I agree with Blossom. Though I can't agree with their way of conveying it, or with their recommendations, I have to agree with the "Skeptics'" attempts to prevent people from getting themselves into the kind of trouble she seems to be in. Maybe this comment needs to be elsewhere; I am not plugged in outside this forum yet. I had the kind of "MS" that makes you see everything in a pretty dim light. I am still like that a lot of the time.
I am done crying about my kids leaving home. You can't say I didn't try. Many things, I expect, have still to go wrong for me, and I can only hope it is a smooth enough slide down the hill I am somehow now on the far side of. I used to think, expect the worst, and you will never be disappointed: you can only be pleasantly surprised. Now I think things are more random than that, and that's kind of my expectation for how things will turn out. Nevertheless, I know that there are many people like cheerleader and Dr. Sclafani and Ceci and thousands of others who aren't as public but are just as committed, working so, so hard to make things work out better for more of us. I don't know how to celebrate, congratulate, or thank them. All I can do is send out as many good vibes as I can muster.
No, I can't walk yet and it's not looking too gloriously optimistic. It's been too long things have been unused, and lose them I have already done. And the pain: well I have decided to risk more heart problems for the sake of keeping on top of that with certain drugs. You have to weigh risks, make trade-offs. So far we are enjoying the empty nest.
I count my blessings. I am able to tolerate loud fast obnoxiously repetitive music when it is also done by maestros who know a lot about structure and design and achieve complexity when interpreting the work of master songwriters and composers. That's one of the things Jazz is all about. I count Jazz as among my principle blessings. It makes up for a lot.
And there is also electronics. I live in 21st century North America in an electronic playground. All the seers in the nineteen-fifties who thought the future was going to be a labour saving heaven were wrong about that. My dishwasher doesn't cook me dinner yet. But they could never have imagined the kinds of doodads we do have. It reproduces music and movies, young and old, better than anybody thought, so now are tiny nano-boxes with ear-buds that will play you a rhapsody while you are watching Humphrey Bogart on an elliptical trainer graphing your heartbeat at the gym.
I know there are many suffering as I write. Many who can't stop the pain, who can't get to the bathroom on time, and you know the rest. I count among my blessings the curses I know they have, that for the moment, I don't.
What else have I to offer you besides my litany of self-congratulation?
I think there is one thing, today, anyway, and I will say it to my CCSVI friends before I'll wander off the forum. It's about vestibular balance.
One of the considerations when I almost voluntarily gave up my drivers' license was that I was losing my balance. That has improved a lot since my procedure, but once in a while I still stumble or fall. Even, and maybe especially, people who have been there through my worst times of bad balance still move quickly by reflex when I seem unsteady.
I think my inner ear is affected, as well as some proprioception.
The book that I have mentioned here a couple of times, "The Brain That Changes Itself", I think has a passage about a woman who got too much of an antibiotic that robbed her of almost all of her vestibular balance. The doctor said, so sorry, it's permanent. She lost her job and was in a state of permanent vertigo, where even when lying down and perfectly still, she felt nauseatedly like she was falling down a hole. Malice in blunderland. Then came a doctor with a hat. It provides feedback by a gizmo you put on your tongue, about what your head is doing. Roll, pitch, and yaw, the things the three circular canals in the inner ear measure. It had accelerometers you wore inside a hat. After a few minutes, the dizziness was gone! After progressively longer times, culminating in forever, she could take off the hat. She had trained her brain to use the tiny bit of vestibular balance she had left.
She now can drive. Meanwhile, cameras, phones, and pad computers have accelerometers built in. Some double as laser-levels. The hat is now a pair of glasses. I think you still use your tongue. I want to try this, as I believe it will help me walk, and even drive.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience