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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4 thoughts on “The Panel

  1. Auntie Margie says:

    Lots to disgust Andrew – love the use of electricity as a metaphor for MS – helps the ignorant like me understand the complex disease better. You know I love you.

  2. Shirl says:

    Thanks for the info. Good post.

  3. swisskarene@yahoo.ca says:

    So appreciate your view and outlook.

    Have a nice day. I’m feeling slightly under the weather. I have finely sent Adam my papers.

    Lets get together! Beer…

    JK 8o)

  4. Sususy says:

    Great post Andrew, hope you are warm and happy. Cheers Ruth-Ann and Dan

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