Kickin' ALS's Ass...

I have been working on writing a book on my experiences with ALS and sharing tips on daily living as well as, hopefully, some useful insights.  I will be posting it here as go along and appreciate any comments.

The Remote Control

We males are a simple lot.  We tend to avoid multitasking because we screw up multiple things at once.  We have laser-like focus on one thing at a time, often to the irritation of our wife or girlfriend (hopefully you don’t one of each concurrently!).

And as we all know, ‘‘what’s her’s is her’s and what’s ours is her’s’’...except for the remote.  This is where we draw the line in the sand.

Rejoice

Life is such a wonderful gift and most of us are so wrapped up in trivial matters, we forget to live.  When was the last time you took a walk with a loved one or dear friend?  How long since you hugged someone just because?  I could go on but you get the idea.

Carpe Diem should become a goal.

Rejoice in the simple, for therein dwells life!

More Ladies continued...

Sorry for the lack of postings. It takes quite awhile to type, one letter at a time, with a mouse and virtual keyboard.

This last installment of ‘Ladies’ is dedicated to my dream team: my lovely wife and daughters.

Their ceaseless harassment has engendered a continuos state of fun and light-heartedness that keeps us all upbeat and positive.  I am truly blessed.

More Ladies continued...

We have been very fortunate finding caregivers whose personalities are compatible.

Shirese has stepped into the fray like a long-time friend. Shirese is a single mom and her eight-year-old daughter is a positive fireball.

Shirese also has some unique experience that keeps me on my best behavior: she was an LAPD Police Officer for five years. I keep wondering about handcuffs...

The Ladies continued...

Since February we’ve had help on the weekends from a real character.  Henda is a wonderful addition to the support team.  Immigrating from France about 12 years ago, she has become a Naturalized Citizen.  Henda has a great wit and pulls no punches making sure I get my full ration every weekend.

You might be wondering why weekend support is needed since my lovely bride is available.  My current position on the ALS Adventure Road Map (not available at your local book seller) is the ‘road less traveled’ location, which I think is somewhere between Rock and Hardspot, Arizona.  This vacation venue requires guests to be totally dependent on others for even the simplest events like scratching your ear (caregivers can earn point for style). Guests must also be unable to breathe on their own (points given for coolest decals on the ventilator).

Weekend support allows the Little General to take care of resupply trips, etc. without worrying about my safety; it is all about me after all. ☺

The Ladies

One of the perquisites of having ALS, and having had the presence of mind to purchase long term care insurance, is the opportunity to meet some very special Ladies: my Caregivers. These Angels are indispensable in making the day-to-day mundane of ablutions, dressing, and culinary needs not so daunting.

Because these gems take such great care of me, I have been accused of ‘living like a King’ and that sentiment may not be far from the truth ( horror-stories about caregivers abound ).

Tomi (pronounced ‘toe-mee’) was with us for a year before returning to nursing school this last September.  Originally from Nigeria, she immigrated here 11 years ago at age 12.  When I started this blog, Tomi was kind enough to type for me. She is also quite talented; check out

http://www.reverbnation.com/main/overview_artist?feature=landingpage#/nextomi

Tomi is quite the young lady.

What if you knew...

...that in your 40‘s, 50‘s or 60‘s you were going to be the proud recipient of the shit end of the stick:  a seriously debilitating and/or terminal disease.  Would you make any changes?  It’s a good thing we’re not prescient.

We’ve all had a chuckle about the guy or gal who dodged some bullet and we remarked “boy are they on borrowed time”. Being diagnosed with ALS changes that to “boy are they on finite time”. The light at the end of the tunnel is truly a freight train; you just don’t know how fast it’s going.

We’ve all laughed about the saying, “life: no one gets out alive” and certainly this is a true statement. And most of us, if we’re lucky, just get lights out after a long and rewarding journey.  For me, ALS has provided the opportunity (yep, I really mean that) to get all the important things in order. It is imperative for your peace of mind to get all your ducks in a row:  Get the will set up. Get the powers of attorney in place. If need be, get the trust properly set up because the freight train is coming.

Make a bucket list and get crackin’!  Take control of those things that you can to ensure  maximum quality of life. Nobody’s ever put on their tombstone, ‟Gee, I wish I could have worked more.‟  I don’t want this to seem negative; quite the contrary; it is critical to be completely realistic: the clock is tick tick ticking.

Learning to drive

I remember well my father teaching me to drive in the old green 56’ Ford. When it came time to teach my daughters to drive a stick, I was often transported back to those times with my dad. Once again I am teaching people to drive. But this time, it’s an electric wheelchair.

As your muscles fade, you find that you must relinquish the chair-driving to someone else if you want to go anywhere. If your caregiver has experience, then it’s no big deal. But if it’s a family member or caregiver with no experience, you better strap in, hang on, and get ready for a ride. 

I encourage you to give them ample opportunity to practice in a big flat paved area. Learning on the sidewalk is not recommended: there seems to be some innate attraction between the wheelchair and the curb. I’m not sure if the wheelchair manufacturer programs this into the software or if it’s the result of a careless word spoken at the most inopportune time. Either way, you don’t want to go off the curb…very bad juju. Remember to just smile brightly, suck it up, be patient and say thank you.

Ire

I have recently received another “gift” from that little rat-bastard ALS: loss, through a tracheostomy (breathing is not overrated!), of my ability to speak (no doubt a few people think this a good thing). Language is arguably the oldest form of human interaction and being an unwilling participant in this vocal demise really raises my ire.


Ire. Now there’s a word one does not very often hear used. Maybe because of my situation I’m becoming overly sensitive to people’s use, or dare I say misuse, of language. During my working career, I had the pleasure, more than once, of working with people from Great Britain and Australia. I think everyone has heard the joking comment: “Three countries separated by a common language.” After working with these folks, it’s become clear to me that we could all brush up on our skills with our native language.


Whether your native language is English, Castilian, or Yoruba, I submit we would all communicate more clearly and accurately if we invested more time with a dictionary and thesaurus.

Stage Fright

Ahhh. Even if you’re not one for being very bashful, stage fright can strike when you least expect it. Most guys dream of being in the position of having an attractive young lady handling “Mr. Happy”. But when that handling is for the sole purpose of being properly aligned for a portable urinal, shrinkage, nay, abject fear strikes the unsuspecting corpora cavernosum and reduces you to a five year old straight out of the swimming pool.

Tommee Tippee

All of us have had to learn to drink from a cup or glass. Many of us or our children had the benefit of beginning this learning process with a Tommee Tippee cup. They work really well and generally prevent meal time disasters. As we progress through our teens and become adults, our prowess at handling various drinking vessels becomes second nature no longer requiring conscious thought.


When you drop your first glass of that really expensive libation, you are faced once again with serious thought about beverage control. Not only do you want to avoid wasting expensive beverages, you want to make sure you’re not receiving an impromptu bath. So, back to Tommee Tippee we go. Yeah, you’ll take good-natured crap from family and friends but the adult version of this venerable tool will afford you some independence for a little while longer.

Halloween

Always a great time of year given to really fun parties. When you are basically at the mercy of your family members and caregivers for your costume, boy are you in trouble.


Remember when your girls were little and they would play dress-up and get into mom’s make-up and “unmentionables”? Well, being a captive participant you can pretty much expect to be wearing clothing and make-up that would NEVER have seen the light of day in your former life.


But there is a silver lining: you don’t have to participate in some of the more inane games. Oh yes, did I mention you’ll take ten tons of crap from your buddies for your costume? Yep, no way to escape. And who knows, maybe you’ll take a liking to the red finger and toe-nail polish!

Read my lips

Everytime I hear this phrase, for some reason I think of George H.W. Bush and the 1988 Republican Convention. I’m not sure why, but that’s what pops into my little brain. Certainly, in 1988, I never thought that this phrase would become so important to my ability to communicate. But then I never dreamed I would have to have a tracheostomy either. Something about having a big-ass hole in your throat is a little disconcerting. But then maybe it’s not so bad since you no longer have to worry about choking.


Everyone in my support network is trying very hard to read my lips as the trach precludes my ability to speak. Truth be told, I think there are some people who are quite happy I’ve been shut up. But little do they know that I will speak again and then it’s payback time!

Bed snake bat

This little jewel is a 12-inch long wooden baseball bat with a small tether so it can’t be dropped. This was something we received, excuse me, my wife received as a wedding gift. In some countries, this is an acceptable form of birth control. Go figure. It was “lost” for the longest time and then somehow “magically” reappeared about the same time that I started needing to wear condom catheters to manage fluid output. I think my wife, knowing that someone else was going to be touching Mr. Happy, thought Mrs. Bat should make a return engagement to assure there was proper behavior.


My caregiver had the biggest giggle about this and threatens me regularly, regardless of the infraction, saying “don’t make me get the bat.”

Continuing Change

Just when you thought things might be slowing down, Uncle ALS throws you another curveball. Since my swallowing has been slowly copromised, fear of choking has been in the forefront. After a recent episode that required a trip to the emergency room, we decided to bite the bullet and get a G-tube placement. For those of you not familiar with a Gastric tube, it is a small tube that is in direct contact with your stomach. So all my food is now liquid and delivered throughout the day with no more worries about choking. The peace of mind this has brought has been well worth it. Onward and upward!

Hurt me, beat me

When you get far enough along in the adventure, your caregiver takes on the role of being the Mistress of the Tower, you know, as in the Tower of London. Being confined to a wheelchair all day, because you have lost the majority of your ability to move your limbs, requires someone to move them for you to help your circulation. Sometimes, this is uncomfortable because your muscles have decided they’re not really interested in moving. So hurt me, beat me, takes on a new connotation and one that is absolutely necessary: You gotta keep movin’.

Global warming

Ok. I admit it. It’s all my fault. I am the one responsible for global warming. If you remember back a couple of years, scientists were remarking about the increase in temperature around the globe. I find it interesting that this increase in temperature exactly coincides not only with my ALS diagnosis, but one of the side-effects of ALS: an unlimited supply of flatulence.


Make no mistake: you don’t get the nickname Gasius Clay for nothing! And it seems to be a universal phenomenon. No matter what I eat or drink, there is continuous global warming.


My apologies to all.

Butt in a sling

Most of us throughout our lives kept trying to avoid this phenomenon. Try as we might, to a more or lesser degree, each of us has had a seat at least one time. Being a somewhat regular visitor, I was very well prepared when my buddy ALS informed me that my butt was now once again in a sling. Literally.


While it’s nice to have pretty women helping you into your chair, out of your chair, into bed, etc, there unfortunately comes a time when safety takes precedence over being lovingly squashed by women and their chests (bummer).


The Hoyer lift, with its sling, really does make transferring much easier for all concerned. But a word to the wise: once you’re in the sling and up in the air, it’s a really good idea to keep your mouth shut and not bring up some infraction that might have just happened. Otherwise you might just be left high and dry, swinging in the wind with your butt truly in a sling.

Milkshakes

Old-fashioned milkshakes are really good. A little milk, a little flavor, some ice cream, all thrown in an appropriate receptacle with a top and shaken like crazy. Mmm mm good!


It seems that some twisted researcher had the bright idea that this “shaken like crazy” thingy might be great for one’s lungs to vigorously help support expelling all the “nasty stuff” (a technical term) in a clogged set of lungs. Not to be dissuaded by my clear chest x-rays, a contraption arrived one day at the house. Its sole purpose is to wrap around my chest and shake hell out of my lungs. No sooner had this instrument of torture arrived, the manufacturer’s representative showed up to teach us how to inflict maximum annoyance, much to the delight of my caregiver and my wife.


The standard regimen is 20 minutes in the morning and 20 minutes in the afternoon. This device (no doubt designed by the Marquis de Sade himself), really rattles your teeth along with your lungs. So far, I have been able to convince my support team, with a promise to be on my best behavior, that 20 minutes in the morning is enough.