Wednesday, July 9, 2014

Public Perception

I need to preface this post by saying that I have nothing but love and respect for anyone living through ALS, along with their caregivers, friends, family and medical support staff.

An interesting point arose during a discussion at my clinic visit last week.

We discussed ALS awareness. Particularly, the public face of the illness as projected by national organizations.

These days, Lou Gehrig's disease, at a national level, is synonymous with names  like OJ Brigance, Steve Gleason,  Augie Nieto, and Mike Porcaro. To their eternal credit, each one has taken it upon themselves to start organizations and campaigns to battle ALS.

What do I have to complain about?

My complaint isn't with their popularity or their wealth.

I take issue with the fact that their wealth affords them the ability to have - in the eyes of public - a very functional life, while their ALS is at a fairly advanced stage.

I think this exudes a false image of ALS. An image that portrays pALS at an advanced stage of ALS like independent, pseudo-fully functional people: active business-people, well-traveled advocates...etc...

Again, there's nothing wrong with pALS being active.

But I feel ALS should be portrayed in a much more honest light. A darker light.

People need to have a much more realistic idea of what its like to live with live through ALS.

Know that ALS robs you of everything.

It turns your spouse, partner, soul-mate, lover, and best friend in to your nurse. Every bodily function eventually becomes dependent on someone else for assistance. Fuck, it turns your friends and family in to caregivers and victims in equal measure.

When I was first diagnosed, Amanda and I asked the doctor about treatment options. He told us that The Serenity Prayer was the best advice he could give. The serenity prayer.

I couldn't tell you when I began requiring help to get out of bed. But now I need help getting in to bed. That's right; I cant even fall in to bed without help.

I can't move the bed-sheets under my own strength, so I have to wake Amanda for help.

I require hands-on help to stand, shuffle, and sit.

Know that when I fall down it takes a mechanized lift to scoop me up.

Know that every aspect of my personal hygiene is performed by someone else: brushing my teeth, showering, wiping my nose, wiping my ass, cutting my nails, name it, and someone has to physically do it for me.

Someone else has to feed me. Someone else has to give me a drink.

I couldn't tell you the last time I put an item of clothing on by myself.

I need a machine to continually pump air in to my lungs while I  sleep.

Keep in mind that with one exception, there are no treatments being researched, let alone developed for this disease.

Going anywhere is a monumental undertaking.

I have a feeding tube sticking out of me, to help me maintain a healthy weight.

I can't move my arms.

I'm losing the strength to hold up my head.

I've lost control of my bladder because of spasms.

I recently shit my pants. My wife  and sister-in-law had the pleasure of cleaning that up. Good times.

My ability to breathe will diminish to the point that doctors will recommend a tracheotomy, and that I get connected to a ventilator. I'll decline that recommendation. I don't want to be hooked up to a machine to merely survive.

My daughters, 6 and 3, are active caregivers...they're also the reason I get up everyday.

My breathing will slowly fail to the point that carbon dioxide levels will become intolerable, I'll lose consciousness, and die. Or I'll fall, and die from the resulting injuries. But my mental faculties will remain intact throughout.


Remember, better yet, understand that yes, ALS patients strive to lead active lives, but don't let that veneer give you the misconception that ALS is anything but a brutal disease.


  1. We have all wondered how we would act in a foxhole. You are in one now Tony and you are displaying courage and integrity. You are a credit to your family.
    I can only hope that, when my turn to die comes, I can face it with such steel.

  2. Tony thank you for this post,my knowledge of this disease is limited but the honesty and openness in your post helps in understanding the hour to hour ,day to day
    living with ALS. All the best to you and yours....


  3. You're right that people's image of ALS is of a brave man making a great speech in Yankee Stadium; a man standing tall, not a man who can't even lie down to rest. I was one of those people before your diagnosis.

    I can't imagine how you and Amanda are making the decisions you have to make right now but I know that you stand strong together because you make them together. I agree with the course you've set - I can see your mind is still crystal clear. You are a man trying to keep your dignity, fighting a disease that hurls new indignities at you daily.

    Tonight, before I read your post, I pulled my Conway Cup T-shirt out to wear to bed tonight. Probably random chance, but tonight my wife and I needed to talk about a lump in her breast that will be biopsied tomorrow. We prayed and I assured her that this will provide information so that we'll know how to take the next step. We talked about how much we love our kids and that in my heart she's not going anywhere and we're just going to rule it out because the doctor is doing his job. I helped her be calm and helped her to sleep.

    Now I can't sleep and I am carrying a fraction of the weight that Amanda carries every day when she helps you to sleep. She knows exactly what is ahead, just not when. She is your woman of steel. I pray for your family tonight as I pray for mine.

    I am angry with you. I am crying with you. It is too cruel a disease and it needs a cure.

    Whatever life throws at us we need to follow your mantra: Don't shrink. If you can fight through this and not shrink in the face of it, we need to do the same when we face our challenges.

    Amanda, I hope you get some sleep, some nights.

    Tony, keep waking up for those precious girls ... and your woman of steel.

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    2. Thanks Kevin. Good luck with the biopsy.

    3. Biopsy brought good news: infection, yes, cancer NO. I continue to pray for you and your family.

      P.S. My son Brian, 9, and daughter Lydia (will turn 7 on July 20) are out at Coach Ross's camp at VMI this week and are loving it. He's working them hard and they're learning a lot.

      I'll coach Lydia in RARO this fall and in the spring I'll be starting a U7/U8 girls academy program through Rockbridge United Soccer Club. I'd love to get Cora involved if I can help Amanda make it happen.

      P.P.S. Happy B-day to Louise! 3 is a great age!

  4. Thank you Tony for putting the REAL impact of ALS, especially as it has progressed, into words. Most people never know, or even see, an ALS sufferer, let alone have an opportunity to closely witness its effects. The example you, Amanda, the girls, and your families, have set is inspirational beyond measure. Tom M.

  5. I'm just so heartbroken for all of you, that I can't put it into words. All I can do is offer my love and prayers.

  6. Tony, love you man. Your honesty and direct nature is something I have admired in you since you were a rat. I love that you have not changed in that regard. You and your family are what real love is. Thanks for the post. Stephen

  7. Yep, I am at exactly similar state as you. Yes it is a really dignity robbing disease . I take my hat off to my carer and wife. Love to the family

  8. Hi Tony
    I don't know if you remember me, we were at Aldryngton and Maiden Erlegh together, I was Kirsten Davis, now Disley, married to Paul. I read your blog after it was shared by Michelle Donkor.
    I wanted you to know how much I admire your courage, honesty and clearly unselfish love that you have for your girls. I understand a fraction of what you are going through as my dad had MS with some very similar sounding symptoms. Your disease sound horrendous, something that would have broken most people but you speak with such bravery. Take care and may the force be with you. Sending you and your family love

  9. Hi Tony,

    I just came back from holiday last night and read your tremendously brave and honest howl against the unfairness invading your life and that of your family.

    There are vicious circles involved in this. The profile of the disease needs to be raised in order to attract and maintain funding. The famous people you listed will always be used to raise that profile and that, in turn, leads to a false perception of just how devastating and demeaning it can be to remain cognitively intact but physically diminished. It is a "buried alive" form of terror.

    I can offer weak words of sympathy for your strength and that of your friends and helpers but the main effort must be to get more research into this little understood condition. I hope the profile of your own dignity , AND your cantankerousness, resentfulness and righteous indignation, under this condition, can help re-dress some of this perception problem from having famous and healthier people "representing" the condition.

    Meanwhile, for what its worth, you all have my admiration, respect, love and sympathy for all you are going through.

    May you continue to show strength and bravery when that is appropriate and other emotions when they are necessary too.