Official Prognosis:  U R a “L”

An Interview with Paul Barlow P.A.C. from Derry Neurological Associates of New Hampshire. Mr. Barlow is part of the highly skilled professional team that oversees my Multiple Sclerosis treatment. He also speaks at MS patient support events, and he built and rides an old Triumph.

On a recent afternoon, coincidentally after someone called a bomb threat into his office building, he finally was able to spare a few moments from his busy schedule for this candid interview.

 

Longhaulpaul   “Thanks for taking the time to answer my questions today, Paul.”

 

Barlow  “Sure, I always draw the short straw.”

 

Longhaulpaul   “What is a P.A.C? Is that like a glorified Nurse Assistant?”

 

Barlow  “Glorified Nurse Assistant?  I wish!  They have a union and get overtime. The Physician’s Assistant profession was created to fill a void and meet a need.  During Vietnam, Corpsmen and Combat Medics performed in a similar capacity to physicians to meet the needs of injured soldiers.  When these experienced individuals returned home, there was no equivalent civilian career waiting for them.  They were not nurses, and they were not doctors.  The PA profession was born from this, and the education process was created by physicians, and modeled after medical school.  It currently is 6 semesters of professional education, consisting of 42 weeks of classroom education followed by 42 weeks of clinical exposure.  Doctors, in comparison, undergo an additional semester of each, and then undergo their residency.”   

 

Longhaulpaul  “Didn’t you used to be in construction?”

 

Barlow ” I hung drywall- but not well, did electrical work, concrete resurfacing, sold securities and insurance, worked retail, was in Bosnia for Uncle Sam a bit, was a nursing assistant, worked in cancer and genetic research at Harvard; which, much like sleeping in a muddy foxhole, is cooler to hear yourself say than it is to actually do.  I sold lithographic prints business-to-business until it landed me in jail for a few hours in a small town in Alabama.  I had way too many teeth and my eyelashes were too long for me to survive in prison.   I worked a printing press for a short time; I did whatever fed my wife and four daughters.  I was good at fixing stuff, thinking about problems in my head, and solving them. I had some boredom issues.”

 

Longhaulpaul   “What circumstances made you decide to pursue a new career in medicine and specifically Neurology?”

 

Barlow  “I choose to specialize in neurology for three reasons. First, I was a little paranoid if I went into psychiatry, the person in charge of the door buzzer on the inpatient ward might never let me out.

Second, I was offered a job when I graduated and it sounded cool when I told people I was going into neurology.

The third reason I chose Neurology, and probably the answer you were digging for, is my youngest daughter. My daughter was diagnosed with a neurodegenerative disease when she was about a year and a half old.  Since that time I have had a hard time considering any other clinical focus.”

 

Longhaulpaul  “But unlike a shoemakers kid, you’re making sure your Daughter is getting the absolute very best care and treatments available, and that makes you a pretty amazing Dad. How long have you been in neurology?”

 

Barlow   “I have been in Neurosciences for 12 years and if you count non-human experience, I have been involved in the field in some way for about 16 years.”

 

Longhaulpaul   “Are you allowed to openly discuss your Alien research?”

 

Barlow  “No, but I can discuss the fish brains research I was involved in.  Don’t look so disappointed, the experience with fish helped prepare me to take care of some of my patients, ones like you.

 

Longhaulpaul  “Could you give ten examples why I am your favorite client?

 

Barlow   “No.”

 

Longhaulpaul   “Could you explain Multiple Sclerosis to my readers in medical terms?”

 

Barlow  “Multiple sclerosis or MS, is an immune-mediated inflammatory disease that attacks myelinated axons in the central nervous system or CNS, destroying the myelin and the axon in variable degrees. In most cases, the disease follows a relapsing-remitting pattern, with short-term episodes of neurologic deficits that resolve completely or almost completely. A minority of patients experience steadily progressive neurologic deterioration.” 

 (He looks up from his grandpa reading glasses, sees me accidentally yawn) 

Barlow  “I see that was very helpful.  My eyes are glazed over just by reading that short boring definition from Medscape. I’d rather not have to call for the crash cart, or worse, having the nurse find us both fast asleep on the exam table.”

 

Longhaulpaul  “Yeah, Maybe we should put the lights back on, just to be safe?”

 

 Barlow  “Let me try to put this in the framework of a motorcycle. The central nervous system is the wiring harness on your bike.  Each insulated wire on the bike is similar to a myelinated axon.  The myelin is essentially the plastic insulation, only it’s made up of a fatty substance created by oligodendrocytes… Let’s just call them O cells.   Now, set that information aside.”

 

Longhaulpaul  “Are those new shoes?” (As I get caught staring at the floor)

 

Barlow  “Losing you again? Ok, let’s try this; you ride a motorcycle. 

It was built with insulated wires that are edible to the cockroaches that wander the saddlebags and dark, protected areas of the bike.  These wires or Twizzlers are only edible, or tasty when the conditions are right. 

Let’s imagine you are on a trip, and have packed lots of snacks on the bike and it is getting warm.  The cockroaches multiply like rabbits having 1000 babies at a time, happily seizing the day and living in the moment.  It becomes a cross between insect Woodstock and the endearing movie “Joe’s Apartment”.   The conditions are just right. Sadly, the snacks in the bike dwindle, making the insulation Twizzlers a reasonable option to eat.”

 

Longhaulpaul  (As I sit up)  “Ok, I’m actually following this, candy, fornicating, parties, bikes and roaches, go on….”

 

Barlow  “Like me, Cockroaches, don’t mind the Twizzlers, and when all the other preferred snacks are being devoured by 100,000 of their first and second degree relatives, they begin to look for alternatives.  Partly so Uncle Mickey’s 3000 kids don’t crap their dirty little nugget droppings on them while they were trying to taste the main entree that day, and partly because they just need to eat.

So a few roaches wander from the saddle bag and stumble across some reasonably tasty Twizzlers and start to eat.  Eventually, some of the other more civilized fauna join them and meaningful amounts of protective insulation are lost. 

At some point the bike starts to have noticeable consequences like a flickering headlamp, a gradual loss of battery charge, or an occasional blown fuse. The harness has become compromised, as does the vehicles dependability.

Eventually this particular ride stops due to equipment failure.  You notice that all of your favorite snacks in your saddlebags have been turned into a substantial pile of fine brown granules and empty egg cases.  You wonder if the granules might taste anything like the jerky and trail mix they used to be.  I don’t think even you would eat that, no matter how hungry you were. Would You?”

 

Longhaulpaul  “Probably not.”

 

Barlow  “You see the swarms of roaches and the swollen infested wiring harnesses of the bike.  You see the damage to the wires and it reminds you of a time you had to strip wires with your teeth late at night splicing in a USB jack to power your GPS. You decide blow-torching the insects may not the best way to get them off the exposed wires, and settle on the spray from a self-serve car wash.  You are able to push back the throng of roaches into the hidden recesses of your bags and soak your exposed wiring in the process.  It will eventually dry, and you will avoid making the evening news as a fiery ball of flames on I-95 in whatever state you are in. The water has drawbacks but is better than letting the colony completely devour all meaningful electrical function on the bike.”

 

Longhaulpaul   “Umm, Is this a true story? Because I never wash my bikes.”

 

Barlow   “Try to pay attention.”

 

Barlow   “You park the bike for a day or more until it is dry enough to replace the blown fuses without re-cooking them immediately. You can tape up the damaged wires you can reach but you can’t get to all the problem spots. Hopefully enough soapy corrosion will encrust the remaining exposed wires to prevent further short circuits before the ride is over.  You will be able to replace the entire wiring harness or get a new bike before the next big rally.”

 

Longhaulpaul   “I think you mean the bike is me, right?”

 

Barlow   “Yes, and the harness is a part of you that medical science has yet to find a way to repair, and usually does more harm than good when they do try to repair the damage.

 

The copper wires and electronic components are your brain cells and the insulation is your myelin sheath made by the oligodendrocytes. The roaches are your own over active immune system.”

 

Longhaulpaul   “So, until a cure is found, I have to keep my mangled, cobbled, spliced and corroded nervous system?”

 

Barlow   “Unfortunately, yes. Something has triggered your immune system to target the O cells in your brain and spine.  If you kill off all the roaches (immune system) something worse will occupy the bike and the bike will be no more than a lawn ornament (worm food).  You are left loading up the bike with a non-conductive, nonflammable decoy snack at regular intervals that makes the insulation appear less appetizing. This snack is your platform therapy. Sadly, the medication doesn’t come from Keebler.  It comes in injectable, intravenous, and just recently, tablet forms.  None of the treatments are universally effective and they all have side effects.  These range from nuisance to fatal.  The side effects can include welts at the site of injection, brain infection, liver failure, depression, fatal cardiac events, and various other looming dark clouds. Getting on a therapy or disease modifying drug early, and staying on it, has shown to slow the progression of disability.”

 

Longhaulpaul   “So, I inject this disease modifying snack daily and it slows the progression of the disease by keeping the roaches busy. That’s great, but what happens when I do get another attack or flare-up?”

 

Barlow   “If the roaches chew on the harness anyway, you will have to resort to the car wash again, but the real recovery time is not measured in hours, but in weeks.  This represents the acute treatment of an MS exacerbation with steroids, adrenocortotropic hormone (ACTH), and some off label use of IVIG and plasmapheresis.  These don’t fix the problem.  They simply try to calm the colony of roaches and stop further destruction.  Usually, people feel some improvement at four to six weeks after acute treatment of an attack.  There is often some amount of permanent destruction and decline.  Not always enough that we professionals can measure; but enough that the patient, their family, and often close friends will notice. The more frequent the attacks, the more likely decline or permanent disability will occur.”

 

Longhaulpaul   “So, do you think my ex-wife gave me this disease?”

 

Barlow   “Umm..Not likely.”

 

Barlow   “All motorcycles are on the road for only a limited amount of time.  Having Multiple Sclerosis adds a faster rate of wear and tear to the machine but we must remember it is still as much a motorcycle as all the others. It’s just a little more like, well hey, what was that undependable finicky, weird bike you rode around the country during the Ironbutt Rally called?”

 

Longhaulpaul   “Oh man, you are not going there, are you really going to compare ‘all of this’ (wide hand gesture around my head and upper torso) to a Russian URAL? (I get up) “Thanks for your time, Paul, but this interview is freakin over…”

 

(End of Interview)

 

Depression is a very common symptom of MS. Sometimes it can be externally provoked. 

Why can’t I be a BMW?