The Last Adventure: Living with Amyotrophic Lateral Sclerosis (ALS)

By Marcel LaPerriere

In The Last Adventure, the third in a series, Marcel LaPerriere continues to address the multitude of mental and physical issues that affect someone living with Amyotrophic Lateral Sclerosi

• Language: English
• Publisher: Macel
• Release date: Sep 6, 2022
• ISBN: 9798218063467

Book preview

The

Last

Adventure

Other books by Marcel LaPerriere

Just Another Adventure

The Adventure Continues

and

The Road to Adventure

The

Last

Adventure

Living with Amyotrophic Lateral Sclerosis (ALS)

By

Marcel LaPerriere

Copyright © Marcel LaPerriere, 2021

All rights reserved. No part of this publication may be reproduced, distributed, or transmitted in any form or by any means, including photocopying, recording, digital scanning, or other electronic or mechanical methods, without the prior written permission of the author, except in the case of brief quotations embodied in critical reviews and certain other noncommercial uses permitted by copyright law.

Published by Marcel LaPerriere, 2022

Printed in the United States of America

Distributed by Ingram Spark

Book design: Dana G. Anderson

Ebook formatting: Steven W. Booth, Genius Book Services

Editors: Bonnie and Max Cotrell

The events and experiences that follow are all true, based on the author’s recollection of them. In some situations, names, identities, and other specifics of individuals have been changed in order to protect their privacy.

Dedication

To all pALS and cALS around the world

pALS, PALS, or Pals:

Person, patient, or people with ALS

cALS, CALS, or Cals:

Caregiver of anyone living with ALS

Note: Throughout this book, other books, or online, you are apt to see the above abbreviations when talking about ALS and caregivers who care for people living with ALS. I’ve noticed even medical folks are starting to use these abbreviations.

.

Table of Contents

Dedication

Introduction

Timeline

Essays

Classical Homework

Getting Harder

Better Than a Sharp Stick in the Eye

When a Baby’s First Word Is Fuck

You Can Call Me Hollywood

Self-Worth

A Puppy Peed on Me

Revisionist History

Living on the Edge

Visiting Neurologist

Runaway Dream

Dirtbag Diaries

Veteran’s Day

Dear Wife

Envy and Schadenfreude

Gasping for Air

ALS Association Podcast Idea

Two Steps Down; a Half Step Back Up

As Bad as it Is

Hunkered Down

Procrastination

Trilogy 100 Noninvasive Ventilator

Covid-19

You Look Good

Just Another Adventure

Things That Make You Go, Humm

An Amazing Gift

Sorry, You Have ALS

Total Dedication

Erythema Multiforme

Soda Pop

Medical Aid in Dying

The Seven-Year Itch

Trust

Immortality

Goats and a Goofy Kid

Give and Take

The Lack of Sleep Brought to You by the Letter P

Thumbs and Reflections of Better Times

Lou Gehrig Day and Nostalgia

Happy Days

Opera, Dreams, and Death

Closing

Construction Tips Appendix

Theory

Practice

Construction 101 - Function, Aesthetics, and Cost

Construction 101 - Codes

Construction 101 - Outlets

Ramps

Bathroom Modifications

Bedroom Modifications

Bird Drawings of Connie LaPerriere

Introduction

Acknowledgements

About the Author

Introduction

As my two cave diving partners and I began the long ascent out of the cave, I glanced down to see my depth gauge read 266 feet: over twice the safe sport diving depth. You may already be questioning my sanity, or be ready to call me an adrenaline junky. I have always loved living literally on the edge, so it would be hard for me to argue, especially about the crazy part. I said literally on the edge because more times than I can remember when climbing, I found myself on a lofty perch with nothing but air to my left or my right. There was little to keep me from cratering into the ground 2000 feet or more below. More than once, I’ve forced my body through such tight places in both dry and underwater caves that I’ve had to take my helmet off and push it ahead of me to fit. Am I totally bonkers? Maybe I am.

I’ve also been attracted to jobs that stimulate both my creativity and adrenaline production. Jobs like inspecting a 200-yard-long underwater tunnel that supplies water to a hydroelectric powerplant via scuba diving. Or scaling (prying) large rocks off a near-vertical cliff above a hydroelectric dam spillway while dangling from the end of a rope no bigger than my pinky finger. It’s darn fun while hanging at the end of such a rope to use the hydraulic jack to dislodge a rock as big as a minivan and see it tumble down a 50-foot cliff. I can also guarantee high adrenaline-flow when you’re standing on the edge of a dam while a helicopter with a 200-foot-long cable hanging under its belly brings you a trip bucket with a ton of concrete in it. One mistake by either the helicopter pilot or you, and you’d be smashed like a bug. One time I climbed a 200-foot radio tower in a windstorm to change the flashing red light on top. And another time I hauled windows for a house my company was building in the bed of my pickup on a remote island with no real roads? As I drove off the landing craft that was bobbing up and down in the surf, I wondered how I would explain the loss of my truck with several thousand dollars of windows to my insurance company. Fortunately, I didn’t have to, but I was packed full of adrenaline that day. Only 4-wheel drive and a dedicated crew saved the truck and possibly me from a watery grave when the truck’s back end fell off the ramp and landed in 3-feet of saltwater as I drove it back onto the landing craft.

I liked playing and working on the edge but never considered myself an adrenaline junky. Maybe I was? Now when my bulbar ALS causes me to choke and adrenaline starts flowing, it’s not much fun. When that happens, I am often overcome with the feeling of doom, and I panic. Not much fun at all. However, when the feeling of doom passes, I’m just as ecstatic to be alive as when I freed myself from being good and stuck during a cave dive.

See why I chose the title of Just Another Adventure for my first book about living with ALS? And why the second book is titled, The Adventure Continues? Knowing this is going to be my last book about living with ALS, I figured The Last Adventure fit. Both for the book title and living with ALS will be the last adventure I face while living. I’d rather be taking part in almost any other adventure than ALS, but I’ll do my best to face ALS as just another adventure.

The Construction Tips Appendix. My expertise designing, creating, repairing and constructing machinery and buildings has served me and my wife well since ALS has entered our lives. This appendix is based on posts I made about home modifications on various ALS support sites and a group page I started dedicated to handicap accessibility modifications.

There is nothing more important than staying positive while making the most of bad situations. A big part of staying happy and positive I owe to Connie, my wife. And since she makes me happy, I’m going to treat you to one of her many drawings that always makes me smile. This drawing hangs by our front door and as I get ready to go out into the world, as I struggle to change from my inside wheelchair to my outside wheelchair, I look up and smile at this happy drawing. Because we have a collection of her bird drawings, we’re including quite a few in the last section of this book.

Timeline

Essays

Classical Homework

16 June 2019

Last night, during intermission, our friend Bonnie Cottrell asked me if I’d ever written a story about why I like classical music. I shook my head no, and she told me I should. I gave her thumbs up that I would, and she then said, That’s your homework assignment. Well, in the days of my youth, I would have put that assignment off until the last second, but nowadays, I’m not particularly eager to procrastinate. So, here it goes.

I could be snarky and just type ‘I don’t know, I’ve always liked classical music." However, I’ll try to do a better job than that.

I can honestly say it wasn’t because of my parents. My mother died when I was seven, and I only remember her practicing on her organ for the music she was going to play in church. Sadly, I don’t know what kind of music she liked. But my father liked the music sung by the crooners of that era, the likes of Bing Crosby, Frank Sinatra, Dean Martin, John Gary, and Dennis Day. In fact, my middle name is Dennis because my dad loved his music.

You won’t find me saying many good things about my father, but one is that he was an excellent singer. He liked to learn all the songs that the crooners sung, especially the Irish songs like Toora Loora Loora, Danny Boy, Cockles and Mussels, and many more. To learn those songs, with all the proper pauses and inflections, he’d sometimes stand in front of the hi-fi stereo, and each time a song would end on the LP record, he’d place the needle back at the beginning of the song and start it over, sometimes singing along, sometimes not.

The first 45 RPM record I purchased was Gary Puckett and the Union Gap, singing Young Girl. And, I think it was the one and only rock and roll record I ever purchased. When I was fourteen and lived with my aunt and uncle for a bit over a year, my cousin, Charles, and I bought more than one Bill Cosby album, and we teens would sit around listing to them over and over again. We’d laugh at each funny line on the record, even though we’d heard the same joke more than once. We also listened to Casey Kasem on the radio counting down the Top 40 Hits of the Week.

As an older teen, when I went to live with my brother, Fred, and his wife, Kay, I don’t remember listening to a lot of music. When riding to and from work with Fred, mostly a half-hour to an hour each way depending on traffic, we’d mostly listen to the news on the AM radio. During that time I purchased my first LP record of Richard Strauss’ symphonies and a record of Beethoven’s 5th Symphony. Kay and I’d sometimes listen to those records and other classical music when Fred was working late. Kay would be baking or cooking dinner, and I’d be reading a book, most likely about a mountain climbing adventure. Maybe it was Kay who cemented my love of classical music? Even as a teenager I’d much rather listen to classical music than rock. When I got my first car, I had the first push selector tuned to a classical station and the others set to rock stations. When one of my friends was riding in the car with me, we’d listen to rock, but as soon as they were gone, I’d push that first button and go back to listen to classical. That was weird for a teen in the early ‘70s.

When Connie, who already loved classical music, and I were first dating, we were much too poor to afford a stereo or even a cheap record player for our first apartment in Nebraska. Heck, we couldn’t even afford a radio. We only listened to music when we were driving in our ragtop 1962 Jeep and the best we could find was country and western. We both hated what was commonly called shit kicking music. Once, we were extra excited when we heard that a music professor at Connie’s college was giving a free piano concert featuring pieces by Chopin. We were very disappointed when we found out that he couldn’t play the piano much better than a typical first-year piano student. And to make things worse, out of politeness his audience clapped, and he played two encores. That was the worst music experience of our lives.