Three weeks ago, I attended UT Southwestern’s 2010 Rare Neuroimmunologic Disorders symposium in Dallas, Texas. At the time, it seemed like three long days of sitting in ballrooms listening to medical jargon for eight hours a day; my rear end and brain hurt by the end of each session. But somehow, like Rituxan, I knew it was one of those things where I had to suck it up because in the end, it would be good for me.
When we first heard about the symposium, John had said that the more we know, the better we’ll be equipped to deal with the future. So despite the time and efforts and money it took, we showed up, laptops in tow–mine for note-taking, John’s for amusement should he get bored. (And if you know us, both were inevitable.) The symposium was broken into two sections: the Basic Science side (for physicians and researchers) and the Clinical side (for patients and their caregivers). I mostly attended the Clinical portion except for one discussion regarding stem cell therapy done on the Science side by Dr. Richard Burt from Northwestern University.
After the long weekend, every time I was asked, “So how was it?”, I answered honestly: “Good, I guess. I don’t know. It was hard to sit through all that medical talk.” In truth, I was still digesting all the information–and boy, was there a lot to chew on. I’m not going to bore you with everything I learned. But I must say, in retrospect, I’m really thankful I had the chance to go. I met fellow patients with whom I now keep in touch, some whom I will see again at the 2010 NMO Patient Day in November. One such person I met attended the symposium alone. Her name is Brenda, and she approached me just as I was exiting the restroom. Out of the blue, she asked me about my case, my vision loss, my story. We ended up speaking at length, and when I introduced her to John, she thanked him for being such a supportive husband and taking me to this and sitting through it all. When we told her we were newlyweds, she actually started crying.
“I thought I would have to get better before God would give me a husband, but it brings me such joy in knowing that God loves you so much, he gave you one even after all this happened.” She gestured toward my white cane.
It turns out she is a reverend, and now John and I are on her international prayer list. Thanks, Rev. Bren.
And then there were inspiring stories I heard. Like Jim Leuben, the TMA webmaster. He wasn’t able to attend the event, but he was the one who sent out elaborate emails rallying people to get on board and attend the symposium. I learned from other attendees that Jim is a quadriplegic and does all his emailing and coding by blowing Morse code through a straw. How inspiring is that? So next time all you web developers out there complain about having to code something, think of Jim.
In addition to meeting patients–some coming from as far as Sri Lanka–I spoke to doctors (including Dr. Wingerchuck from the Scottsdale Mayo Clinic who saw me three years ago), nurses, and therapists. I even joined the Accelerated Cure Project (which I’ll blog about soon). The lectures, albeit at times tedious, were incredibly informative. Here are some of the highlights:
- There is some great work being done out there using stem cell therapy (“transplant” is actually a misnomer, and when I blog about this, I’ll explain why) to reverse disability for patients whose spinal cords have been damaged due to these demyelinating diseases. We watched videos of patients who had been restricted to wheelchairs for a year or more, and after the stem cell therapy, they were able to walk and even run again. (This is why we must support stem cell research–more on this soon.)
- Medical marijuana is used as an alternative treatment for neuropathic pain and spasticity (which Botox is also used to treat), common ailments of those with demyelinating diseases. (Maybe all the states will eventually legalize this?)
- There is still no answer as to whether these autoimmune diseases are genetic or environmentally triggered, although scientists believe that people who develop such diseases were: (1) genetically predisposed to it (i.e. they were born with the “correct” genetic makeup for developing the disease); and (2) environmentally exposed to it (i.e. something in their environment triggered the disease). There is still no clear evidence as to what these environmental triggers are; they used to think it was canine distemper, then measles, then it was the Epstein-Barr virus (so don’t share drinks with anyone!). (As for me, I probably had the greatest chance of getting NMO anyway–I had/have dogs, had the measles, and have shared drinks with others. Doh.) But scientists still don’t have any hard proof of anything.
- Autoimmune diseases have increased exponentially since the 1960s, and the rate of diagnosis is only increasing in women. Why? Nobody knows. But it’s important to note this because then scientists can pinpoint causation which leads to prevention which leads to cure.
- Speaking of genetic predispositions, there exists a mutated gene that some people possess which prevents them from ever developing HIV regardless of exposure. This is not to say go behave recklessly. But I found this tidbit interesting nonetheless.
- There are two things that your body can tell you that requires an immediate response: (1) I’m thirsty, and (2) I’m tired. Once you feel either of these things, it’s already too late–you’re already dehydrated, or you’re already lacking rest and relaxation. Many people with autoimmune diseases suffer from fatigue, and it’s hard because we often look fine on the outside, and others don’t understand or, worse yet, don’t believe us. Regular sleeping habits are crucial for managing fatigue; this means going to sleep the same time every night and waking up the same time every morning, seven days a week.
- Neuropathic pain is apparently very common. Thank God I’m not alone in this! I used to wonder why I got this debilitating pain shooting through my back and sides. Now I know these pains are caused either by infection, sleep deprivation, lack of exercise, and/or poor diet. I am probably always guilty of the latter two, but I have noticed that my pain pangs often follow an acute illness or several nights of unrest. Before this symposium, I sort of figured that out on my own and so would do my best to avoid sick people. And at the onset of any pain, I immediately took some Vicodin and ordered myself to bed. Now it’s just nice to know there is reasonable evidence behind my doing so.
- 50 percent of MS, NMO, or TM patients will suffer from clinical depression at least once after diagnosis.
- Just like the “coke” in Coca-Cola was once cocaine, the “up” in 7-Up was once lithium.
- With each recurring bout of bladder dysfunction I’ve had over the years when I had to have a foley catheter tied to my leg because I couldn’t urinate on my own, I have more and more trouble peeing normally. (TMI? Too bad. This is a blog about my experiences and conditions after all, and I’m going to be damn candid about it.) Sometimes it takes me a while to get started. I learned here that I have sphincter dysinergia, a condition when the sphincter muscle responsible for opening and closing the bladder malfunctions and clamps down before the urine flow is finished or even before the flow could begin. (Like the neuropathic pain, I was simply happy to at least know I was not alone in my symptoms.)
- And if you’ve read this far, here is perhaps the most interesting tidbit I picked up at the symposium: depending on which month you were born, you are more likely to develop certain things. If you are a May baby like me, you are more likely to develop MS. February like John and Joy? Allergies (and yes, they both have allergies). April? Suicide. August like my cousin Pauline? Asthma. September babies are more likely to hemorrhage in the brain. November babies get brain tumors. December? You are most likely to live to 105. Merry Christmas.
So while I knew a lot of what was discussed at the symposium (most attending patients are highly informed about their condition), I still learned a lot. So now if I was to be asked what I took away from all this, I can answer, “I’m thinking about switching neurologists.” [Cue dramatic music.] (to be continued)