I had my biannual trip to the neurologist yesterday. After the usual one hour drive to San Francisco, I was bored and overheated. I wasn’t prepared to be given any less than ‘you are doing just fine’ comments. So after my usual neuro work up, Dr Goodin sat down to calculate my EDSS (extended disability status scale). I watched him struggle with the numbers and choices while I chatted with his new assistant, Benjamin, who had recently arrived from New Orleans.
When he sat back in his chair, it signaled that the decisions had been made, and the computations finished. I casually inquired as to the numbers, expecting my usual 3 or 3.5. The good doctor gave me a hard look, and pronounced:
SIX POINT FIVE
This number is heavily weighted on your ability to walk, he said. Well, YES, I can still walk, but just not on either my tiptoes, or my heels. Who does that anyway? I’m quite sure that when Aerosmith created the song, ‘Walk This Way’ that it wasn’t referring to these peculiar ways of moving! I also have problems walking in a straight line, or even within the borders of the average sidewalk. An uneven surface similarly challenges me. If I have to find a path through a scattering of obstacles I’m equally stymied. For example, a large sleeping dog, tennis balls, and chew toys can cause me huge grief, especially if the dog startles easily and jumps up in alarm. THAT is a recipe for disaster!
The appointment took place in a small exam room, measuring perhaps 10 foot square. It was in that limited space that my walking ability was tested. Just walk across the room for us, would you?, the doctor said. So, how many decent strides did that take: four, maybe five. It was sufficient, however, to demonstrate my balance, or lack thereof. To think that I took ballet as a youngster!
I have noticed that my balance is getting worse. It is such a gradual worsening that I can’t pick a day and say that this was the beginning of the worsening. It just slowly, but surely, has been ebbing, minute by minute, inch by inch. My Grandma used to say that I was as surefooted as a gazelle. She passed just after my 20th birthday, so luckily she never had to watch this progression, or should I say Regression. Mom and Dad passed in the mid to late1990’s, so were also spared this silliness. Actually, I was formally diagnosed with MS in February 1998, and Dad went in September of that year. When autopsies were ordered for the rash of deaths in his nursing home, the coroner called me to reassure me that he did not in fact have Alzheimers disease. Offhand, he said, “but you knew he had MS, right?”
This discouraging score for an EDSS took me aback. I have been trying to rationalize this disheartening number, to no avail. It is what it is.