Dealing With ALS

Post 6 of 84

I think this is the longest I’ve gone without writing. I have prepared to write several times, but the words don’t come. I tell myself, maybe tomorrow. I do have things to say. Maybe it has to do with – life just hasn’t been easy lately. We are still in this house which means I’m down in this den I call a dungeon. I really do try to think positive and remember I have it better than many others dealing with ALS.

Some may ask if I’m clinically depressed? I say it’s possible. Never say never but I want nothing to do with any class of antidepressant medication myself. That’s just me, I’m not knocking them for others at all.

I wonder and worry if I’ve made the right decision about sharing my surgery outcomes so openly. That door is wide open, no sense in closing it now.

I just want to get in our new home and settled so we can start checking off things I want to do before it’s too late. I’ve found myself saying similar things since my diagnosis. Such as, everything will be much better when we have a handicap accessible van. It has been much better, but it’s immediately on to the next thing that I can’t stop worrying about that we need or will need eventually.

The great thing is I was able to participate in the Neuralstem stem cell study and I’ve had great results. I was really disappointed when my outcome measures were the same this last clinic visit, I thought I had improved a little more. I still feel stronger and can do more on my own than I could pre-surgery. I know there are several things I wouldn’t be able to do now if not for the surgery. I can’t help but wonder if it was because we did the strength testing from my power wheelchair. I usually transfer to a different chair and some of the angels were different. Just a thought.

I often wonder how much more I would have progressed without the stem cells by now. I was steadily progressing with ALS, I know where I was, I’m sure my breathing  would be down from point of surgery, but it has improved and is holding steady. I’m sure my right hand and arm would be much worse, as well as other losses.  At this point between having the improvements and holding steady and what I would have lost from ALS progression, I have no doubt been given extra, improved time. Amazing! I’m very thankful and lucky.

I could go on with several other things I’m dealing with, good and bad, but I need to bathe now or that means I may not get to today. I want my bath! Until next time, take care.




This article was written by April


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