New Year's Eve in Alcapulco 2019
The year 2020 started on a high note. We had just finished a cruise through the Panama Canal over Christmas and New Year. Not much later in January, I got to go with Penni on an annual trip to one of her meetings. There were so many wonderful moments! Then, the Covid 19 Pandemic struck and everything changed. We had no clue the extent of the changes we would see.
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| Working out to walk better |
Since reality sunk in, I’ve had good moments and bad moments. My fall back in June was a really bad moment. Still, I had a goal to work on. I enjoyed seeing progress in healing and regaining strength. Later in the summer, Daughter Liz called and announced that a first grandchild was on the way! Wow. A special moment to celebrate soon. Another goal out there to give me incentive to keep working on getting stronger.
That brings me to a moment recently. I have been seeing my neurologist, Dr. Scagnelli in Raleigh annually for several years. This time I also had to do an MRI before I saw him. Over the past three years, he has been consistently pleased with my progress. I always leave feeling strong and validated that my hard work is paying off.
I know that with Primary Progressive MS, progression of the disease causes one to lose ground due to aging. However, over the last eight years, I have been maintaining if not doing better. I see it in walking, strength, balance and mood.
This time, at the end of my appointment, Dr. Scagnelli had a different message. He said,“It appears that you are losing ground to the disease.” I felt crushed. How can this be? I feel stronger. I’m not enjoying this moment.
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| Daily walks and trash pick-up |
So, I said, “What do you see specifically.” He does the same tests each time. He has me do a walking test in the hallway and strength test of my arms and legs while I’m sitting on a table. For the walking test, I simply walk back and forth between two marks about twenty feet apart. The walking portion is times but the strength portion is more subjective.
His response was, “Your walking is slower and it appears you have lost some strength.”
I said, “Okay, but you need to know I had an eye implant Monday. They said it takes a couple weeks for the brain to adapt to the new vision. They said it this may throw off my depth perception. I believe it has because I feel more tentative.”
He holds firm.“That may be but I still want to see you back here in six months.”
In debriefing with Donnie riding home, I said, “This was a bad visit. I don’t like feeling like I’m sliding backward. That’s why I work so hard. Guess I’ll have to work harder.”
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| Whale watching in San Diego 2020 |
“You’re right. I like going to Raleigh. I’ll work harder and no telling how much I’ll improve in six months.”
The year 2021 is going to be a great year with lots of special moments. These new eye implants are amazing. I’m so happy to be done with glasses and contacts. I’ll trade new, young eyes for that one bad moment with Dr. Scagnelli anytime.
I had to step in to comment on this particular blog as it is one of the best. It gives a special view of what appears negative, an introspection that gives hope of progress that may have escaped the neurologist. I have faith that the check up at six months will show not progression of the disease but real progress at movement AND improved vision. Judy and Donnie have such optimism that it becomes a mind-over-matter self fulfilling prophecy. This will make a great speech six months from that first February appointment!
ReplyDeleteSuper!
-Stan, FSTM