I was diagnosed with Primary Progressive MS in 2010. As an extra treat, in 2005, I was diagnosed as bipolar. As you may see my brain is not working as well as it should. My father suffered the same disease and he was the same age as I (54) when MS really kicked in. The stories here can tell you more. Welcome.
Last week I picked up pictures that I had left at CVS for development. This was one of those quickie camera you pick up at the checkout counter, one time use and drop it off. This camera had been sitting on a shelf for a number of years, slightly dusty, and I found it when I was putting holiday decorations away.
When I loaded the CD, this is what I found:
I have no idea who this is, but there seems to be some concern about the right side of her neck.
And then we have this:
I assume that these children, whoever they are, are not glad about the neck problems, but it is (was?) the generic Holiday Season. There were more pictures of these folks in various combos but then it becomes:
And then there I am. Plus some totally undecipherable shots. The picture above is from my retirement party on December 31, 2010 which you can see was widely attended. It seems a million years ago, and also about 15 minutes. So the family pictures are from before 12/31/10, and we must have passed each other during the holidays, exchanging cheapie cameras from some table somewhere As for my picture, I'd been diagnosed with MS about six weeks previous. Not bad, considering. I'm still here. So if you think you are or know whose neck is being displayed above, lemme know, because you take better pictures than anyone here
Working on the mystery novel limits my time here so I am glad that people still visit now and then, and we are over 7000 hits.
So here I sit on the little bed in the doctor's office, and I'm wearing the back open gown. And I'm up to chapter three of the life of William Herndon, who was Abraham Lincoln's law partner, long ago and far away. But since I've read everything possible in the room while waiting for the doctor, I was now down to the actual book I brought. Not that the President's friend's life story is boring or anything, it was a powerful time in US history, and Herndon found himself as an eyewitness to Lincoln's rise to the White House, and had access to people and papers - first-hand-sitting-there-access- that biographers don't have now.
But Herndon never had to kill time waiting for the IMA physicians to finally call my name. Naturally I had to print directions and download a picture of the place in order to not waste time driving around as I do now because the directional light in my brain just flashes yellow after years of left and right arrows sending me the correct way.
Applicants for disability go in the back entrance (not pictured) and sit in a waiting room like all waiting rooms, drab with ongoing television. They fill out the forms they are handed and wait to be called. It is just so surreal to sitting out here waiting to be called (every time one of the people in the white lab coats came out the main door, it was like The Price Is Right - Come On Down! You're the next contestant on You Say You Can't Work! Pick Me! Pick Me! I have lesions!)
It did like they were just hoping some people would just leave in exasperation which meant their case would be denied for benefits, not only with SSD, but other forms of assistance as well. It's one of the perks of being an old Social Services worker (though I prefer the term later middle aged old time Social Services worker). But eventually they got around to me and I did the half hour with the psychologist and I can still name the three things she wanted me to remember (tulip-chair-brown which was fairly easy because you could think of a brown chair with a tulip on it) and I did pretty well with number orientation (start at 20, and count in intervals of three backwards). A little bit of historical information, medical stuff, here's a list of the scripts, and yes, on top of the file I brought with me is a sheet of paper with directions to the building, a picture of the building, a list of things I wanted to mention, plus a list of other errands. I held this in my hand so the doctor could see it.
"I have a Master's Degree in Public Administration. I am a published writer. But unless I write down what I need to do immediately, its gone. I can walk from my writing desk to any part of my house, and any part is no more the 20 feet away, and by the time I get that 20 feet, I've forgotten. I'm a person who uses words for a living, and the words are being hidden by my own brain."
I'm not sure how I did, but I can say that at least she got sort of an idea of what its like, especially when you get the old line "Forgetting when you walk into another room what you're in there for? You're just getting old!" No. This is not normal.
Making the case to the next doctor while I am wearing this:
was somewhat problematic because (Okay, Everyone - 1, 2, 3) "You look great!" And I can touch my nose with my hand quite well, thank you. I prep for days before my next nuero appt. I can walk but then I'm supposed do the heel-toe thing, and it comes out that no matter how great I look I live in a brain fog where I can go off balance any old time, and taking umbrellas and nearby pedestrians with me.
"It says here you were on Copaxone. Why aren't you still taking it?"
"Copaxone does not work for people with PPMS/DD," I said. "My new neuro got me off of it immediately."
"Why not on steroids?"
"It does not work. My lesions are in my brain."
And why are looking in my ears? You can't see the disease that way. No optic problems so far.
Reflexes (also known as hammer time):
"Strange your left side is different from your right," said the doctor.
Yep. Everything is different.
I'm not sure that he got much info from said new neuro except a faxed letter saying I've got lesions, and good luck! I was dismissed quickly, got dressed and out of there.
Will I qualify? Not sure yet. And then its going to get harder if I do get rejected. But writers know rejection slips pretty well. "It's not personal," editors will say. But you've turned yourself and your story over to people who look charts and eligibility criteria to decide your fate. Nothing personal, and you do