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/

 

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That episode of The Simpsons where Homer was interviewed on “Rock Bottom”? (S06E09)

Did you watch it? If not, please take a moment of your time and watch.

http://bit.ly/ljuz66 <– advance to time index 11:05, and enjoy.

What did you take from those 2:30? That it’s difficult for me to make a sandwich, that I said the words “loosey-goosey-willy-nilly”, and that I am happy CCSVI Trials are coming to Canada, though I’m a little worried that I may not meet the inclusion criteria (e.g.: the trial group will be made up solely of Relapsing Remitting—RRMS– patients, and my diagnosis will have been changed to Secondary Progressive—SPMS– by that time). Where it strays off the trodden-path is that this trial doesn’t involve a drug and is not being funded by big Pharma. This is unknown territory for me, which is only now bringing me to the realization that my recorded comments vis-a-vis being the “magic level of handicapped” may have been kind of irrelevant.

The CBC contacted me via e-mail the night before they ‘filmtroviewed’ me. I had to be up early the next morning so that a jovial and friendly nurse could practice her ‘pokey-stabby’ (thanks again for that one, Cat) and fill a little cylindrical container with blood, ensuring that the right balance between immuno-surpression and overall health is being achieved; nobody’s trying to kill me – though that is sometimes how it feels as I’m retching over my toilet, doing my best to avoid splashing vomit on the toilet rim, streamlining clean-up into a flush and brushing my teeth (and palate…and cheeks… and gums…and tongue). The intention is instead to dampen my immune system in an attempt to hit the “off” switch on my disease. But flipping that switch comes at a price; and yes, I ask myself everyday whether I should keep it up, or whether I should just give my body a break. I am coming up on year 3 – it sure feels like it may be time.

On point – I didn’t take much time to prepare, but did think the breadth of knowledge that I have been amassing with varying levels of intensity for my whole life (seriously – my Dad has MS. remember?) would carry me through without problem. From the feedback I’ve received (though all from people I’m close to), I did ok. Right until I said that block of four words that have now been immortalized by the CBC, that I received a string of ball-busting text-messages regarding, and that my brother-in-law will never let me forget.

“Loosey-goosey-willy-nilly”. The way it was portrayed in the interview makes it sound like I was making disparaging remarks in regards to Costa Rica (and therefore Passport Medical, the medical tourism company that arranged my trip -and yes, it was expensive, but they provided a service: a surgery somehow paradoxically performed on a daily basis yet not available domestically to me). In the end, my family, my friends, and I decided to go for it – I said yes and everyone I know, a bunch of people I didn’t know until we shook hands at one of the fund-raising events hosted by my friends and family showed their agreement and support as well by helping me to afford the burdensome cost the trip would incur. Despite any misgivings I may have had about venoplasty as a treatment for MS, I recognized the limited options I had remaining and chose to give ‘er (as we say out West), going in with no expectations and a lot of hope. My experience was non-miraculous. Medically, you would call it “unremarkable”. But at least I tried.  Upon my return home, three months post-op, what I feared would happen happened; my general practitioner (GP), who I had ensured would agree with what I was doing before I went down so that I at least had a professional to assist with follow-up care, has done everything I’ve asked him to, but is limited as to how far he can actually take it. He’s great at writing papers for referrals to imaging labs so that I can have follow-up scans done, but the Québec College of Physicians has instructed any and all imaging labs to disregard requests for scans from MS patients pertaining to CCSVI. To this day, seven months postop, I still have yet to have follow-up Doppler ultrasound done. There could be a clot floating around in one of my jugulars, but because I traveled abroad, or maybe because there’s not enough empirical data on the procedure I had done, or perhaps just as I have really shitty luck – all four imaging labs I contacted in Québec refused to provide the scan I needed.

At first, I was a little upset with the CBC – I said many intelligent things, anyone who reads my blogs knows that I’m not lying. I said one thing that made me come off as a NASCAR fan, and what makes it into the piece? Oy…

I understand why it worked out that way. Nobody likes to feel like they’re in some sort of English class when they’re watching the news. I guess “Loosey-goosey-willy-nilly” gave it a little bit of flavour. Just to clarify though, that comment was in reference to the fact that ANYBODY could have the procedure done overseas, whereas in Canada, we are far more stringent in the selection process for procedures of this elk.

Just to contextualize for y’all… I was in no way making negative statements about my experience in Costa Rica, Passport Medical, or even the procedure itself. There is much that is yet to be discovered about virtually everything involved in the pathogenesis of MS. This is one road, one avenue, that I think needs further study, and less immediate dismissal by the medical community at large.

Keep cool, the summer heat has finally arrived!

-A.D.