ALS and the Impossibility of being “Normal”By Doug Wade
By Eric H. (Eric The Fun)
Hi Everyone! As you know, 98% of my blog is dedicated to celebrating and expressing the gratitude I have for my life before ALS (and even after ALS to some degree!) But I have to take a moment and let everyone know that things have degenerated to the point that I am having LOTS of trouble communicating with the world. ALS is a degenerative movement disorder, and that means that every movement I try to make from head to toe has gradually gotten worse and is continuing to decline every single week. That means that even if you saw me a few weeks or a month ago that things are absolutely NOT the same for me as they were then.
I also realize that 90% of my decline is not really visible to my friends and family, and that you guys are doing your damnedest to help me go out as “normally” as possible by not abandoning me and always offering to take me places, bringing me delicious meals (which I often do accept and truly love–Hahaha!), bring the gang over to visit, and all the things we used to have fun doing together. Many of you have expressed amazement that I actually still “look pretty good” for a guy with a degenerative, deadly disease, and I understand the cognitive dissonance involved. Hell, when I look in the mirror occasionally I can’t believe the guy looking back at me is really in such bad shape! I totally get it that I don’t really “look that bad,” and people tend to treat me as though I’m like anyone else in a wheelchair who can’t walk but can get by doing most other things at a somewhat functional level. I am very sad to say that is increasingly no longer the case.
It’s probably easiest to understand if I just make a list of how my various physical functions have declined over the past few months so everyone understands where I am, and that what I can or can’t isn’t based on my choice or my attitude or anything really too much within my control at this point. It is also essential to understand that ALS affects each victim differently and different physical functions decline at different rates. We’ve all seen photos and videos of ALS victims who can’t stand up but do the Ice Bucket Challenge fundraiser in a high-tech wheelchair and can speak clearly to the camera when they finish the race. We’ve also seen countless photos of Stephen Hawking communicating with his eye pad device at 3-5 words per minute because that’s the only part of his body that still moves!
Here’s where I’m at right now (and it gets worse every week) and what “works” for me and what doesn’t on all levels:
- Overall fatigue: I have literally lost 90% of my physical and mental energy. So when everyone says I “look pretty good” I appreciate the compliment, but it unfortunately doesn’t reflect reality. A 15-minute personal interaction can literally wear me out, and then I’m down for an hour nap at my desk. If I stretch the 15-minute visit to 30 or 60 by digging really deep into my limited energy, I’m often out of gas for the rest of the day.
- Walking: I can still move around my house about 50 steps at a time with my walker and stand for about 2-3 minutes before the low back pain and muscle spasms in my legs, complete lack of balance, and overall physical weakness will send me to the ground. But I can’t navigate other spaces outside my home, and going to the bathroom without personal help is simply impossible now outside my one specially engineered home rest room. (Thank you, Peter!!!!) And my walking ability is quickly going south as well. In a matter of weeks, I think it will be gone for good…
- Pain: The gist of ALS is that the motor neurons in your brain never rest and they keep many muscles in your body in a state of constant spasm. And I mean constant, as in 24/7–It’s not like an occasional Charlie Horse that we’ve all experienced form time to time. Naturally this causes considerable pain depending on which part of the body is being affected, and for me the worst areas are my low back (I herniated my L5 years ago, so that’s a weak spot), my right shoulder, my right hand and my right leg from hip to toe. My right foot and hand feel like claws a lot of the time when the spasms really hit hard. The left side hurts too but it isn’t as bad. ALS usually favors one side for some reason. And the constant muscle spasms are what gradually make your muscles weaker and eventually useless. Contrary to popular belief, working out in the gym does not build muscle–The actual workout breaks it down. The building and strengthening comes when you rest the muscle in between workouts. And with ALS the muscles never rest so they just keep breaking down until they are too weak to move.
- Talking: My speaking ability has declined very rapidly the past few months to the point that I can’t talk on the phone at all, and I can barely squeeze out a few possibly understandable words in person. And after making the attempt, I’m fairly breathless and tired. Psychologically and emotionally, this has been the most difficult thing for me. Everyone wants to come and visit me, but if I can’t hold a conversation, it’s literally torture to sit in a room full of my friends and be left mute. I know everyone tries to include me and jokes that “they can do all of the talking,” but that situation is incredibly depressing for me. That’s one of the reasons I wrote the blog because I knew it would come to this, and I tried to get as much important conversation out there on my side before I went mute, which I effectively am now. And spitting out 10 words at a time and being left breathless does not qualify as a “conversation” for me. I’m effectively mute now, and that’s not fun…
- Hypersensitivity to sound: Most of ALS affects the motor neurons (not the sensory neurons) and therefore affects movement, but I’m also hypersensitive to sound in particular. A few people having a good time talking nearby is overwhelming to my senses and makes me pretty uncomfortable after only a few minutes. My body literally jumps involuntarily when Dana my caregiver makes a noise in the kitchen sink or something loud happens outside in the street.
- Eating and Drinking: It’s getting nearly impossible to hold a fork for more than a few minutes at a time, and if I don’t focus 100% of my mind on chewing and swallowing, I will end up choking on food and drink that my muscles will have a very difficult time expelling from my throat. And once I’m aspirating food, I’m really fucked. So a seemingly casual sit-down meal at my house is actually the equivalent of a 5K run. I’m typically quite tired and even breathless after eating a regular meal.
- Typing and Texting: Because of the increasingly intense muscle spasms and weakness in my hands and arms, I’m also getting to the point where it’s increasingly difficult to type and text, so I’ve got very little time left to say anything I want to say in this world. It’s not that I don’t want to visit with people, but if I can no longer communicate with anyone by speaking, I’m in essence forced by my condition to communicate by typing for now until that goes completely south as well. The other advantage of the blog or a group email (I have several groups of friends who communicate with me that way) is that it allows me to communicate with everyone at once with my extremely limited energy. And I can do it when I have a few moments of energy to respond, which is not necessarily when everyone is at my house and wants to talk.
As much as all of that sucks, I hope everyone understands that it’s not you, it’s me. I knew it would come to this many months ago as I felt my physical body declining every week, and I hung in there as long as I could. I’m a member of an ALS support group and I’ve watched the decline happen to my fellow victims in various ways, but it always happens. Hell–It’s not like I didn’t want to enjoy the last part of my life as much as possible, and I honestly kept doing everything I could right up until I absolutely couldn’t anymore. I worked, drove around town, went to the gym, dated beautiful women (wink!), and hung out with all for you as much as I could until I absolutely ran out of gas. I spent a lot of time, energy and money dealing with the medical aspects of my disease as well. If you want a more detailed version of where I spent my energy over the past year, read the rather lengthy “From Fitness to Fighting to Fucked” entry.
This entry is really just an update on how things have regressed from there. Please also know that I’ve spent a lot of energy on business and financial stuff to make sure my parents are taken care of and that I don’t leave a financial shit show behind for anyone to deal with. And the medical industry is doing its level best to make sure that it can steal every possible dime from me whether I’m dead or alive. I get constant bullshit from them in the mail, on the phone and in email about money I don’t really owe, and I try not to spend any of my limited time on that. I may write about those scamming, lying sacks in a separate post if I think it’s worth any of my remaining energy (and it probably isn’t!)
All that said (and I had planned on this being a short post, but you know Eric the blabber!), I wish things were different, but I’m a realist who is doing his best to accept the shitty reality that has come my way. Just wanted to let everyone know I appreciate your love and positive vibes and need to be honest with you about where I am in reality.
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About The Author
I’m a visionary, a dreamer, a futurist with a plan. President & CEO of PureSocial.