Visiting Ignatius

Sights and Sounds of Bourbon Street

BR and I took a road trip to New Orleans this past weekend for the Jazz and Heritage Festival. We met up with our friends Jeanne and Greg from Oakland, as well as the Louisiana crew.

This was BR's first trip to New Orleans in a wheelchair. On the whole, things went well. We arrived at 4am on Friday looking a bit like the Beverly Hillbillies after being on the road for 10 hours. The room at the Iberville Suites had just enough space to accommodate the hospital bed and wheelchair.

The streets and sidewalks of the French Quarter have never been known as consistent. Potholes, missing sections of bricks, and general unevenness make navigating in a wheelchair quite the adventure. We shot a video while walking down Bourbon Street this past Saturday evening to give you a feel.

Noted Bloggers Break Award Chain in Protest over Digital Divide

AUSTIN (BS) -- BR and Steve returned from an exhausting weekend in New Orleans to discover they had been given the Kreativ Blogger award by their dear online friend, Herrad.

"Is this some kind of joke?" Steve asked. "I mean Herrad is very well traveled and reads lots of blogs. The stuff we put out there can't possibly be all that kreativ in comparison."

"I didn't even know we were nominated," BR said while eating a cookie left over from the trip.

In their acceptance speech, Steve and BR dedicated the award to all the kreativ people living with MS who don't have the means to blog.

"There are millions of kreativ voices out there yearning to be heard. Yet they remain silent as the gap between the 'haves' and the 'have nots' grows. We cannot, in good conscience, pass this award on until our offline brothers and sisters are allowed to step up to the microphone!"

BP MS 150 rolls into Austin

This past Sunday, BR and I set up an unofficial community pit stop at the edge of the Mueller Southwest Greenway. Several neighbors, as well as Cathy and Todd from Dallas, joined us in cheering in the 11,000 riders, who raised over $12 million for the Lone Star Chapter of the National MS Society.

Tax day aftermath

Can someone call Chris and Mariska? I've just been molested by my Uncle Sam's weird friend. I can't bring myself to say his name, so I'll just use his initials -- AMT.

Last year, he touched me inappropriately, leaving me confused with a sick feeling in my stomach. But this year it was a full on assault.

Seems that in financing our relocation from California to Texas through the exercising of stock options, I caught AMT's attention. I tried to reason with him. "I used the money to buy and remodel a home closer to my disabled partner's family," I pleaded. "I'm paying for his caregiver, which creates a job and lets me keep my own." No reaction. "I'm paying for his medical insurance and bills, including hundreds per month in medications alone. We bought a wheelchair conversion van to stay active and productive members of society."

"You're just a couple of fags," he muttered as he tore down my pants and grabbed my checkbook.

"But I need that money to pay for BR's care!"

"Shut up and bend over."

SCS trial ends without achieving goals

The trial is over. The wires were removed yesterday.



Click here for pictures of the wires being pulled out.

For the trial to be considered a success by the insurance company, BR's pain level would need to have dropped from the 6-8 range to the 3-4 range. After a week of experimenting, we were only able to get it down to the 5-7 range. So there will be no permanent lumbar stimulation implant.

The pain management team is going to consider a cervical trial, but nothing definite yet. In the mean time, we are bringing the Fentanyl dosage back up, and are considering biofeedback as a way to break the anxiety-pain cycle.

Last night was another wonderfully social evening on the front porch. We shared some good Absinthe with the neighbors, and started planning a block party for late May.

Remembering Benny

You had your first stroke before I even met you. But you were a fighter, and I have many memories of you in the years that followed. You spent a week with us in Dallas -- meeting all our friends and feeding us fried catfish. You took me to buy the best peaches I've ever tasted direct from the man who grew them. You lived your life to its fullest, even after moving into assisted living. BR and I still tell the "Budweiser" joke, but not nearly as well as you.

It's been three years since you passed. BR appreciates the nighttime visits from his daddy.

Funny vs. MS

I just noticed that yesterday's binge allowed "funny" to pass "MS" in the post counts over there on the left. I hope we can maintain that balance in a more meaningful way going forward.

Birthday Guilty Pleasure #19: Friends and Family

I want to thank you for indulging me. I celebrate once a year. It's my day. And nothing makes me happier than to be surrounded by the people I love.

Birthday Guilty Pleasure #18: Chicken Tetrazzini

You are going to have to visit the Maury Povich website to see this one. But trust me. You'll be talking about it for yurs.

http://www.mauryshow.com/vid_player.php?cat=0&cid=1082440

Birthday Guilty Pleasure #17: Judge Judy

In this case, John Lydon is the defendant.

Birthday Guilty Pleasure #16: Monty Python

"Whenever life gets you down, Mrs. Brown..."

Birthday Guilty Pleasure #15: The View

It's July 2006. Star Jones had already said her goodbyes, but the drama that was Rosie had not yet started.

Birthday Guilty Pleasure #14: Wheelchair Kamikaze Videos

Drink from the font of lemonade.



Click here for more videos and entertaining insight.

Birthday Guilty Pleasure #13: Elderly Jokes

A friend forwarded this to me. Don't get any ideas, though. I'm not one to tolerate indiscriminate forwarding.

Stop me if you've heard this one before.

Couple in their nineties are both having problems remembering things. During a checkup, the doctor tells them that they're physically okay, but they might want to start writing things down to help them remember.

Later that night, while watching TV, the old man gets up from his chair. "Want anything while I'm in the kitchen?" he asks.

"Will you get me a bowl of ice cream?"

"Sure."

"Don't you think you should write it down so you can remember it?" she asks.

"No, I can remember it."

"Well, I'd like some strawberries on top, too. Maybe you should write it down, so's not to forget it?"

He says, "I can remember that. You want a bowl of ice cream with strawberries."

"I'd also like whipped cream. I'm certain you'll forget that, write it down?" she asks.

Irritated, he says, "I don't need to write it down, I can remember it! Ice cream with strawberries and whipped cream - I got it, for goodness sake!"

Then he toddles into the kitchen. After about 20 minutes, the old man returns from the kitchen and hands his wife a plate of bacon and eggs. She stares at the plate for a moment.

"Where's my toast?"

Birthday Guilty Pleasure #12: Queer Duck

The episode starts about 22 seconds into the clip.



More episodes available on sho.com!

Birthday Guilty Pleasure #11: Gay Marriage

Our Wedding Album

Birthday Guilty Pleasure #10: Clean House

Sure I'm a bad housekeeper. Sure I have an unhealthy attachment to receipts. Please don't call Niecy on me.

Birthday Guilty Pleasure #9: South Park

Matt and Trey have taken South Park where I've never been before. This clip is a bit explicit, and entirely wrong.

Birthday Guilty Pleasure #8: The Onion News Network

12-Year-Old Boy Scouts Volunteer To Give Women Breast Exams

Birthday Guilty Pleasure #7: Shirley Q. Liquor

It's probably best if you don't discover what she really looks like. Tell your mom an' dem I asked "How you durrin'?"

Birthday Guilty Pleasure #6: Best of Craigslist

I've used Craigslist to find 3 apartments, buy a steamer trunk from the 1930s, and sell a pick-up truck. But it is oh-so-much more.

http://www.craigslist.org/about/best/all/

Birthday Guilty Pleasure #5: "Weird Al" Yankovic

Since the early days of "Al TV" and "Yoda" sung to the tune of "Lola," I've been a fan.

Birthday Guilty Pleasure #4: Drag Queen Beauty Contests

This one is a bit rough in some places, and just plain wrong in others. You have been warned.

Birthday Guilty Pleasure #3: The Potty Dance

Toddler: But Mom! I can't potty until I potty dance!

Mother: All evidence to the contrary.

Birthday Guilty Pleasure #2: Cooks Illustrated Video Podcast

If you go to the Cook's Illustrated website, they want you to join before giving you access to the podcasts. But if you go to iTunes, you can download and watch them for free!

Wouldn't a "Fluffy Yellow Layer Cake" be perfect for both a special person's birthday and Easter?

Watch it!

If you skipped past that latest guilty pleasure, go back and watch it. Or I'll eat you like an otter.

A day of guilty pleasures

Today is my birthday. I normally celebrate with an all day drunk fest. Today, I have to go register the car and motorcycle, and renew my driver's license.

So instead, I'm sharing a celebration with you in the form of online guilty pleasures. Keep in mind, if they were politically correct, they wouldn't be guilty pleasures. If you are sensitive, you may want to skip today's posts.

Guilty pleasure #1: Fat Jokes



Feel free to explore the related videos. He's got a whole bunch more funny stuff.

Reflecting on the causes of BR's pain

BR had the SCS controller adjusted yesterday, with a few new programs added. We are still experimenting, trying to find a program that isn't too irritating, yet masks some of the pain.

I asked the technician how BR compared to other patients she's worked with. "Everybody's different. You just have to play around with it." We now have 12 programs with 20 power levels each. That's 240 combinations to "play around with". The vast majority of these create more discomfort for BR than the relief they provide.

She recommended a technique for setting the power level:

1. Slowly increase the power until the sensation is noticeable


2. If the sensation is uncomfortable, back the power down a notch or two

This would be fine except for the fact that BR is experiencing "sensation echoes." An unpleasant sensation will replay in his head for up to a minute or more after the stimulus has been removed. This turns the recommended technique into a form of torture that could get someone a court date at The Hague.

I'm still wondering if a cervical placement of the stimulator leads wouldn't have been more effective. Evidence is mounting that progressive MS is a result of damage to the nerve axon, which gets exposed after the myelin sheath is stripped away during the initial MS attacks. Like a metal wire without insulation and exposed to the elements, the wire eventually starts to corrode. Signals get weaker and degrade as the corrosion gets worse. Eventually the signals don't get through at all.

I found this video from the Mayo Clinic on YouTube. It talks about a couple of enzymes that may be responsible for the axon damage in people with progressive MS.



In the telecommunications world, there is an effect called electrical signal reflection.

Signal reflection occurs when a signal is transmitted along a transmission medium, such as a copper cable or an optical fiber, some of the signal power may be reflected back to its origin rather than being carried all the way along the cable to the far end. This happens because imperfections in the cable cause impedance mismatches and non-linear changes in the cable characteristics.

Could it be that the pain signals we are trying to mask are actually impulses that started in the brain and were reflected back at the point of axon damage? This might explain a couple things.

• Stress and anxiety increase BR's pain levels. Research has shown that accompanying anxiety, "Almost invariably there are physical disturbances -- palpitations, tremulousness, sweating, diarrhea, etc. -- due principally to overactivity of the autonomic, particularly the sympathetic, nervous system, and to increased output of catecholamines by the adrenal medulla." In theory, when this increased activity hits the damage, it reflects back to the brain as a pain signal.


• The sensation echo could be caused by two or more damaged axons along a single neural pathway. The signal bounces back and forth between the points of damage, losing strength over time.

Of course, I'm not a doctor. My training is in engineering and computer science. But still, my instincts tell me that if the stimulator leads were placed in the cervical spine between the brain and the axon damage, we might have a better chance of scrambling the pain signal with fewer sensation echoes.

Chronic Pain: How far would you go to find relief?

In search of relief from chronic, debilitating pain caused by MS nerve damage, BR has tried many treatments:

• Opioids: Hydrocodone, Oxycodone, Fentanyl, Methadone, Dilaudid


• Neuropathy medications: Nortriptyline, Gabapentin, Topamax, Imipramine, Lyrica, Cymbalta


• Herbal medications: medical marijuana


• Alternative treatments: acupuncture


• Radical procedures: intrathecal pump trial, lumbar spinal cord stimulation trial

Opioids provide temporary relief, and require increasing doses to keep working. Side effects require additional medications to counteract.

The neuropathy medications are difficult to track, but I can tell you that when we tried to take BR off of Topamax, his skin temperature shot through the roof, and he couldn't be touched without wincing in pain.

Medicinal marijuana has been an effective drug. When BR used the correct dose of marijuana, all the effects went to controlling the pain. He remained clear-headed and was not what most people would consider "high".

Acupuncture provided some relief, and BR would like to get that going again.

The intrathecal pump trial using dilaudid was a complete failure.

The jury is still out on the SCS trial. As predicted, it isn't a home run by any stretch of the imagination.

I know we have some readers with chronic MS related pain out there. What have you found most effective in controlling that pain?

Spinal Cord Stimulation Experience (part four: DVD Extras)

Spinal Cord Stimulation Experience (part three: post-op)

Spinal Cord Stimulation Experience (part two: pre-op)

Spinal Cord Stimulation Experience (part one)

Today is Wednesday. You know what that means?

We're gonna have our pre-op tests!
So use the bathroom. Your underwear's clean.
Charge up the chair so the doctor can be seen.

Sung to the tune of "Guest Star Day" from the Mickey Mouse Club.



Good luck getting that out of your head.