Progression... Always Wondering What's Next

Hello, I feel like touching on progression of ALS today.

First of all ALS definitely has it out for the right side (dominant side) of my body, more than my left. Sometimes it's hard to know for sure which really began first the top or bottom. However the move upward is faster and more severe. I remember when my ankle muscles started getting weak. I kept feeling I had mildly sprained it, I remember first not being able to stand on my toes or heel of right foot and told I had drop foot. This coincided with my back injury. At this point I was fitted for a custom AFO. It didn't help the pain but it improved my walking drastically. I had been swinging my foot to the side to walk after my back injury and this enabled me to walk almost normal, I remember first noticing my right calf muscle, which had always been rock solid and easy to flex starting to soften. I started noticing turning keys or clipping my nails made my index finger sore. About this time I noticed my water often running out of the right corner of my mouth and an ever slight slur.

I also had my ways to explain it away. My ankle hurt because I'm clumsy and my right foot has always turned in if I wasn't keeping myself aware or wearing high heels. I couldn't wait to wear them again. So I concluded that was causing the ankle problem. The drop foot was from my back. I was baffled about my soft calf and started trying to work it out. I tried using more yoga poses geared at strengthening them but found it getting harder to keep my balance in any pose that needed balancing strength from right leg. Well, I've always been clumsy. I always had good and bad yoga days, clumsy and stress was causing more bad days. My water was dripping down my chin because I wasn't paying attention. My fingers were stiff and sore because I was getting arthritis. I decided my little slur was because I had gotten carried away being silly at home and talking in a real country voice too much. Yes, I'm serious. I remember telling myself to stop because I'm starting to really talk like that in public out of habit.

You can make yourself believe crazy things in desperation. My body had been telling me for a while something was off but I didn't want to believe it. I mentioned it to Tony, but didn't want to sound whiny. After-All except for most people thinking I was a little underweight, I was the picture of health. Lean and fit, I worked out and ate healthy, except for my addiction to sweets. I worked hard to keep my caloric intake where I wanted and still get the right nutrients and my sweets too. The back injury changed my focus. I wasn't able to do anything to notice these symptoms because of the pain. A lot of  those symptoms were forgotten because I was unable to do the things that made me notice them. It did start the tests rolling and a big puzzle started to take form.

Now that very slight slur is a, "that bitch is drunk or something" slur. Very hard to be understood over the phone. Very hard to project my voice. The more I try the more hoarse it gets. I'm best understood in person very close up and no background noise and I can talk very softly. My water does run out of the corner of my mouth a little more often but not much. Now It just seems to want to stay in my throat and come back up in small amounts and I re-swallow. It used to be easy to gulp down a 16 oz bottle real fast. It was much easier to stay hydrated. I don't really remember eating problems back then, but now forget anything that takes real chewing. My jaw tires fast. I've noticed my food seeming to want to slide to the back of my throat before I'm ready. I've found plenty of soft foods and I'm certainly not having trouble keeping this extra wait on. My doctor wants it that way, but I so miss my thin body. I'm keeping the weight on as long as I can because I know the time will come that I need it.

This is about the state I was in at diagnosis. Now my right calf is complete mush. My right thigh has atrophied a lot; I first noticed on the inside area right above knee. It cramped and twitched a lot and got smaller. Then for weeks my whole front thigh would cramp up, very painful. This is when I'm really getting the pattern for me. There's painless twitches. Then a constant feeling of soreness is best I can explain, almost like a good hard workout soreness on day two or three. Then comes the extreme cramping. then I can see the muscle atrophy before my eyes, then I can't use it. This is how my walking ended. All my leg muscles compensated for the loss of others til there wasn't enough left. It can't come close to holding my weight and when I try to use it for just a little support, it gives. There is some muscle because, although much less intense, I still get that whole front quad cramp. I just say to it, you're fucking gone, I know, you can stop now!

I've always had good upper body strength for a female. I did pull ups, putting Tony to shame. I was proud of my muscular arms. I could put many men to shame flexing my forearms. Yes, I'm bragging. During a short hospital stay, for planned surgery,  three years ago a nurse came in and said, "Oh, we have to get that IV changed. your vein has blown." Looking closer she mistook my muscle for swollen tissue, and brought  other nurses back to look at my very slender but muscular arms. Now my right arm isn't mush but it's definitely not muscular. Just doing the flexing motion hurts, and I can see it's atrophied and sunken compared to my left. My left arm, hand is now my dominant. I'm sensing my right arm to be the next fully useless limb. It's twitching more and sore and those hard cramps are showing up. My fingers are still usable in comparison to others, but they're weakening and want to curl. I can still type with them but pay the price. Sometimes I manage to open a water bottle but less and less. Now my left side seems to be all in unison. not more at one end, just slowly getting weaker and the twitches are spread equal.

I could go on but I imagine you have a life to live. I planned on talking about my face. Maybe tomorrow. I'll just say I only know my real smile from pictures now.

Until next time, take care

April

 

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