I'm finding it hard to stay positive. Okay, I started Tysabri and I've only had one infusion. I did notice that I had energy, and I still have it, where I didn't have any at all. That's very positive.
However, my neuro increased my Klonopin but I'm still having tremors. He didn't feel that the Tysabri would help the tremors. Sometimes they're mild, but other times my entire body is shaking. It's hard to walk, type, feed myself, write; any type of coordinated activity is hard and sometimes impossible. Add to that, my little finger and ring finger on my left hand are completely numb and have been for about four months now. It's amazing how much harder it is to type with those numb fingers. I know, poor me!!
The muscle spasms in my right leg are worse. My neuro said that he wants to wait and see if the Tysabri will help in that aspect. I'm doing exercises, but sometimes in the middle of the night it gets so bad that I have to get up and walk around until it goes away. Sleeping on my left side has become impossible, because that immediately brings on spasms.
I also told my neuro that I'm worried about my cognition. I'm having a very difficult time remembering things, and these are things I've just heard or said. I'm having a hard time naming items. That got me worried about Alzheimer's, although it doesn't run in my family. That, too, my neuro wants to wait and see if the TY will improvie my memory before he starts running any kind of tests.
On the positive side, we're going to Newport News, VA for two days. We are going to spend one entire day at the Mariner's Museum. This will be one of my highlights as I love sailing ships of any kind, especially the ones from the 1600's. We will be visiting a few other museums in the area...and there is a Trader Joe's in Newport News! I love Trader Joe's, but there isn't one anywhere near where we live. When we lived in Tucson, we went there at least once a month.
After Newport News, we will drive on the bridge over the Chesapeake Bay, stopping at pull-out places to enjoy the bay and the ocean. Then, it's on to my BIL's for some family time.
The day after we return from this trip, I will be getting my second Tysabri infusion.
I'm trying to stay positive, but I find it's much easier to become negative. Maybe it takes too much energy to stay positive?
The photo you have on your sidebar is beautiful!!
ReplyDeleteI'm sorry that you are not feeling any better right now. Trying to stay positive when it's not coming naturally is really difficult to do.
Hopefully you have will have a great trip and do enjoy the Bay.
Yeah we all have those days...weeks...months! I really do hope the Ty helps you though. And congrats on your trip down to my side of the world. Word of warning...the Chesapeake Bay bridge tunnel bridge tunnel bridge may only be 13 miles long but it feels like 100 when you have to go potty. So potty before the brige.
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