BR on 6th Street

Awwwwww!

The Pity Titty Incident

BR and I ventured out to 6th Street Tuesday night to see how Austin celebrates Mardi Gras. The street was crowded with mostly twentysomethings, but they were still passable for BR and his chair. The bars themselves were pretty empty -- lots of elbow room.

As we were heading back to the van, the cutest young lady made a beeline for BR, stopping right in front of him. With a slurred "Awwww," she lifted her shirt, exposing herself in what will forever be known as "The Pity Titty Incident."

Thinking of Barry

The SFGate article about Millie got me to thinking about our friend, Barry.

Barry spent his days on the corner of Noe and 17th Street in San Francisco, not far from our apartment. We'd greet each other cordially each morning as I made my way to work. By the time I returned home, he had usually moved on to the doorway of a business on Market Street, where the owner allowed him to sleep with a modest amount of shelter.

Barry rarely asked for money -- especially not from people he got to know. So the first interaction most people had with him was when they noticed he spent his days drawing. His talent is amazing. BR would occasionally pick up items for Barry at the corner store, and he would repay BR with art. It was important to Barry.



When BR was hospitalized over the holidays in 2007, Barry asked about him every day with a genuine concern.

When BR came home, and we were struggling to adjust to all the changes MS had thrust upon us, I would hear a gentle sweeping sound early in the mornings. Barry was out front clearing away the trash left behind by the previous night's revelers.

When I visited the Bay Area last November, I stopped by the old neighborhood. Barry was nowhere to be found. I hope you are well, friend.

Mardi Gras time again

It's that time of year again. Mardi Gras time! It was 1992 when BR talked a group of us into a road trip from Dallas to the Mardi Gras in New Orleans. I instantly fell in love with the city. As Anne Rice said, New Orleans is a city of "preservation through neglect." So many beautiful old buildings that nobody bothered to tear down.

Every year when Mardi Gras comes around, I do everything I can to justify making the trip. "You deserve a vacation." "You'll get to see so many friends with just one trip." "It's a late Mardi Gras this year -- those are always the best!" "You'll be driving this year, so you'll save money on airfare." And the newest, "BR may not be able to go next year." But when push came to shove, the budget just couldn't absorb the cost.

I guess I'll just have to wax nostalgic.

Lazy Saturday

BR's iBot was in dire need of a "deep discharge", so he and I spent the day relaxing in bed, catching up on TV shows in the TiVo. I also made biscuits and sausage gravy from scratch for breakfast. My previous attempts at sausage gravy didn't turn out so well, so today I used a recipe from The Frugal Gourmet. The gravy turned out great! The biscuits were a little tough, but not bad for my first try.

While Gina was here, I set her up with a blog where she can show off her fantastic pieces of Batik art. Today, I noticed that she had started uploading images, so I gave her a call. We talked a bit about the blog, and then I spent some time adding a few more elements for her. I hope she likes the result.

A city that takes care of its own

S.F.'s once-missing Millie back in North Beach

(02-19) 19:21 PST -- Millie's finally back in town, so all is well again in North Beach.

The 85-year-old street icon with the beaming, toothless smile and ever-ready Polaroid camera was fetched from Reno Wednesday night by friends, and by today she was back at her rounds.

You can read the rest on sfgate.com. Some say San Francisco has a "street people" problem. While living there, I preferred to call them San Franciscans.

Information Society

There is so much information out there. Some good. Some bad. So many people blogging about their lives. So many corporations and governments tracking our interactions. So many medical professionals trying to do what they can to help their patients. So many medical equipment and pharmaceutical corporations trying to sell their products. So many medical insurance corporations trying to keep the cost-to-benefit ratio in line.

Digital information never dies. Some is public, like every post I ever made on Usenet dating back to 1990. Some shouldn't be public but is, like my personal information that has been "lost" by two of my previous employers. And then there is information on the effectiveness of medical treatments.

When BR and I met with the representatives of the corporation that makes the spinal cord stimulator equipment, I had one simple question. "Based on the data you've collected over years of trials, what are the chances that someone with BR's condition will benefit from the device?" You would have thought I had asked for their first born.

The responses we got ranged from, "We don't collect that type of information," to "FDA regulations don't allow us to disclose that type of information," to "We have 'Patient Ambassadors' that you can e-mail," to "When I searched the internet, I found a study that showed up to an 80% effective rate on MS patients." All within a 45 minute guided tour/sales pitch.

It is so obvious that the SCS equipment company isn't going to talk. Why would that be? I'm guessing it's because of the insurance company. If they admit that there is less than a 50% chance of success, the insurance company may not pay for the trial at all.

But wait a minute. The insurance company has their own information. For years they have been paying for SCS trials and know which patients went on to get the full implant. So I put the same question to the insurance company -- it's been a week with no response. Why would that be? I'm guessing tort law. If the insurance company admits that there is greater than a 50% chance of success and they still denied the procedure, they may get sued.

Lost in all of this is the most important person in my life who is in a whole heap of pain. The SCS trial won't be easy for him, no matter how many times the sales critter says "it's just a little needle." Every time she said that in the meeting, he would glare at her, until he finally said, "Have you ever had that little needle shoved in your back? No? Then shut the fuck up!"

It's pretty obvious that SCS treatment won't be a slam dunk for BR, but still we are leaning towards the trial. The dosages of pain killers are only going up, and with each increase, I'm watching BR struggle more to communicate clearly. In the end, the insurance company's threshold for approval is going to be higher than ours. I just hope it isn't too high.

Here's what BR has to say.

How all this got started

Back in November, when I was struggling under the weight of all the life changes that we had experienced so rapidly, I came across a post by Merely Me on HealthCentral's Multiple Sclerosis site. In it, she described her first year with MS, and asked others to contribute theirs. So the day after Thanksgiving, as I was laying in bed trying to cope with BR's abscessed gum, I posted our MS story in a comment.

First Year with PPMS
Anonymous
Friday, November 28, 2008 at 05:52 PM

My partner was diagnosed with MS in April 2007 at the age of 46. He had been experiencing tingling in the hands, bladder control issues, and short periods (1-2 hours) where his legs would just give out without notice. Within months, it became clear he had one of the most aggressive forms of MS anyone had ever seen.

He started using a cane in July. A walker in September. In October, as we boarded a flight to start a 2 week vacation celebrating our 15th anniversary, he took his last steps. And as he lost the use of his legs, they took on a life of their own, constantly jumping with painful spasms. His November MRIs were a complete bust due to all of the movement. By April 2008, the spasms had left his legs and started in his arms.

In those early days, I remember the bladder control issues as being a really difficult challenge. We didn't discover condom catheters until after that 2 week vacation, and instead relied on a hand-held urinal for emergency situations. We learned to always scan an unfamiliar location for either a wheelchair accessible rest room, or a secluded corner where he could use the urinal.

October also brought the first complaints of occasional abdominal pain. We initially mistook the pain for neuropathy. Big mistake. Two days before Thanksgiving, the pain had become unbearable and a fever started to spike. I wheeled him down to the emergency room, where they drained 2 liters of urine from his bladder. Who would have thought that a bladder that leaked so frequently could at the same time be holding on to so much? They kept him overnight to treat an acute bladder infection, and then for another 2 weeks of rehab so that he could learn how to use an intermittent catheter and gain some upper body strength.

When he came home from the hospital in December, the weakness in his legs had spread to his trunk, requiring the addition of a hospital bed, hoyer lift, and commode to our apartment. We didn't have an accessible shower or tub, so bed baths became the routine. But the intermittent catheterization was not keeping his bladder under control, so in January he had suprapubic cystotomy surgery. That was probably the happiest day he had had since they drained the 2 liters.

Then there was the neuropathy that started in July. His feet were either burning or freezing, with periods of feeling like he was walking on glass. By the time he became wheelchair bound, the pain had spread to his legs and rear. [Conventional and alternative neuropathy treatments provided limited relief.]

February through April 2008 brought a plateau to the symptoms. Things weren't getting better, but at least they weren't getting worse.

One of the biggest frustrations with PPMS has been the lack of any recommendable course of treatment. With RRMS, you have your interferons and Copaxone, which reduce the frequency and severity of attacks. But none of these have proven to help him with his one big, neverending attack.

I almost wish this wasn't classified as MS. Everyone seems to know somebody who has MS, but we've yet to find anybody with MS who can commiserate with what we've been going through. The closest we've found was a social worker we met in January who had worked with a client with the same type of symptom progression. She was reluctant to give any details, but we were starving for any kind of insight into what the future may hold, so we insisted. She told us that the client's decline went on for 2 years before he passed away from respiratory failure. That information oddly gave us some comfort.

I am reposting it now as I am once again struggling with all the responsibilities. The last time, I was lead via the Carnival of MS Bloggers to Herrad's and Richie's blogs. Reading their story makes me feel not so alone.

And so I blog.

An anonymous coward is screwing with BR's treatment

We got a call from BR's pain management doctor this morning. Another unusual occurrence, since we usually work with his PA. Seems that someone has made an anonymous complaint to the state medical board regarding BR's treatment, and specifically the medications he is being prescribed. Because the complaint was anonymous, one of the possibilities in the doctors' minds is that we reported them. So it would seem that all BR's doctors have gone into CYA mode.

In my last post, I spoke of BR's pharmaceutical house of cards that maintains his quality of life. We would never do anything to put that treatment in jeopardy, but it seems someone else would. As a precaution, I've gone back and sanitized previous posts of doctors names. I'd like to continue discussing his treatment, but I'm having serious reservations.

If the complaint came from someone reading this blog, your actions have turned what was a cooperative doctor-patient relationship into one filled with suspicion. You have complicated what was already an extremely difficult treatment situation. I will speak of you no more.

A CYA visit to the neurologist

[post edited to remove specific drug names]

Thursday morning we got a call from the neurologist's office saying the doctor wanted to see us at 3pm that afternoon to discuss BR's medications. Now it normally takes 2 months to get an appointment with this doctor, so to have him call us in for a same day visit really got us thinking.

Could it have something to do with the latest MRI results? The pain management doctor had ordered a scan of BR's entire spine in preparation for the SCS trial. That put BR in the tube for a little over 2 hours last Friday evening. Did the results show something that necessitated a change in medications? Something awful? Something treatable?

Turns out the neuro was just worried that some of the medications on BR's list are contraindicated for people experiencing seizures. He specifically took aim at the XXXXX, XXXXX, and XXXXX. BR has good reason to be taking all three. XXXXX reduces neuropathy. XXXXX combats the mental fog caused by the high dosages of pain killers. XXXXX combats the loss of appetite caused by the XXXXX. BR's current quality of life is being maintained by a pharmaceutical house of cards, and oddly the neuro wasn't offering any alternatives for the cards he wanted to yank out.

By the end of the appointment, I had come to the realization that the neuro was not really wanting to change any of the medications. He just wanted to inform us of the dangers of some of the drugs -- something he forgot to do at our last visit -- and thereby cover his ass. He could have done that over the phone and saved us a trip to Round Rock. Sheesh.

Breaking out of isolation

Since arriving in Austin nearly six months ago, BR and I have yet to seriously work at building new friendships. Our existing support system of friends from all over the country have been great at sustaining our interpersonal skills. Still, as the months pass, I notice that we remain disconnected from the citizens of our new home town.

Back when we lived in San Francisco, I met people through work, as well as by volunteering at Magnet, a gay men's health clinic. BR made friends through his work as a school teacher. And we both have met some great people over drinks at the neighborhood bars.

Things have changed, and we need to find new ways to meet people with similar interests in our area.

For BR, we are considering an Adult Day Center as a way for him to get out and socialize while I'm working. They would have a nurse on staff, in case any medical issues should arise (read: another seizure). Of course we are a bit concerned that BR will be the youngest person there, but it might lead to additional opportunities for him. The social network has to start somewhere.

As for myself, I'm considering volunteering at a local public school. On days when he's up to it, BR and I could even do this together.

If you have any suggestions, send them our way! We'll keep you posted on our progress.

Gina is here!

Gina and BR met in the early Eighties at Louisiana State University in an art class. From the moment I met BR, he has described Gina as his Fortuna, referring to Ignatius' spiritual force from A Conferderacy of Dunces.

It is unusual when one person can share an interpersonal bond with another, but I feel just as close with Gina as BR. She's one of the few people I can really open up to. No judgement. Just insight. Anyway, I'm really glad she's here.

Spinal Cord Stimulation -- Next hope, or next disappointment?

We had an appointment with the neurologist two days after the failed pain pump trial. He keeps talking in terms of controlling lesion count and enhancement, when BR has never had any enhancing lesions; not even on his first MRI with contrast. And the lesion count has always been stable. I'm convinced that the standard relapse-remitting MS treatments are of little to no use.

So we turned the conversation to quality of life. The symptoms need to be controlled in the following priority order:

1. Unbearable pain from waist to toes.


2. Worsening loss of manual dexterity.


3. Stabilize weight

Focusing on symptom #1, he promised to consult with the pain doctor to come up with a plan of action.

On Tuesday, we met with the pain doctor. He and the neurologist recommend a spinal cord stimulation trial as the next logical step to control the pain. In the trial, they will insert two electrical leads into BR's spine, and attach them to a controller that will deliver pre-programmed electrical stimulation which should block the pain signals from being transmitted to the brain.

Here's where I get a bit doubtful. MS has been described to us as making the damaged nerves "act like crossed wires". A signal that was traveling up one neural pathway degrades in quality, and can actually end up on a different pathway. Given that the majority of BR's lesions are in the cervical spine, I'm having a hard time understanding how stimulation of the lumbar spine will help. I asked the representative from St. Jude Medical to provide any data they have on the effectiveness of SCS on MS patients.

Then I started digging around on the internet. Studies that I found show between 50 and 75 percent of MS patients who try SCS get symptom relief, but the one study that broke it down by the level of disability showed that patients who are already in a wheelchair are much less likely to benefit.

I guess we need to continue to think positively. Even a 50% chance of pain relief is worth a trial.