Monthly Archives: June 2017

The Brutal Reality that is ALS

The Brutal Reality (cont.)

In my last post I mentioned that I was starting to turn things around in a positive way, with less pain, better sleep, etc.. Then, right after the post, the bottom dropped out (or more like spun out).  One day, after Elizabeth sat me on the side of the bed, the world starts spinning and I mean spinning! It felt like I was on the world’s fastest merry-go-around! I quickly got Elizabeth’s attention and told her to lie me down. After a minute, the spinning stopped. I felt sick and dizzy just like I did after a fast spinning playground ride as a child. I have to admit my thrill seeking side started to surface as I thought  “that was pretty cool”. I knew deep down though, that I had vertigo and this could be a permanent problem. How did I know? My Dad suffers from it and deals with it on a regular basis. It was serious and I was bummed knowing that this could be a long term, or even permanent condition. I was aghast that this could be added to our plate. I must admit that I cursed the heavens (with teary eyes) wondering what else could come our way. All the cursing must have paid off because, after a week, the vertigo subsided and we realized how lucky we were not have to deal with that constantly!

Well we have had a good summer so far here at AirK&E. We’ve had visitors galore, active dogs running in and out, construction and healthcare workers coming and going. I did suffer from pneumonia in June, but quickly recovered within a week. I have been sleeping much better and for the most part eliminated the pinched nerve in my neck. A killer cortisone shot to my shoulder has given me a pain free week (thanks to God sent Dr. Arena) and it allowed me to go surprise Kyle in Boston, yesterday, for his 25th birthday! I spend most of my time writing (a lot of thank you notes), reading, listening to music (loudly and to the protest of my housemates) and watching the grass grow from one of the various porches outside our house.

I want to thank everyone for your continued support. All the cards and letters and messages (especially my friends in Michigan : Tammy, Rick, Steve, Tim, Andy, Boog) and everybody else who has dropped me a message. You are inspiring me to stick this out and to not give up. It’s humbling. Thank you.

kiss from elle


When my friends and family first approached me about creating this website, I agreed to do it with one stipulation, that I wasn’t responsible for its content, or writing. I am an awful writer. So, after a few years of it up and running, look who’s responsible for the content and writing. Like they say, “Father always knows best”, or has foresight for that matter. :-)

So we survived a long, cold winter and spring. and it wasn’t easy. People are always asking me how I am doing? I always respond with “great”, because I consider it rude to talk, or complain about one’s health. In all honesty, it hasn’t been so “great”.  It has been really bad. I have decided to lay it all out there, because so many of you want to know why I am not always up for a visit, or visitors for extra lengths of time. Here is why.

I can barely eat. My tongue is too weak to move food. The same goes for my throat. Choking and coughing up food are constant. Meals take forever and usually end when I get bored, or whoever’s feeding me gets bored. I go to bed hungry many nights. My clothes do not fit anymore. Much of this is my fault as I chose to not have a feeding tube.

Drinking is equally problematic. I usually drink from the right side of my mouth. It then comes out of my partially paralyzed left side (kind of funny if it weren’t so sad). Yesterday, I couldn’t satisfy my thirst. Sucks.

I’m so thin that sometimes, when I look at myself I get sick to my stomach. Despite all of this, I am constantly being lectured on my non-vegan diet.  😉

I pee once a day, poop once a week. No kidding!

Pain is constant. At one point this winter, I had multiple ingrown toenails, awful carpel tunnel pain in both hands, a pinched nerve in my neck and debilitating shoulder pain, so bad, I considered amputation. All at the same time. I was on more morphine than any of my docs and pharmacists have ever seen anyone on.

I have constant weeping eyes due to a chronic eye disease.

I can barely hold my head up. My neck is becoming too weak to support it.

I haven’t slept through the night in 3 years due to pain, discomfort and now hunger.  Elizabeth has definitely slept less than I have.

Excess saliva is constant. I have a suction machine and medication, but at times you’ll find me drooling on myself like an old person, or baby, your choice.

I forgot to mention… that I can no longer speak. If I don’t say “thank you”, it’s because I can’t.

You may think I am just feeling sorry for myself. Not true. I’m just trying to explain why I’m sometimes grumpy and  why I might not be up for a short visit, or a two week houseguest(s). I love your children, but I don’t feel comfortable with them staring at me and I don’t want them seeing me this way. I don’t want to be remembered like this. A little girl the other day buried her face in her father’s shoulder so she wouldn’t have to look at me. I have way too much pride, it’s hard.

There is some positive news. With some changes to: the way I transfer, my diet (no dairy) and my bed, I have managed to eliminate much of the chronic pain I have been experiencing the last couple of years. I’ve cut my morphine intake in half. This has just occurred. Great news as I have been sleeping so much better the last week, or so!

Hopefully, I didn’t offend or piss anyone off with this post. That wasn’t the intent. I wanted people to have a better insight of what I have been dealing with, not to mention what my family is having to deal with. ALS is a brutal disease. It certainly hasn’t spared us thus far. Now excuse me while I go get Gabby, I have snot running down my nose and into my mouth. No lie! :-)



Sallie Newton

I love Sallie Newton. She (with a little help from her husband Scott ) raised three amazing boys. Everyone in town knows her (many call her the mayor). Since I’ve been sick she has cooked for me countless times, baked for me even more. She hates ALS. Today, she ran ten miles for me. Thank you Sallie, I will forever be grateful for you kindness and devotion.