My Life With ALS (A work in progress…)

My name is Thomas W. Ohlson and I have ALS. There, I have finally gotten the ball rolling. I have been lying in bed night after night for over a year now, trying to figure out how to start this whole thing. I finally decided to take a cue from Alcoholics Anonymous and just keep it simple. After all, does anyone break the ice better (or anything else for that matter) than a drunk?

Why the “proper” name? Because that is how it appears on all those pompous business cards I’ve had printed up over the years. Much more important than my name was the significant-sounding title placed under it, often accompanied by some grandiose seal or “Department” description, signifying that I was a man of great importance. I guess that pretty much sums up my personality, at least as far as how I conducted myself professionally. Be important. If you can’t be important, at least look important. My creed–“If you can’t dazzle them with brilliance, baffle them with bullshit!” Those who really know me best recognize the BS far outweighs the brilliance and just call me Tom.

They say that nothing is certain in this world but death and taxes. I’m not sure who THEY are, but THEY have excellent PR (THEY are everywhere) and apparently THEY also have very good sources. Leona Helmsley, Willie Nelson, and that flabby, naked guy from “Survivor” tried to disprove that part about taxes and look where that got them. As for that part about death, I’m now finding out the hard way that THEY probably got that part right also…

…ALS is the acronym for Amyotrophic Lateral Sclerosis, otherwise known as Lou Gehrig’s Disease. Of course, in Europe, disdain for most things with an American moniker has them calling it MND, or Motor Neurone Disease. Yes, my spellchecker is also underlining Neurone. It appears our English brethren never received Teddy Roosevelt’s memo about dropping all of the unnecessary vowels in the English language. This is what makes us American, in more ways than one. Regardless of the name, the disease sucks. For sure, there are worse diseases and medical conditions out there. Certainly, there are more prolific diseases that affect more people. However, if there were an annual competition among all the diseases for sheer nastiness, ALS would make the playoffs every year.

In ALS, the motor neurons die, which in turn causes the muscles to waste away. For the most part, your senses, cognitive abilities, bowel, bladder, and sexual functions all remain intact, but the rest of your body wastes away until you are pretty much a complete vegetable. As an example, you can smell the food near you, see and hear the fly buzzing around the food, feel the fly when he lands on you, and even taste the little bastard when he flies into your gaping, drooling mouth. Because you still have all of your mental faculties, you are really pissed that you can’t do anything about that damned fly. To add to your frustration, you’re also very horny. The disease hasn’t affected your sexual desire or function, but because you now have the mobility of a potted plant, you can’t do anything about it. Even if someone took mercy on your condition, you are probably no longer in the mood because you can’t get the taste of that cursed fly out of your mouth!

The life expectancy for PALS (Persons or Patients with ALS) is 2-5 years. Eventually, the disease affects the diaphragm (the muscle responsible for respiration) and the person slowly suffocates to death. A person can opt for a tracheotomy and then use a mechanical ventilator to breathe, but less than 5% of PALS choose this option. Theoretically, the ventilator can prolong life indefinitely, but the patient requires around the clock monitoring and care. Most PALS cite finances, family burden, and/or diminishing quality of life as their reasons for choosing not to vent. My sister the nurse once joked with me that at least my sphincter will continue to work to which I responded, “Yes, but what good will that do me when I can’t move or tell anyone that I have to take a dump?” To many PALS, going on a vent would only prolong the agony as we continue our march toward membership in the plant kingdom. ALS never improves, rarely plateaus for more than a brief period, and always eventually progresses. There is no viable treatment and no cure.  For reasons still unknown, military members and veterans have a 60% higher chance of getting ALS than the general population.  Certain athletes such as professional football and soccer players are also disproportionably effected.

I received my initial diagnosis of ALS from the Lou Gehrig Center at Columbia-Presbyterian Hospital in New York City, named for the famous Yankee baseball player who was struck down by the disease, while still in his thirties and at the height of his remarkable career. In the 70 years since Gehrig gave his famous “Luckiest Man on the Face of the Earth” speech, medical science has come up with only one lame-ass treatment for ALS–a drug called Riluzole, which may increase survival by approximately 3 months. 3 months! Many PALS start the drug at the insistence of their physicians, but they often discontinue treatment after experiencing side effects such as nausea and fatigue, not to mention the strain on their livers. Pretty sad that in the past 70 years we have seen the advent of nuclear technology, artificial intelligence, space exploration, and pet rocks, but the medical establishment still has no clue what causes ALS or what to do about it.

Yet, hope springs eternal. Every morning, myself and countless other PALS jump out of bed and run to our computers or TVs to see what miracle awaits us from the medical community. Let me correct myself. What I meant to say was that every morning, myself and countless other PALS are lifted out of bed and are rolled in front of our computers or TVs to receive the good news. Like the movie “Groundhog Day,” this scene often repeats itself day after day, until the one day you just can no longer get out of bed.

Unfortunately, PALS are caught between a proverbial rock and a hard place. As previously mentioned, the mainstream medical community has offered up little in the way of treatments or cures. To many of us, the FDA appears to be little more than the epitome of government bureaucracy–pandering to the big pharmaceutical companies and stonewalling or ignoring any possible treatments coming from outside their establishment. One would think that there would be at least be some new drug or treatment in the pipeline. Nothing. Thus, PALS are left looking at less conventional alternatives. Stem cells have been getting a lot of press the last few years and may, some day, live up to their promise. However, despite any verifiable evidence, they are currently being touted as a cure for just about anything from ALS to acne at clinics and “hospitals” from Mexico to China, and everywhere in between. PALS and patients with other terminal and chronic conditions are shelling out tens of thousands of dollars and traveling to these supposed clinics and subjecting their bodies to experimental and often dangerous procedures, usually with negligible, if any results. Such is the desperation of our situation. Is it any wonder then, why PALS are often at the forefront of any issue involving euthanasia or assisted suicide?

21 Responses to My Life With ALS (A work in progress…)

  1. Brian Dillon says:

    Bravo Tom.
    Well written.
    I look forward to your updates.
    Keep fighting, do not surrender.

    You are in my thoughts.
    Sincerely,
    ALS-Fighter, Brian Dillon (11/03/2010)

  2. Deb Safra Glovsky says:

    Tom, you are truly an inspiration. You WERE ALWAYS the “important” one in high school. You lived your motto even then. My thoughts are not only with you but with your wife and children. Keep up the strength.

  3. Michelle Drill Boone says:

    Tom,
    All I can say is wow! This is such a great way too educate people about the disease and the Bull Sh** that goes on with research/ funding. Not to mention you! (: hang in there…this is awesome…!

    Michelle

  4. twohlson says:

    Thanks Michele, that means alot!

  5. Steve says:

    Great description for increased awareness Tom, keep writing!

  6. Jim says:

    Tom, bravo. i am a caregiver to my wife Debbie, also a victim of ALS. your statements are a bullseye. i particularly love the ending statements of replies such as Stay well, hang in there(unless the referral is to the hoyer lift), and Keep up the strength. if possible die with digity.

    Jim

  7. twohlson says:

    Thanks Jim! Give Debbie my best–I won’t say hang in there, as your Hoyer comment still has me laughing!

  8. Kim says:

    Tom, this is so well to the point. I am Debbie and Jim’s niece. I never dreamed I would have a family member with this horrible disease. I myself am a nurse and it just goes to show ALS has no boundries. Thank you so much for putting this in words! I pray everyday that there will be a cure found!—-Kim

  9. twohlson says:

    Thank you, Kim! Look after your Aunt and Uncle–you can never give them too much support.

  10. Ingrid Robbins says:

    Dear Tom –

    You are just one fabulous human being, not having lost one iota of your irreverent sense of humor in the face of this incredibly horrible disease. Your valiant fight against ALS should be joined by all of your friends and colleagues and, in fact, the world at large — in giving financial and emotional support towards the most intense medical research against this plague. God bless you and your lovely family!!

    Ingrid

  11. Jesse says:

    Hey Tom,

    I really like your writing and style of storytelling. You really paint a clear, no BS picture of what it must be like living with ALS. I hope our film and Jason’s story can make a difference somehow.

    Keep on keepin’ on and thank you again.

    -Jesse-

  12. twohlson says:

    Thanks so much, Jesse! One team, one fight! I am going to share Jason’s link on FB… as I listen to “End Of The Beginning!”

  13. Jim Hamby says:

    Tom,
    Well done! You are truly a gifted author. I enjoyed reading it but it is definitely bittersweet as I wish you weren’t speaking about yourself. Since we reconnected recently, I have been reading about ALS and have seen no better candid description. Thank you for sharing, my friend! Hang in there –Go NOLES! Jim

    • twohlson says:

      Thank you very much, Jim! It was something I was encouraged to do to help raise awareness. This blog only gets a small fraction of the attention my Facebook Journal (same content) gets, but every little bit helps. Be well, my friend!

  14. Wow, fantastic blog layout! How long have you
    been blogging for? you made blogging look easy.
    The overall look of your website is great, as well as the content!

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