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

 

 

 

 

 

 

 

 

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He’s baaaaaaack!

I got a bug to write. I was filling out a Google profile, and it sort of merged into this blog post. So without further ado:

I’m a 30-year-old guy living with multiple sclerosis (MS). The disease ravaged me pretty hard; it was 10 months from my diagnosis to me being in a wheelchair full-time. Then the tremor set in. There’s more, but I won’t bore you with the details.

I have tried just about everything to slow down or stop my disease progression. I’ve been to Costa Rica to have  veinoplasty performed.I have taken a number of varying “disease modifying therapies” (DMTs), both Rebif as well as (though short-lived) Tysabri. I then had one of the foremost neurologists in Canada look at my MRI, and he counseled me to avoid  Tysabri as it was still new on the market and there had been some… Incidents. His recommended course of treatment, however, was just as aggressive as my disease; chemotherapy. First it was a drug called Mitoxantrone. Piece of cake. No side effects. Was once every three months. But again, it was short-lived.  There is a lifetime limit to how much mitoxantrone you can be dosed with. After nine treatments, it was on to the next monster; cyclophosphamide. this is a far more aggressive antineoplastic, used in a variety of cocktails and to treat everything from breast cancer to pancreatic cancer. Neurologists like to use it to dampen your immune system and it has been shown to have some beneficial properties to those afflicted with MS.,. But don’t think for a second that it doesn’t come rife with side effects. So, I was in chemotherapy for I think roughly 3 years. And then I was forced to discontinue so that my  red and white blood cell counts would return to normal  in preparedness for open brain surgery. I underwent a procedure called “Deep Brain Stimulation” (DBS), a two-part procedure. Where I underwent open brain surgery for roughly 6 hours, fully conscious (I think you need to be conscious for any brain surgery). My neurosurgeon then performs “stimulation” by connecting a lead to my left thalamus to control the tremor on my right side, running electrical currents directly into  parts of my thalamus that would eventually be wrapped with an electrode inserted into it to transmit the electrical signal that would no longer be routed to the proper pathway by my brain on its own,  and instead would be routed through a neurostimulator that I had implanted the following day in the second, 5-hour portion of the procedure (for this, i was put under twilight sedation). So now, when I hold up my right arm, the synapses that are consistently being fired by a my brain are now being routed through a device. A device that is actually chock-full of side effects. The cool thing about the neurostimulator is that I can turn the therapy off. Literally, the second I do, all the side effects that  it brings on disappear. I’m not joking when I say it’s pretty serious; I can’t at all speak French when the stimulators on. Not that I can do it very well, but it’s far more strained when the therapy is active. I can’t roll my R’s. I can’t sing (I could never sing well,, but but when the damn thing is off, I’m either rockin’ out to Rage Against the Machine or macramé’d to my sofa, pathetically curled up what  can only be called a big  ball of emo.

Okay, everyone’s waiting. Big changes. Again.

Malissa and I are no longer seeing each other. It’s a tale of woe, mistakes being made on both sides, not many breakups are easy. I only hope we remain friends. But the rest is between us.

My days living in “Le Forest Hill” are coming to a close. My oratory view is going to be a thing of the past, but so too is my enormous rent payment and borderline unmanageable on my income alone. It’s coming, before I know it, my 30th birthday will come and go and then I’ll start making my way to 31, but after going through in the last year, I finally put some serious and thought into what I need to do to best manage my disease, my responsibilities, and the relationships that I’ve been building over a lifetime. And so; I’m coming home. I’m moving back in with my mother. The truth is, she’s pretty astounding woman. Straight up, you can easily describe me with two words: MAMMA’S BOY. It’s sad but it’s the truth. I was missing a brother to beat me up or let me hone my fighting skills on him. I am what I am. So now, the challenge is finding an apartment that suits our needs. We are going to look at a prospective place on Sunday, tomorrow. Hopefully, it is everything we need.

While Malissa and I were dating, I repeatedly shirked my responsibilities as a friend to many, as a VP to the Tristan WilliaMS MS foundation, my family, and my friends. This was not her fault; I got so far entrenched in our relationship, in part because, after being single for five straight years, it was novel again. In addition, well I’m not going to lie; I missed someone wanting me.

My way forward though, I think is to be one of bachelorhood. The problem is, if I start dating somebody, I stop taking care of myself. And this in the end only kills my independence. I recognize and accept that I need help, but I do also need to challenge myself. Every day. For the rest of my life. Because that’s how it is for me. Wow–a wave of serenity just passed over me. I know I always say this, but I need to write more often…

I’m likely going to disappear again until the move is done and things get settled. My solemn oath to all you people who read my drivel is this: expect more drivel in the near future. And more often.

Enjoy the closing days of summer… Not sure what happened there!

-A.D.

The Call

Good news–I guess? Is having a date to have my head opened a good thing? Jury’s still out on that one, but for me, my anxiety level, the fact that I’ve been cleared by a 3-specialist team, and the fact that I was given a much clearer M.O. on how the entire surgery will go down all make me feel comfortable, inasmuch as such a thing is possible when facing a surgical intervention of this nature.

Step 1 was only clarified this morning for me – I am to report for a blood draw, hopefully one whose results will be returned post-haste. Once my platelet count has reached the appropriate level, they will determine whether I can be cleared for surgery. If my platelet count is still low (and it needs to be at a high-level for neurosurgery), they will provide both a platelet transfusion as well as something else called auto-immune ITP, a medication with which I won’t bore you with details of mechanism, etc. it is just used in surgery to increase platelet counts.

Provided my platelets have risen appropriately, I’m to report for surgery Tuesday morning. At least I get a free haircut!

Anyone reading this, please turn your thoughts to my friend and founder of The Tristan Williams MS Foundation (TWMSF) and “The Road to You” support group, created with such vision and fierce resolve–Tristan Williams. All positivity to him today!

-A.D.

The two-month post-op update

I have given myself adequate time. It’s been almost two months since I went under the knife, and the results couldn’t be more of a mixed bag. I’ve gone from highs in realizing that my tremor may finally be under control, to depths-of-despair wailing because the surgery, as predicted, brings out all my bad habits. I have much ground to cover, so forgive me if this is a lengthy one, but first and foremost:

Rest in peace, Christopher Reimer. Though our meetings were limited to the odd-Stampede BBQ here, or the after work drinks your sister, Nikki, and I had there…needless to say our face-time was limited. But in the 2 or 3 years that we got to know each other, Nikki, I discovered, had a wildly perceptive sense about her. It manifests itself in her work which I implore you to have a look at. I can’t imagine what she’s feeling right now – my sisters and my mother are my best friends, and to lose one of them would be catastrophic. Chris died in his sleep; he suffered from a heart condition, and it decided to take him February 21st. He was 26 years old. Please keep Nikki and her family in your thoughts as they attempt to deal.

All this suffering is tempered by me, at least a bit – I have felt the stirrings of a new lease on life; preliminary results are looking optimistic. Anyone who has been following my status updates on Crackbook has seen the incredible results – I did post a short video of me drinking a cup of coffee without a straw; this, as expected, did not last. As I continue to heal and the edema, or swelling, goes down, the Stimulator (the pace-maker-like device I now have routed firmly in my chest) needs to be adjusted. This is accomplished painlessly and non-invasively; a “wand” is placed on top of the stimulator, over my skin and clothing, and wirelessly adjusts the voltage via telemetry. I am now forced to carry that stimulator wand with me everywhere I go to make certain that the stimulator doesn’t get turned off by some random electrical field.

I was very much awake through day 1 of the surgery. Just like that, I was being rolled into the OR. The interns, the nurses, Dr. Sadikot, et.al assembled, and they asked me: “are you sure you want to go ahead with the operation?” And in my most vulnerable moment, I smiled. And said “I asked you all to be here today, so thank you; yes, let’s do it..” The experience was surreal. I didn’t get to do much watching, but once Dr. Sadikot began the stimulation, I felt pins and needles through my entire right side! It was truly astounding; I felt pins and needles throughout my legs, which have not had much sensation since 18 months after my diagnosis, circa November 2009. He then proceeded to perform some stimulation, calling out the number of volts so that it could be recorded along with my reaction to the various settings he programmed.

It was approximately 5 hours later that the back of my head was being stapled shut with a bone-crunching “thunk”. I don’t remember much more than that of the surgery, but I do remember Dr. Sadikot asking for four or five gown changes. Blood much? I wish I could’ve seen it!

And so, the second days’ surgery was uneventful. I shared some passing remarks with the Anesthesiologist apropos some of my bad habits. From the installation of the stimulator, I was wheeled up to 4 West, rm # 406 – and, for some time while I was under anesthetic, I saw my mother, my sisters, and their respective boyfriends/husbands while I was CRACKED right out. I’m pretty sure my sister asked whether I’d be lonely, and I believe I broke into song more or less immediately…

“lonely–i am so lonely…*

It was bad, but I was high outta my tree, and so…

And then the rehabilitation process set in. I spent another week at the Neuro, being well taken care of by the nurses and having access to my Neurosurgeon on a daily basis, as it was crucial to have the implants calibrated. They then called a code purple, which at the MNH, means that they’re at 200% capacity and to empty as many beds as possible. I wasn’t quite ready to go, but I knew enough to know that staying in a “non-ambulatory ward” was more detrimental to me than rehab at home. This meant I couldn’t even transfer from my chair on my own. There is a simple truth when it comes to MS – you don’t use it, you lose it, and here I was for 2 weeks, not even able to shower on my own.

Lucky me, my buddy Quentin, or Q, was there at my place to help me out. We’re talking putting me in the shower, getting me on and off the toilet, and the best housekeeping I’ve ever enjoyed since my sisters came over and did a big ol’ cleanup before I went in for my surgery. So my words to Q are nothing but thanks. This is my very best friend and I am lucky to have him around.

And so, the calibrations continue as I heal. I’m seeing Dr. Paniset at Hopital Notre-Dame for future calibrations. I’ll be sure to follow up with everyone in a few weeks’ time.

Until then, yours in health,

-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.