My ALS progression may be slow and the changes I notice may be quite small at this time, but they’re there. Subtle or not, I am aware of the changes.
A small change that makes me sad is losing what remained of my speech. I keep trying. But it’s really gone. I miss it most at the times when having a communication aid handy is not possible: during transfers, in the shower, riding in the van. It’s frustrating both to me and to whoever is with me. Sometimes I can make a mental note and share the thought later. This does not work, however, when we are driving somewhere and we turn a corner causing my right hand to slip off my power chair’s armrest and now a finger is pinched painfully against the controls and my wrist is contorted and aching. Sure, I can moan and even say, “Ow!” But then what? Now we have a distracted driver who has to choose between ignoring my distress, pulling over, or playing "20 Questions" to figure out what’s wrong, glancing at me to see if I nod “yes” or shake my head for “no.“ None of these is a particularly good idea.
Yeah, this loss is a real pain sometimes. On the plus side, it limits my tendency to micromanage other people. Not enough to eliminate it, mind you. However, I believe there are some who are just a teensy bit relieved. And I’m just fine with that! Sorry, guys. Old habits …
We are continually making changes to my diet as my chewing ability diminishes. Actually, chewing isn’t the problem. It’s moving the food around in my mouth to get it between my upper and lower molars for chewing — that’s the problem. The other day, while we were coming home from an errand, I was somehow able to make Alan understand I wanted a soft taco from our nearby taco shop. How he got “taco” from “ah-oh” I’ll never know, but he did. Of course, what I was really craving was rolled tacos smothered with guacamole and shredded cheese but I’ve been sternly admonished about the danger of hard crunchy foods by my speech and swallowing therapist. I promised her I would abstain from rolled tacos. I decided to try a nice soft fish taco. But even that was difficult. I gave up after eating about a third of it. But I asked Alan to save the rest. Later, I asked him to put it in the blender, cabbage and all, then warm it up in the microwave. You know what? It may have looked revolting, but it was delicious! Well, except for one or two spoonfuls in which I detected trace amounts of cilantro. (Ptooey!! Yes, I am one of those. A cilantro-hater. Eewww!) So, blended fish tacos? Not bad! But I think I want Rubio’s next time!
Alan knows I love the broccoli cheddar soup at Panera. Not long ago he spotted ready-made broccoli cheddar soup at Costco and asked me if I wanted to try it. Oh my! Delicious! He puts it through the blender, then warms it up in a large coffee mug. This way, I can sip it slowly through a straw. Yum. :-)
More than a week ago, I accidentally bit the inside of my lower lip. Don’t you just hate that? Because the swelling that results means you will bite that same spot over and over. Ow. And because the muscles in my jaw and mouth are weakening unevenly, my ability to control movement when eating even soft foods is not good. Consequently, my poor lip may never have a chance to heal. Even when I’m not eating, sometimes my jaw just clamps shut. Hard. I’ve bitten my tongue, lips, inside my cheeks, and, yes, even the toothbrush. (At least that doesn’t hurt. Just startles Alan. I do worry about chipping a tooth.)
And speaking of the muscles around my mouth, I rarely look in a mirror, but it feels like my smile is getting lopsided. This is not a tragedy — just an observation. Unfortunately, however, this muscle weakness around my mouth leads to another, slightly embarrassing, problem: drooling. It’s a common ALS symptom. We have started keeping a small towel near for mopping up. Because swallowing is not a problem for me — yet — this isn’t a big deal. Just annoying.
There is one recent change I am really struggling with though. I always say I want to keep it real around here. Up to a point, of course. Some things are private. But this one thing I have already addressed here. I had hoped it was an isolated incident and we would manage it better if it ever happened again. Well, I was wrong … on both counts. This anxiety and panic attack stuff is getting me down.
These episodes seem to only occur late in the day which leads me to suspect that fatigue may be a factor. Sometimes listening to soothing music helps; sometimes it doesn’t. What usually happens is a building sense of anxiety to the point where the only thing that helps is basically knocking me out with drugs.
I am familiar with breathing techniques that can be quite effective for dealing with anxiety. After going through childbirth classes (twice) and successfully nursing both babies, I know the drill. (Breastfeeding moms know they must relax or the milk will not “let down.”) I got so good at relaxing, I could fall asleep seconds after my head hit the pillow. Over the years, I have used these breathing techniques along with visualization during stressful times with varying degrees of success.
But ALS has robbed me of this ability. Slow, deep breathing is no longer possible. In fact, the more mindful I am about my breathing, the more anxious I become.
These episodes of anxiety or panic rattle my mind to the point where I have difficulty recalling comforting words of scripture. I am going to try hard to meditate on key verses such as these:
“Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.” — Philippians 4:6-7
“Humble yourselves, therefore, under the mighty hand of God so that at the proper time he may exalt you, casting all your anxieties on him, because he cares for you.” — 1 Peter 5:5-7
Psalm 23 will be included as well.
I have asked for prayer from a few people. And now that I have blabbed about it here, if you feel led, I would be grateful for your prayers also.
God is so good. This morning, I saw Him already answering these prayers. It takes me several days to write these blog posts. I was trying to wrap up this one yesterday. But Tobii was being difficult and my eyes were too tired from fighting with it. So I set this aside to finish this morning. Well, (goosebumps) first thing each day, I read that day’s prayer in a book I have on Kindle. Today’s was based on Psalm 91, reminding me that I rest in the shadow of Almighty God! He shelters me from fear. Then (more goosebumps!) I opened my email. I subscribe to a daily devotional. Today’s topic? Anxiety. Fear. And the reminder from Ephesians 6 about putting on the full armor of God. God gives us protective armor to shield us from Satan’s lies and arms us with the Sword of the Spirit, the Word of God.
Wow. This happened. Just … Wow.
And with that, this post is finished. Have a great week, everyone. Armor up!
This blog was posted originally on Nov. 9, 2015.
Note: Visit mda.org/als to learn more about MDA's fight against ALS. The site offers powerful stories by people living with ALS, including Patty, as well as other helpful resources so you can get involved and help take action to end ALS today. And, be sure to visit MDA's ALS disease information center to learn more about ALS, its causes, signs and symptoms, research and more.
About the Author
Hi. I’m Patty, and I’m a wife and mom to two grown daughters, and I'm in my 50s, dealing with amyotrophic lateral sclerosis or ALS (also known as Lou Gehrig’s disease, or motor neuron disease). This blog is my journey through uncharted waters. People ask me constantly how I’m doing. The short answer is “OK.” I add “so far” in my head most times. So that’s what I’m calling this little corner of the interwebz, OK, So Far. So if you’re up for it, come along on this roller coaster ride known as my life. I can’t promise much in the way of entertainment, but I’ll try not to be too boring! Thanks for stopping by.