Sharon has ALS

If you knew Sharon, don’t read this post — it will just upset you.  But if you didn’t know Sharon, and you’re just trying to understand how death comes to an ALS patient, then read on.

Sharon died from ALS on July 31, 2011. In the months prior to her death I had tried to get an understanding of how someone with ALS would die.  I wanted to know because I wanted to prepare for what was going to happen to her, just as I tried to prepare for everything else in Sharon’s ALS decline.

The only article I found on death from ALS said that it was peaceful and quiet: the patient just gradually sleeps more and more as carbon dioxide builds up in the patient’s system.  Then the patient goes to sleep at some point and doesn’t wake up.

The reality is very different. Continue reading “Death from ALS — It May Not Be as Peaceful As You’d Like” »

Sharon passed away July 31st, 2011.  I’m still trying to get over her death but when I’ve got my head together a little more I plan to come back and fill in the gaps on this web site.  As it stands, my last real blog entry was from December, 2010.  After that, Sharon’s symptoms escalated, and I found myself very much caught up in the emotion of taking care of Sharon.  I kept a journal but I considered it too raw to publish it on the Internet, and I wasn’t able to devote enough time to give this web site the time and energy that it deserves.

So please be patient, and check back every now and then to see if there’s anything new on this site.  Or if you prefer, you can use the FeedBurner subscribe link, and you can receive an email when updates are made.  When you see changes, you’ll see them gradually — I won’t add a whole bunch of new pages all at once.

If you’re an ALS patient or a caregiver for an ALS patient, then you have my utmost sympathy.  Living with ALS demands a special type of courage, and caring for someone with ALS requires a different, but equally admirable, type of courage.

The decline in strength of an ALS patient is continuous, but not consistent. There are good days and bad days, good times of the day and bad times of the day. In certain cases, this can cause some interesting conflicts between patient and caregiver.

Sharon is at that point in her decline where she can sometimes lift herself up from a seated position, and sometimes not. In all cases she needs help — she can’t lift herself up without someone supporting her under her arms. But in many cases that support isn’t enough: her knees won’t lock, and so her legs give way when she tries to stand. She also has continued trouble with her left ankle: it rolls over on her, turning sideways and shifting her weight onto the side of her left foot instead of the sole.

Often it takes more than a few attempts to get Sharon upright from a seated position. The trick is to help her up without letting her fall during the failed attempts. It’s frustrating for me. I know that she wants to be strong and use her abilities as long as she has them, but at the same time it seems futile for her to try over and over to do something that she is failing at.

I guess in some sense she’s not just fighting to stand up — she’s fighting against the disease. If she gives up and lets me use the patient lift then she’s essentially letting the disease win. It’s a matter of honor with her. Every concession is a retreat on the battlefield. Every failure is an acknowledgement that the disease is slowly killing her.

I sometimes criticize Sharon’s behavior, telling her, “Attempting the same thing over and over and expecting a different result is insanity.” But I’m ashamed of my words. I understand her commitment to fight off the disease, and as frustrating as her actions are in the short term, I absolutely believe that she’s right to be fighting.

And so on the good days and in the good times I try to help her stand up. And on the bad days and in the bad times I use the patient lift. I just wish the bad times wouldn’t so often correspond to the bad times in my own day. It’s tough to agree with Sharon’s keep-trying-over-and-over approach when it’s the end of the day and I’m so tired I can hardly stand up myself.  But as frustrating as it is, it’s what I need to do.   Sharon is right: she has to stand up as long as she can.

It’s Thanksgiving Day, and I’m writing this at 6:30 AM.  I often get up around 6:00 AM to give me an hour or so of solitary time before Sharon awakens at around 7:30 AM and the hectic morning starts.

I said something to Sharon the other day about how much I miss “alone time” — time in which I can just sit in the silence and think or write.  She said, “Don’t worry.  You’ll have all the alone time you want soon enough.”  Unfortunately she’s right.  Every minute I have with her right now is a treasure — even the moments when it seems like such a struggle to cope with her needs.

On this Thanksgiving, I’m thankful that Sharon is still alive, and that she’s able to communicate with me so easily.  The word “easily” probably seems absurd to some people.  After all, Sharon communicates by having to type every word on a keyboard.  When she plays her words back to me she uses facial expressions to add emphasis and emotional impact, so I’ll understand the nuances of her computerized voice.  It’s very mechanical, yet the communication is effective.

And I guess in some sense the communication between us is more effective than the communication between a lot of “normal” people.  Sharon seldom blurts out things she regrets.  She always has a few seconds to self-censor the really hateful things that people sometimes say to a loved one in the heat of the moment.  We get along pretty well.

So on this Thanksgiving, before we spend hours getting ready to see family, before the chaos of a huge Thanksgiving dinner that Sharon will struggle to eat, I’ll express my thanks for my wonderful wife.  I love this woman, and ALS can’t do anything to change that.

Given Sharon’s current condition, transfers are my biggest problem; it’s difficult to move Sharon from one place to another.  There are certain situations that are everyday occurrences for most people but a nightmare for people with ALS.

Just a few minutes ago I was helping Sharon move into the shower.  She was sitting on the toilet, which is right next to a walk-in shower, and she wanted to move to a shower seat that was in the shower stall.  This is how Sharon is currently taking a shower: she sits on the shower seat and uses a handheld shower head to rinse herself down, then she uses body wash to clean herself, then she uses the shower head again to rinse.

That sounds reasonable, but the difficulty is getting Sharon into and out of the shower.  There’s Continue reading “Transfers are Hell” »

When you’re unfamiliar with ALS, you tend to think of the need for a wheelchair as a sudden thing: one day you don’t need a wheelchair, and the next day you do.  The reality for an ALS patient is far different.  Sharon has had a wheelchair for several months, but she has tended to use it just when we leave the house.  Inside our home, Sharon has used a four-wheel walker.  She moves slowly with the walker — sometimes taking ten minutes to move from one room to the next — but she feels strongly that she ought to try to walk if she’s still capable.  It’s almost as if she is savoring every step until the time when she can’t walk again.

In the last week Sharon has had increasing difficulty using the walker.  It’s not the walker itself that gives her trouble Continue reading “More and More Use of a Wheelchair” »

My wife, Sharon, has ALS.  ALS stands for Amyotrophic lateral sclerosis, which is too hard to remember or say, so everyone just calls it ALS.  It’s also known as Lou Gehrig’s disease after the baseball player who was the first famous person to have ALS.

If you had to pick a disease to get, ALS would be the last one you’d choose.  The general symptom is that your brain loses communication with your muscles, just as if your nerves have been cut.  You gradually lose control over various parts of your body: your feet, your legs, your arms, your hands, your tongue, your mouth.  Eventually you lose control over your chest muscles, and you’re unable to breathe without a ventilator.

ALS is like being trapped in a tomb with no way to get out.  Your mind remains sharp, and in your head everything seems perfectly normal.  But when your brain tries to tell various parts of your body to do something, it’s as if no one is listening.  It’s a cry in the dark.

There are different types of ALS, and even within a type, it affects different people in different ways.  Continue reading “Introduction” »