A New Use for an Old Friend

Besides the wheelchair and the bed, the only other item in my possession that I could not live without is my brown, faux-leather recliner.

It is way more than just a piece of furniture to me.

I receive at least three hours of forced air via my BiPap every evening while seated in the reclined position. So what if it dries out the saliva on my tongue and the roof of my mouth!?! It’s worth it for the 180+ minute respite of being drool-free.

I have seen countless movies and endless episodes of Real Housewives (of OC, NY, ATL, NJ, DC, BH, and MIA) on that chair. Bonus points if you can identify at least one current cast member from every city/region listed above AND you lack a Y chromosome. You can do it, fellas.

(Please don’t let me be the only one with this particular skill set).

I get tube-fed five meals a day of 350 calorie per serving Boost there. It used to be six times a day but when all I got for my birthday were an assortment of muumuus and elastic waistbanded pants, I knew it was time to cut back.

I watched every inning of the Giants’ World Championship Playoff run of 2010 while my ass pressed down onto that seat cushion. Everyone knows where they were on November 1, 2010 when the Gigantes won it all, don’t they?!

And from the upright position is where I do all of my Eye Gazing.

So, can you see what I’m saying about my recliner and how important it is to me in our household?!?

Well, just this past Thursday, we found yet another way to utilize this incredibly versatile piece of furniture:

As a massage table.

Since the prospect of getting me on an actual massage table is comical at best and dangerous at worst, we made the decision for me to receive my first in-home, therapeutic massage in the comfortable confines of my beloved recliner.

Best decision ever.

To use the chair AND to book the masseuse.

It has been a long time since I’ve felt so relaxed. My arms, legs, chest, back, neck and head. All letting go and staying gone throughout the entire treatment.

It was definitely a rude awakening to open my eyes and have to have all the oil wiped off of my body and chair.

But not so much of a hassle that I’m not counting down the hours until my next session.

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Thank you everyone for all the comments and good thoughts sent my way as a result of the Lost Mojo post. They were enthusiastically received and immediately taken to heart. I appreciate your support and I’ll do my best to not stay away so long in the future.

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The Latest Batch of Humiliating Pictures from the Files of ALS Boy

I receive an acupuncture treatment every two weeks from my friend and now-new mom Jen. Since I can’t really do stairs anymore, and because her Redwood City treatment center facility called Casa de Gallina has quite a large number of them, she brings her box of needles to me. Who says that house calls are a thing of the past?

For the dual purpose of education and entertainment, I present to you a few photos from my latest acupuncture session with Jen.

Jen makes it her mission each time to make sure that I stay warm, hence the plethora of blankets covering my frame. I heard somewhere that rubbing chili peppers on your feet works well too.

The needles in my ears and the one above my nose were placed there by Jen but the Disney Princess tattoo on my neck was all the doing of Emma and Fehmeen.

Since I'm a music snob who prefers not to listen to the typical new age hippie music that is typically associated with this kind of therapy during my session, Jen allows me to choose my own tunage. This week it was the Zac Brown Band.

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The Divorced Philosopher

Every other Friday I have a one hour appointment with Troy Mandala — a pseudonym for purposes of anonymity — so he can practice medical Chi Gong on me.  I have been with Troy for a while now, ever since my previous healer moved to Atlanta and her replacement ran afoul of one too many radar guns in a short period of time and got his drivers license revoked.

For the uninitiated, medical Chi Gong is, in my uneducated in the ways of Traditional Chinese Medicine opinion, like acupuncture times a thousand in terms of energy movement through one’s body.  The hour goes by in moments and I always leave our sessions feeling refreshed, re-energized, and completely rejuvenated.

In more than six months of bi-weekly visits, the most we ever talked about — and by talking I mean him speaking and me nodding my head and smiling — was the weather, the Giants, and the 49ers.  But that all changed today about five minutes into my treatment.

Troy was just beginning to remove some energy from the area around my chest and stomach when he heard the front door of the office open.  Since we were in a private room approximately twenty feet away, he stopped moving his hands and arms for a moment in order to see exactly who had entered his studio.  The door closed seconds later and he continued clearing the energy off of me.

I looked at him and with my eyes I asked him who that was and said that it was just his ex-wife dropping something off for him.

What happened next was completely unprecedented in our shared experience together and totally out of character based on what my preconceived notion of what I envisioned from a master of the learned art of medical Chi Gong.  It was also the most riveting and compelling fifteen minute calm and in-control diatribes and rants I have ever been witness to in my life.

He began with statistics citing that 50% of marriages in this country end in divorce.  The odds are the same if you flip a coin.  In my head I tried to calculate the probability if a person was married four times.  Before I could finish the math, I found myself grunting in approval.

Then Troy told me a story about the Unification Church and how its founder Sun Myung Moon would gather his followers — aka Moonies — and line up boy-girl boy-girl on the field of some stadium.  He then instructed them to face one another and proceeded to marry each of the couples in a mass ceremony minutes later.  Studies showed that the divorce rate amongst those couples to be at a mere 30%.  I wanted to chime in with a litany of counterpoints but found myself grunting politely instead.

He then launched into a discussion about if a woman wants to be Queen for the Day then she should just purchase an expensive dress, hire a limousine, rent a hall, and invite all of her friends for the party of their lives.  There is no need to drag some poor guy into it if she plans on ruining his life eventually anyway.  I grunted my best tell me more grunt.

Then he speculated that if he could play God for a while that he would make it that both people in a relationship have to be emotionally and mentally mature before they can have children.  He stated with a smile that as a result of his heavenly edict that humans would most likely become an endangered species of about five.  Smiling profusely, I grunted not once but twice.  Loosely translated, it meant please keep going, please keep going.

Feeling the energy and enthusiasm emanating from the crowd of one, he proposed that marriages should have a five year term limit on them.  At that point in time, both parties would have the option to renew the marriage contract for an additional five years.  If one of the persons decides that the union is not living up to the agreed upon specifications, simply put, it’s over.  Speechless grunting from the delegate from San Carlos.

He then said that there should be a law on the books which requires the adult recipient of child support to disclose exactly what that money is spent on.  I gave him a series of grunts that I hoped conveyed an I feel your pain vibe.

He concluded on the following note:  While sometimes things seem to work out for people in married relationships but if it doesn’t pan out,  one can always become a philosopher.

And just like that it was over.  He didn’t speak for the balance of the session except to sheepishly say sorry for laying that on all me.  I just looked hhim in the eyes and grunted it’s okay.

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Breathing Easier

I don’t recall where I picked up this little tidbit of information but it sounds reasonable enough so I’m going to go with it as if it was true for the sake of this introduction.  You know how if five people witness the same accident that they would have five different versions of what went down depending upon their particular point of view, well this entry will kinda be like that but not exactly.  First of all, there are only four people and we weren’t eyewitness to any mayhem of the man-made or naturally occurring variety.  We did, however, share a common experience this morning that I would like to recount to you at this time.

The Event:  Training me how to use my lifespan extending Bi-PAP breathing machine.

The Location:  ALS Clinic at UCSF.

The Players:  The Italian Man Servant (my dad), Mele (my caregiver), Colleen (my respiratory therapist), and ALS Boy (sexy beast).

Transcendent Moment(s):

• Mele:  First visit to UCSF.  Enthralled with cool wall sculpture in Clinic lobby.  Deftly assembled life-giving device with humidifier in record time.
• ALS Boy:  Assisted breathing can actually be comfortable when the volume of air being blown down your neck doesn’t resemble gale-force winds off the Gulf Coast during hurricane season.  It’s amazing what can be accomplished with a patient instructor, a clear head and a relaxed body, and a little groovy tunage via an iPhone.
• Colleen:  Playing music as a way to calm your client during their initial encounters with an intimidating Bi-PAP machine can be rather beneficial to all parties involved.  What started out as my smart-ass request for music to breathe by has turned into something potentially helpful for others.
• Italian Man Servant:  Nothing about the extremely positive appointment would compare to the abject anger and utter disbelief that he had for the UCSF establishment when he was forced to fork over six bucks for parking despite being in possession of a blue handicapped placard.  Add to that the fact that it used to be free up until about a month ago and you can just imagine what Mele and I had to hear about until we got on 19th Avenue.

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Breathing Easy(er)

Everything we ever needed to know about BiPAP we learned in ten minutes.

Muchas gracias to Peggy and Cyndi and the entire team in the Pulmonary Medicine department at Santa Clara Kaiser.   Throughout the duration of my personal ALS experience in regards to the astronomical number of doctor visits I’ve accumulated,  it is their department I enjoy going back to time and time again.

Since I tend to be a mouth breather (ha ha) when asleep,  Peggy switched out the more highly touted nasal pillow face attachment I had been told was better for the old school,  traditional over-nose-and-mouth-combo mask.   The difference between the two devices was rather pronounced:  The former transformed me into even more of a saliva monster than I already am and the latter was,  in the immortal words of Goldilocks,  just right.

I will tell you right now,  this thing is going to take a little time to get used to.   Don’t expect me to make it through the night for a while,  okay Fehmeen and Peggy and Cyndi and even our friend R-Lean the RT.

I would appreciate any advice or or even an amusing anecdote from any member in good standing of the sibling-hood of the ventilated BiPAP.   Thanks for your (life) support.

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Strive for Five

Based upon the fact that my latest breathing scores were lower than the Giants’ winning percentage versus the Padres this year,  the brain trust here at Team ALS Boy decided to bite the proverbial bullet and get me hooked up to a BiPAP machine.   Just a little bit at first,  so I could get used to it,  in the event that I would have to depend on it,  you know,  to breathe and stuff.

Contrary to what you may be inferring from the previous sentence,  I was all-in on the respirator as well.   I am willing to try just about anything to maximize my time on this big,  blue spinning ball that we call Earth.

So today was the day that we were supposed to get a visit from a mobile Respiratory Therapist in order to start me down the path to assisted breathing.   They sent R-Lean The RT instead.

Now I have nothing against this kind and pleasant woman per se,  but the appointment didn’t go necessarily as planned.   Without going into a whole lot of detail,  let’s just say that we found out a crapload more about her new roommate’s liver issues,  her own injured right arm,  and the sound of her Blackberry’s ringtone than we did about the functions of the BiPAP.

Once the mask was attached to my face via my rather prominent nasal cavity,  then the good times really started to roll.  I couldn’t get into the rhythm of the forced breaths and to paraphrase the IAMS,  I was drooling more than a St  Bernard.   Needless to say,  the appointment was a bust and she exited the house with these following words:

“When you receive an evaluation card in the mail,  remember that we strive for five.”

And then she left.

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Leisure Rules

Here is a picture of me yesterday afternoon sporting the new DynaSplints on my paws.   I am only allowed to wear them for two hours the first day,  three hours the next day and so on and so on until I reach between six to eight hours per session.  They are rather heavy and quite cumbersome and heaven help me if an unrelenting itch comes down the pike.   For the record,  I am listening to Tim McGraw’s Greatest Hits.

ALS Boy in relaxation mode

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Stretch HandStrong

One of the first things you’ll notice about me — besides my inability to walk and talk or my propensity to drool excessively after yawning or the fact that I still think farts are funny — is that my hands always seem to be balled up in a fist.  No, I’m not looking for the ALS chapter of Fight Club — the first rule of ALS Fight Club is don’t eye gaze about ALS Fight Club — it’s just that ever since I was diagnosed in February 08,  my digits have been waging a losing battle with prolonged extension.   Basically,  it is absolutely friggin impossible for me to stretch out my fingers.

Until we met Felix from DynaSplint.

Felix came over,  assessed my situation,  and fitted me for a pair I could call my own.  He got approval from the HMO known for Thriving in one short fortnight and even spent an hour over the house  yesterday educating my posse on their  setup and proper usage.  Here’s the skinny:

I place my hands palm down,  fingers spread wide in what looks like from underneath a tiny baseball glove.  The plastic mitt is attached to a splint which in turn is fastened quite securely to my wrist.  The net effect is a most pleasant and sustained stretch of my fingers and wrists.

Ahhhhhhhhh!

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My Happy Place

To get to the place where I can simply just be, we have to traverse tree-lined suburban avenues whose sidewalks are filled with the names of those who were fortunate enough to be there just as the cement was drying.  Before too long, the streets transform to a more urban entity with used book stores and consignment shops and doughnut joints and comic book shops and places that sell records, tapes, and CDs as far as the eye can see. Somewhere amidst this bustling cityscape, an oasis of green presents itself to us. We climb part way up a grassy hill and place our blanket next to an implausibly giant tree. We sit. And we feast. We eat roast beef sandwiches on sourdough rolls from Roma’s Deli in San Bruno and we drink from a bottomless bottle of Dr. Pepper. We listen to an endless mix of Tom Waits (Rain Dogs, Swordfishtrombones, and Mule Variations), Steve Earle (Transcendental Blues and Washington Square Serenade) and Abba (Gold). We watch the unending parade of people playing every game imaginable as the scent of Nag Champa incense wafts by on a barely noticeable  breeze. Welcome to my happy place.

Typed on Leannie Oakley

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Better Living Through Pharmaceuticals

Here is a list of the pills and vitamins — aka Daddy’s Little Helpers — that I take two times a day (unless otherwise indicated).

• Baclofen – This is a muscle relaxer. I’ve upped my dosage from 20mg to 60mg and it has made all the difference.  No more spasticity in my legs and arms.
• Rilutek – The only FDA-approved ALS drug on the market. Benefits are not well-known but it doesn’t hurt to try. Plus , if you let it dissolve in your mouth you get that numb-tongue feeling (reminiscent of that Clapton song from the seventies).
• Avanir – My clinical trial drug. I can with absolute certainty attest that these pills control my fits of uncontrollable laughing and crying. I could not and would not want to live without it.
• Omega Fish Oil, Vitamin B-12, CO-Q10, Florasmart – This is it for my vitamin regimen. Way less than the volume of horse pills Dr. Sarah had me on .
• Fiber Gummies – I have gone from pooping twice a week to nearly once per day. Enough said on that subject.
• Ensure – I am still not used to burping after having one of these poured down my feeding tube. Up to two cans a day.

And then there are the occasional trips to the movies with Bubba K., Mamoo, and Pinner.

Typed  with love by Michele W.

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