It’s hard to believe it’s already December! My surgery already seems so long ago. Before surgery the only holiday I could even think of at all was Thanksgiving. Actually, it was hard to think of anything other than the surgery itself, especially after the date was set. So needless to say, as I have been for the past week, It’s already December and I’m not the least bit prepared for Christmas. I’ve always been one to do last minute shopping and be rushed the closer it gets, but this is a new level of being unprepared. I have to just keep reminding myself that the day will come and go. I will see my kids and grandchildren and extended family, and it will end with great memories to cherish.
As for my surgery and recovery, that’s going great. Sorry if this is gross to read. I’m just sharing details and things I would be curious about. The last little bit of that slow healing scab came off yesterday. I’m so thankful! Every other part of the surgical scar is fully healed pink skin. It is the very top neck stitch that has been so slow. It’s now almost fully healed with the white that is still slightly visible turning pink as it closes completely. It’s about time! For the last couple of weeks this has been the most frustrating thing to deal with. My range of motion is going great, but has been hindered by this because it feels like I’m stretching it when I turn either way too far, and I’ve been worried about infection. It’s hard for me to see in the mirror so my husband has been taking pictures to show me. Until a couple of days ago I thought it was much larger than it actually is. I wasn’t taking into account that he was zooming in. The first time I really got a good look at it is when he held a mirror up close behind me and I had a handheld mirror to look at it. I asked astonished, “That’s it”? It looked so small. That helped a lot mentally because there I was thinking this thing was much larger than it actually is. It still itches like crazy and my skin is red from the adhesive on the Band-Aids Tony puts on after cleaning it twice daily. He started cutting most of the adhesive off and that helps. I’ll probably only keep it covered a couple more days now that the last little piece of scab came off and it’s closing nicely. By that time I’ll feel confident it’s healed to the point of infection not being a risk.
I want to share with you what I’m experiencing post surgery. First, I want to say I don’t have any clinical data to show as proof at this time. I don’t know if it will stop where it is, continue to improve, or if or when it will start declining again. I’m choosing to share this because so many people have asked and this particular experience is so important to me.
If you have followed my blog for a while, you know my son, Tyler, is deaf and we communicate with sign language. He has been living in Indiana and planning to move back close to me. We thought it would be longer before he was able to move but he was able to move permanently when he came for my surgery. While he’s been away, with every visit it was more noticeable that my right hand had declined and signing was more difficult. Without intention my left hand became the dominant hand I would sign with and my right started playing the left’s old role, just not as well. As days and weeks passed post surgery, I started noticing my right hand naturally taking over more. I didn’t say anything. Tyler mentioned it first. He said, “Mom, you’re signing with your right hand more and better.” I can’t put into words how this feels. It is the best gift to have this ability back for however long. No, it’s not pre-ALS better at this time, but a huge difference.
I want to say again, the last thing I want to do is give false information and hope about any results of my surgery, at the same time what I’ve said is true even though I have no idea of how long, and it hasn’t been proven through testing yet.
I so look forward to the day this is available to everyone. It can’t happen too soon!
Until next time, take care,
This article was written by April