Saturday, 11 March 2017

Light At The End Of The Tunnel

I hate trying to describe the state of my strength in a blog post or in a comment to someone. Often the response is something to the effect of "you're still stronger than I am" or "you still get along well". This kind of feedback completely denies what I am trying to express, what this illness is doing to me. I want to talk about hand strength today. Remember, this is not a comparison with anyone else. It is a comparison with myself, from six months ago until today.

ALS has been roaring through my upper body for the last year or so, most notably since last August. My core muscles are virtually unusable these days; I need to be braced to sit up for any length of time. I tip over easily, so I am constantly seeking a hand-hold to stabilize myself. While my diaphragm is working, I now run out of breath after a mere moment of effort at something strenuous. Picking something up from the floor requires tremendous effort, not just to get down there but to get back up again. Thank goodness for the grabby sticks; I am using them more and more these days.

As to my shoulders and arms, I am noticing big changes in my hands of late. It's not that they are weak, per se. It's that they are not as strong as they used to be. They ache with almost every use. Even the simplest things are getting to be difficult. A cup of coffee seems heavier than ever. I cannot put the large bleach jug in my backpack for doing laundry so I transfer it to a smaller jug. The same with vinegar; buy large and transfer. I don't actually even do the transfer that often. Usually it's Home Care or a visitor who does this for me.

I can no longer pick up a box of full wine bottles although I can still pick up a box of empties, barely. Rather than pick them up, I sort of drag them up my legs and onto my knees, hoping the box doesn't tear along the way. I know have quite the collection of wine boxes with torn corners. Even the quilts and sheets on my bed are becoming too heavy to move at a single fling. Who would think of a bed quilt as being too heavy to move? Me, these days.

The toughest part, I suppose, is the constant ache and pain. My hands hurt. My fingers ache. My shoulder has this stabbing pain in the muscles near my bicep. Even my dead parts ache. My legs stiffen up overnight. Gas builds up behind my knee cap, making it severely painful to move it for the first time in the day. My poor, swollen, purple feet sting with paresthesia, that burning, prickling sensation you get sometimes when your foot falls asleep. Mine feels like that pretty much all the time.

All in all, it still pretty much sucks to be me. The only thing I have going for me is friends, family, and caregivers. I'm not done yet, but I am pretty sure the light at the end of this tunnel is not the sun.


  1. My impression is that people are wanting to be positive and encouraging and think this type of comment is the means of doing so. "You look great!" is another one. It upsets me, even though I know it comes from a good place.
    Comparing you to others is out and out denial of your own struggles. That's a real bummer. I sincerely hope you have some people in your life who are willing to listen and don't feel the need to negate your experience as a way to make themselves feel more comfortable or as a misguided way to try to cheer you up.

    End note- I am so sorry you are experiencing such a relentless and exhausting marathon. It does suck. Daily reminders of degeneration and loss is disheartening.

  2. I think it was your last vlog post when I noticed a significant change in your breathing. It caught me off guard, because you always overcome these crazy situations you describe. You persist. You are tenacious. I cried for you... I thought you could 'beat' this somehow. Someway. Someone has to be the first person to beat this. Why not you? I hate that this cruel disease is taking your life, a little every day. When I read your blog every day, I tense up, wondering what loss you will identify today. I so wish I lived nearby to help you, and I worry about who will be 'there' for you when you can no longer live alone. You have so many who read your blog and probably feel the same, but don't voice it. We get it Richard. We may not know how to express our concern, our grief... but we get it. With Love from Oregon.