Sunday, May 31, 2009

Live from the 2009 Cal Rodgers Block Party

The block party is now over. Once I figure out how to download the recorded feed, I'll create a highlights video. The raw footage is replaying on a loop on the Cal Rodgers Livestream Channel.

Our first webcast - Today (5/31) at 3pm Central

For those with nothing better to do on a Sunday, come back here at 3pm Central. BR will be webcasting live from the Cal Rodgers Block Party!

Saturday, May 30, 2009

Wednesday, May 27, 2009

Hippotherapy

Yesterday, BR and I drove out to R.O.C.K., Ride On Center for Kids in Georgetown. They were featured in a news story over the weekend for their Horses for Heroes program, which provides hippotherapy to returning war veterans with disabilities.

From the R.O.C.K. website:
Hippotherapy is a physical, occupational, and speech-language therapy treatment strategy that utilizes the dynamic movement of the horse to achieve therapy goals. This type of treatment is effective because the gentle, rhythmic movement of the horse simulates human walking. The term Hippotherapy comes from the Greek [word] "Hippo" which means horse.
The story got me wondering if BR would be a good candidate for hippotherapy. Only one way to find out. ROAD TRIP!

We met briefly with Nancy, the director. She was very kind and encouraging, explaining how hippotherapy should be able to improve BR's balance, trunk strength, and leg spasticity. They have the equipment necessary to get BR into the saddle. He just needs to be able to sit up with assistance from two therapists walking along on either side. BR has lost a lot of trunk strength, so this may be a make-or-break issue. She asked us to come back next week for a full evaluation.

Before we left, BR put the chair into four-wheel mode, and took a spin around one of the horse trails at full speed. Gotta love the iBOT!

Monday, May 25, 2009

A Memorial Day Prayer

When BR and I lived in San Francisco, I would drive past the Golden Gate National Cemetery on my way to work. Each day I would take note of the large American flag flying near the intersection of interstates 280 and 380. A flag at half staff meant that another soldier had lost his life, most likely in Iraq. Another family shattered. There were months when I never saw the flag reach full staff.

As I passed the cemetery, I would say a brief prayer of thanks to the brave people who make up our volunteer armed forces, and to the families who support them. And most of all, I would pray that our leaders would understand what a great gift a strong military force is -- to be used sparingly in the preservation of our country and its citizens.

There is a lot of evil in this world, much taking the form of people with power operating under selfish motivations. My sincerest hope this Memorial Day is that every US citizen can honor those we have lost to war by upholding the highest of ideals that this country represents. To excel at charity and the humanities, as well as enterprise and sport. To find time to impart expertise, and to learn from experts. And to listen -- really listen -- to the messages that the planet and its people so desperately want us to hear.

Sunday, May 24, 2009

A Day at the Museum

Our neighbors from across the street invited BR and me to join them for an afternoon at the Blanton Museum. It was a great way to spend a rainy Saturday.






We then enjoyed dinner and games at Dave & Busters, followed by a graduation party for our next door neighbor who just received her law degree. Busy day, lots of fun!

Sunday, May 17, 2009

Action under the sheets

This past Friday, I was working feverishly on a bit of tricky SCons code to correct some build automation issues, when I heard a series of loud cries from the bedroom. The sounds were remarkably similar to those BR makes when he's having a seizure, so when Josue called for me, I feared the worst.

When I entered the bedroom, I found BR alert and crying, with the sheets pulled back off his right leg. I asked him what was the matter, and he said, "Watch this." With great effort, he raised his knee six inches off the bed without using his hands! It's been over a year since he's had that kind of strength and control over his legs.

Ever since the SCS trial, we've noticed that his right leg has been twitching more, and he's been able to bend and extend the foot at the ankle again. Now with this development in his hip flexors, we are wondering if the stimulation may have triggered his CNS to re-route some of the damaged neural pathways. I'm definitely adding this to the topic list for the next visit to the neurologist.

Thursday, May 14, 2009

Wings on wheels

Richie got me thinking of some of my favorite motorcycle memories.

From 1990 through 1996, I didn't own a car. I rode a 600cc Yamaha Radian day in and day out, year 'round in Dallas, Texas. The first time I dropped the bike and injured myself, I was on my way home from work. BR and I had only been dating for a few months, and he was waiting for me at my apartment. I came in with holes in my jeans and a bloody knee. He was so sweet, running across the street to the store to pick up bandages and peroxide. I knew then and there he was the one.

Now BR always said I looked like a circus clown riding such a small motorcycle. So when our car died in 2006, I totally took advantage of it and bought a 1500cc Suzuki Boulevard C90T. No need for a car living in San Francisco.

My favorite ride became "the long way home". I worked in Palo Alto, and would take Highway 84 across the San Andreas fault to Highway 1 on the Pacific coast. Took twice as long as usual, and was quite spectacular at sunset.

This video from a fellow Highway 84 enthusiast will give you a feel for the nature of the road around the fault line.



This past weekend, I was able to take the 'zuki out for a ride in the Austin hill country with Randall from Dallas. Wicked fun!

Saturday, May 9, 2009

Normality has been restored

"Please do not be alarmed," it said, "by anything you see or hear around you. We are now cruising at a level of two to the power of two hundred and seventy-six thousand to one against and falling, and we will be restoring normality just as soon as we are sure what is normal anyway. Thank you."

The Infinite Improbability Drive from The Hitchhiker's Guide to the Galaxy, by Douglas Adams.


Yesterday, we got that sign we were looking for. I went to change BR's Fentanyl patches, and found he didn't have any on. That's never happened before, so it didn't even cross my mind as a possibility. I must have gotten distracted while changing them the last time. Fuck.

I'm kinda glad we've started the end-of-life conversation anyway. As BR becomes more and more tolerant of the opioids, his pain level will continue to rise. At some point we are going to have to make the call to take the dosage to a level that will leave him unconscious most of the day. I imagine that's when hospice will be called in.

Anyway, he isn't going down without a fight. We met with the pain management team yesterday and told them to schedule the cervical stimulator trial ASAP.

Thursday, May 7, 2009

Pain Pain Pain Pain Pain Pain Baked Beans Pain Pain Pain and Pain



BR's pain levels were off the chart today. He says he feels like his muscles are trying to pull away from the bone. It's been a day full of tears for him. Hugs provide emotional support, but make the pain worse.


I've been reading the Musings of a Cranky Caregiver blog for a while now, and I think Cranky and I were separated at birth. Come to think of it, I've never seen us in the same place at the same time before. Hmmm...

Anyway, she discusses the things about caregiving that make her cranky, and how she tries to de-crank those situations. Exhaustion is a big one for me. BR and I have always been night owls. In a way, the MS encourages this, as he will sleep until 11am no matter when he goes to bed. The hard part comes in deciding when to call it quits for the evening. If we're still up when I hit the wall, I can't just crawl into to bed -- I have about an hour's worth of work still ahead of me.

The first step in the night routine is getting him into bed. Then the jealousy sets in -- he's done, and I still have to work. So it's time to go back to a set bedtime: 10pm. We can still stay up and watch TV together in the bedroom.

But that wasn't an issue today. I got him into bed at 6:30pm, and with his permission, medicated him until he was able to sleep. Still, he was moaning and twitching with pain.


I was reading in the local paper that our state Senator Watson had authored and pushed through a bill to ban additional billboards along a stretch of scenic Texas highway. This is the same senator who told me he would keep BR's situation in mind if any legislation was brought to the senate floor to legalize medicinal marijuana. So his pen moves to keep his drive pretty, but not to relieve the pain of his constituents. It makes me sick to my stomach just thinking about his bass-ackward priorities.


We've started discussing end of life options. BR doesn't want to live with this much pain. Prayer. Lots of quiet prayer and looking for signs.

Saturday, May 2, 2009

Earth Wind & Fire

It was a mercifully cloudy day last Sunday, when BR, Steve, Jeanne, and Greg helped turn Jazz Fest into a Boogie Wonderland with Earth Wind and Fire.