MS is bittersweet

Sigh. I’ve had this disease a long time and am thankful that it is not life-threatening to me right now. But sadly I have had to give up some things. 
Writing by hand. I miss journaling in the morning when I first get up, which I told someone once was keeping my own counsel.
And although I could continue to do it on a computer, I know myself. I would go back and edit as I go.
Which would defeat the whole purpose, described in Julia Cameron’s The Artist’s Way:
“When we write by hand, we connect to ourselves. We may get speed and distance when we type, but we get a truer connection–to ourselves and our deepest thoughts– when we actually put pen to page.”
Wearing regular underwear. I now must wear disposable, extra-absorbent underwear, something that I used to joke about with friends saying I’d have to insist on black ones since I mostly wore black panties. 
The whole set up is way more bulky than would’ve been acceptable back when it wasn’t needed. But I am mostly sitting in a wheelchair now so you’re not gonna be noticing the lumpiness.
Walking. Traversing a sandy beach, doing cartwheels, jumping on a trampoline. Roller skating. Trying on clothes in the changing room. Climbing stairs and trees. Standing up to shower.
Driving. When I was leaving work on one of my last days in the office, I was heading for the on-ramp to the freeway home. Suddenly the light changed and the guy in the car in front of me slammed on his brakes. My brain recognized it but the nerve signal couldn’t make it to my foot.
At the last minute I was able to swerve but sideswiped the bumper of the car in front of me anyway. Luckily there were no injuries. We pulled over to exchange details, and after he left I realized I needed to stop driving.
Now I’m dealing not only with the loss of my ability to manage my reflexes, but to even bend my legs at will. My vision is also no longer reliable
Doing some creative things. Sewing something. Tearing pictures out of a magazine to paste together in a collage. Baking. Saying “In a sec” to something and having it only actually be a second.
Then I remember that I don’t have chronic pain. And that I can still dress and toilet myself, swallow food, and talk and breathe on my own.  So I make a new list.
Working. Telecommuting from home, and also that I am still able to be in my home. Online bill pay. Grocery delivery.
Incontinence supplies. I think all the time how lucky I am in all the unluckiness of this that I have disposables. And black adult diaper covers. 🙂
Participating. Elevators. Cut-outs in curbs and other ADA stuff. Wheelchair service at airports. The Internet as community.
Doing other creative things. Able to knit. Blogging. Learning new things.
If you can’t change your fate, change your attitude.
-Amy Tan, author
Other stuff

Tagged : / /

On driving

My driver’s license expires in five days. To renew it this year, I’ve been requested to come into a DMV office and take a written test.
I have fond memories (well, they’re fond now) of learning to drive with a stick shift, calling my parents in tears demanding directions when I got lost just over the hill from home, getting into a fender-bender out of state at college, loaning my car to a boyfriend who promptly totaled it on a city street. Ahhh, good times!
I’m assuming that if I read the driver’s manual and crammed just before taking a test that I’d have no problem passing it. So the actual test is not worrisome.
Even going into the office is not my biggest concern. Although I would be curious to see how the staff react to my wheelchair. (Because I don’t have a car with hand controls–wouldn’t help anyway–and I still have my motorcycle permit on there!)
I’ve been waffling over whether to renew it at all. Period.
I have been conditioned by society that having a driver’s license is a precious rite of passage into adulthood. Once it has been awarded, I am urged to never give it up voluntarily. Indeed, there are seniors still driving who should not be.
And the last time I went into the DMV, weak and unsteady but still able to stand, I was encouraged to retake the motorcycle test as well as the driver’s test, even though I hadn’t studied for it and wasn’t even intending to keep it.
The DMV employee said that if I relinquished the motorcycle license, ‘it would be more work to reapply for it later than to renew it now.’
But the definitive argument against drunk driving applies here as well: how would I feel if I hurt or killed others?
And we have several friends who don’t have a license to drive, who have never gotten one. So clearly I have examples of how to manage as an adult without a license, role models if you will, close at hand.
I have not driven myself in over four years. With friends and family and OH chauffeuring me around, I might not even miss it at this point.
So good-bye, license. It’s been fun.
Tagged : /

A new next-big-thing

I recently listened in on the live web forum on chronic cerebrospinal venous insufficiency, or CCSVI, hosted jointly by the American Academy of Neurology and the National Multiple Sclerosis Society at the AAN annual meeting.
CCSVI is a narrowing or even blockage of the jugular veins, causing faulty blood drainage from the brain that may contribute to nervous system damage in M.S. This hypothesis has been put forth by Dr. Paulo Zamboni from the University of Ferrara in Italy. [Spectacular name!!!]
Based on his report on approximately 65 M.S. patients, published in June 2009 (J Neurol Neurosurg Psychiatry 2009; 80:392-399), venous hypertension treated by the standard endovascular angioplasty, seems to immediately improve the M.S. symptoms of these patients.
Angioplasty is where a doctor threads a thin tube through a blood vessel in the arm or groin over to the involved site in the vein. Once the tube is in place, the doctor inflates the tiny balloon at the end of the tube to disturb the plaque build-up and encourage it to move outward against the walls of the vein. This widens it and restores blood flow; it is often even an outpatient procedure.
In the U.S., early findings of a high prevalence of venous hypertension in the M.S. population seem to suggest that there is an association, but larger clinical trials are needed to confirm that fact. And if CCSVI plays a role in M.S., it is not yet known whether the condition is a symptom or a trigger.
There are other questions as well.
For example, since CCSVI occurs in many people who don’t have M.S. as well, does this indicate that the condition is just a false clue, an interesting red herring? (For example, I once heard that M.S. and gout are mutually exclusive: it seems that you can only have one but not both. Interesting but not necessarily relevant.)
Also, according to one panelist, the venous system has many redundancies. So does this blockage even need to be corrected?
He also reports that the blockages in CCSVI are not plaque but fibrous lesions.
Also, some patients who have had the angioplasty procedure subsequently have had the venous obstruction recur. What causes this and are there things patients can do to reduce the incidence?
Bottom line: this is one of the next big discoveries in M.S. research and the community is anxious to have larger clinical trials.

Tagged : /

Would I swap symptoms?

I’ve been reviewing the past five-year chunk of my life. It is very scary to realize how much mobility I’ve lost. I’m only 43; if it keeps going like this, how long before I’m in a wheelchair?
OH helped The Saint move his mother last week. The entire week. And just down the block from where she was living. There was much gnashing of teeth (I would say “”hair pulling” but The Saint has a bald head!).
The back story is that they apparently met in the 90s, again moving her. And while it was stressful and grueling then, it is the source of much jocularity today. I try to remind them of that now.
One of The Saint’s sisters was also helping them. I felt bad that I was physically unable to pitch in. Especially since she has M.S., too.
OH reminds me that her symptoms include pain, scrambled cognition, and vision problems. The Saint has now moved in with her. She worked as a CPA but eventually had to go on Social Security disability .
He wants to know if I’d swap my symptoms–bladder problems, poor hand-eye coordination, and decreasing mobility–for hers. He points out that I still hold down a full-time job. I grudgingly admit that if I had her symptoms then I might want other ones.
Tagged : /