw a quick hello to my friend, Angela (Angie) in Verona, my friend Luisa in Sao Paulo (now a vascular surgeon, if you can believe that!!) So keeping people in my life is very important to me. Why did you ever become friends?

On point, I have been poked. I have been prodded. I have turned my body into my own “Lake Springfield.” (no three eyed fish yet, thankfully).. I have been through 3 years of monthly chemotherapy, 2 surgeries (venoplasty in Costa Rica and an extremely invasive neurosurgery which took 12 hours over 2 days to perform and which I am just coming out of recovery from…), but still—it’s still there, jammed right where you think—that stick up my ass. While traditionally keep in touch with people that I have known, I suppose, upon further reflection that I equally loathe having to interact with those are not already stored under familiar/recognizable/safe to me. From birth I have maintained this nonsensical flat out refusal (I am really stretching back here) to interact socially (and professionally. And academically. And athletically. And romantically.) I will give you an example: my elder cousin was once a Camp Leader at Beavers. I still remember the extreme discomfort I felt the entire time I was away. The intent was likely to encourage me to begin thinking that “Scouts meet new friends, learn cooperation and teamwork and develop self-confidence”. It may accomplish that for some . I was never good at relaxing and letting my guard down. Entrenched I remained until two things occurred to which, contrary to what I thought, I had a positive reaction—my MS and the torrent of writing that was then unleashed. My MS because it forced me to stop being the twitchy, caffeine-addled, nicotine addict (I’m a smoker. I have been since I was 14.) Workaholic loner who wasn’t so great in  the aforementioned areas of my life.

Socially, I needed a proper lubricant for anything in this realm that I have ever achieved.

I prefer beer, but Goose will always. Glenfiddich would suffice in its stead.  That’s kind of what I should stick to.-  Rye turns me into a serious asshole, tequila and I got into a fight when I was 14 (it won) and have not made up.  I’m not a real drinker—so I stick to what I know wonderfully advertised overpriced branding and all.  Left to my own devices pre-MS, I  simply chose to fly below the radar as much as possible

Academically because I just didn’t want to play. I was an honour-roll student in my elementary school days, then grade 9 happened. I began smoking Pot, having the odd drink, smoking cigarettes, and being an insufferable human being known as a teenager. I preferred not going to class over going. As a result of this, my grades suffered. I nonetheless I obtained my (IBMY) High school Diploma. My application to the ridiculous institution of Cégep was met with a letter of refusal. By the Department of Computer Science (Captain Hindsight strikes anew!). My high-school History Professor always maintained that the only thing you need to walk out of High School with are the abilities to read and write. But High School in Quebec does not teach you to write properly. I guess that is what Cégep is for, but can’t Grade 12 get us there more quickly? The inanity of it made me want to pursue my education elsewhere.

Athletically because I’m just not so inclined. I was never a spectacular team player—my Father had to literally throw me onto the basketball court when I was 10. I did alright, but meh. Same with soccer and baseball, These things failed to captivate me. I began to grow more allured by screwing around than

Professionally is the least problematic of that list for me, but again, I stick to what I know. Parker scooped me up and essentially sponsored me. Parker has always been somewhat patriarchal to me. We continue to enjoy a symbiotic relationship to this very day.

Romantically because of that same stick shoved in that same place I mentioned earlier.

Despite the copious amounts of medication I have either been prescribed or elected to take OTC, that cursed stick there remains. I guess I will just have to learn to live with it. I’m learning each and every day how to live with my MS. I suppose a stick up my ass is no problem in comparion.

-A.D.

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

 

 

 

 

 

 

 

 

welcome home?

Some welcome home…

I leave a tropical paradise, heavily populated by women so beautiful they rival les belles Montréalaises, only to arrive home to what feels like 6 feet of that wet, heavy, good old Montreal snow. I couldn’t have picked a better day to land… c’est la vie! The first snowfall of the year is hard on everyone, all the more so on the day you arrive home from Costa Rica. Just my luck!

I’m sure everyone is on the edge of their seat, waiting for an update on my experience down South. And rightfully so; it was all of you that made it possible. Never in my life did I ever hope so forcefully that they would find something wrong with me! Good news; the initial Doppler ultrasound detected and 80% blockage in my left internal jugular vein (LIJV) and a 60% blockage in my right internal jugular (RIJV). Both my iliac (pelvic) and azygous (spinal cord) veins were obstruction free. Success! I was a viable candidate for surgery. Just as quickly as I got the news, I was on the operating table having my left femoral vein sliced open, a catheter inserted, and balloon angioplasty being performed immediately following the venogram — the venogram which provided a more accurate measure of the blockages in my veins; as it would turn out,  “during the procedure stenosis of 80% of the proximal segment and 90% at the distal segment of the right internal jugular vein were seen associated to reflux and slow flow. The left internal jugular vein presented an 80% narrowing. Dilation of these lesions was induced through the placement of a 18 x 40 mm Boston XXL Balloon and a 14 x 40 mm Maxi-LD Balloon. Improved vessel caliber, flow velocity and direction were seen following the dilation.”

These were the notes that were provided to me post-op. You’ll have to forgive me for the jargon, it really just seems easiest to copy and paste what the professionals noted. And while I’m no doctor, common sense dictates that they found something, something that was not right. And so, rightfully, they did what they could do safely to effectively eliminate the blockages – at least for now. The next step is to make an appointment with my general practitioner, and see if he is willing to write up a consult for me to have my internal jugular veins scanned in three months time to ensure that the blockages are still clear. In the interim, a pretty radical lifestyle change needs to occur; no more smoking. Anything. No more drinking. Anything – while I’m sure the occasional glass of wine wouldn’t kill me, the problem is that with me, it’s all or nothing. That being the case, the logical conclusion is to go with ‘nothing’. Because in this instance, that nothing could turn into my everything.

The days and months ahead are going to be hard. They are going to be filled with 7-day weeks where I will be exercising endlessly, trying to tone my atrophied leg and core muscles, all with the eventual hope that I can form new neural pathways to get my legs working. While it would have been great to come out of surgery with miraculous improvements, it just was not in the cards for me. I instead must keep working, keep pushing, and follow the advice of the medical professionals that treated me in Costa Rica.

To my surgeon, Dr. Diaz, to the physical therapy team that treated me post-op (Andrea, Sofie, Claudio — who I have affectionately nicknamed ‘the Hulk’), to the nursing staff who played nurse and psychologist and babysitter for many of us (Beverly and Javier), and to all the fellow Canucks who were down there with me, both those being treated, and those accompanying those being treated, I will never find words to properly express my thanks.

Lastly, to my sister Rachel, and to my brother Olivier, I owe you two a debt of gratitude that I will never be able to repay. I could not have done it without both of you. And it’s not over yet – in the days ahead, I will likely be turning to you for further support.

I said at the beginning of all of this that it was going to be an effort where many small parts make up the whole. I keep adding more and more parts… now it’s time to find the whole.

-A.D.