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Will & Sara
Adventures in Neurologists Peddling Pharmaceuticals
May 13th
Tysabri : A picture is worth $6900!
My parents assured me that although they’ve gone to many MS events they had never been to a spectacle like this before.
Last night I trekked down to the basement of a branch of the AnMed hospital in Anderson, SC to attend an MS event my parents had alerted me to called Dialogue of Hope and Health. I can’t deny that I was hoping that the “hope” in the title of the event referred to the new oral medications soon to be available (at least in other countries) or perhaps stem cell developments. It turned out to be something between a sales pitch and damage control conducted by a local neurologist and a Tysabri sales rep.
In my opinion, it is a questionable ethical choice for a neurologist to invite his patients to a deceptively named seminar to be pitched to by a drug rep with only negative statements about alternatives and without providing a forum for the other MS DMD manufacturers to respond to allegations leveraged by the doctor and rep or to the questions posed by the attendees.
Tysabri is a relatively new drug, and I doubt my neurologist has more than a few patients on it. This neurologist does not specialize in MS but still drew what appeared to be at least 40 Medicare patients all on Tysabri out on a Wednesday night to wander around a hospital until they found the basement conference room. He said he organized the meeting (I wasn’t aware he had organized it until it had started) to eliminate some questions floating around. In other words, to get his Medicare patients to shut up about taking “medication holidays” and switching from Tysabri.
The Book I’ve Been Waiting For
Mar 19th
Your Money: The Missing Manual
In the past weeks, Will and I have found ourselves busy with a variety of things. Will was quite sick for a few weeks but seems to be mostly better now. I have been going haywire trying to finish cutting out all possible medications that I’ve been on since my diagnosis. We’ve been planning out some home improvements that will eventually help sell the house one day, and as a result have been poring over paint samples, hardware ideas, etc. We have been adjusting to changes with the recent Windstream acquisition. We have managed to cut out about a third of our book collection for donation. And last, but not least, I’ve had another MS attack (my 3rd since December of 2008). Not much could jar me from dwelling on all of this to come out for a blog post, but today I realized how close we are to the release of a book I’ve been looking forward to for a long time.
For the better part of our marriage (and lives) Will and I have been exceedingly unconcerned with money. Not because we had it, but because we saw it only as one of many tools in life for happiness. This has gotten us into a bit of a mess from time to time. As we’ve written before, my MS diagnosis and Vlad’s battle with cancer gave us a few epiphanies. Having money saved and using it for security and happiness is far preferable to having debt and striving to not dwell on it. Imagine that. We’ve been following the Get Rich Slowly blog for awhile and have learned a lot from it. The author, JD Roth, has finished his book, Your Money: The Missing Manual, and it will finally be available on Saturday. We have anticipated the release of this book for some time and can’t wait to read it. While we have used a lot of resources (family members, websites, neighbors, friends) to find out practical advice to change our financial state, I can state with certainty that Get Rich Slowly has had more influence and has been more helpful than any other source. Hands down.
There are a lot of blogs and ideas out there for getting your finances in order, and even more scams to screw you up more than you thought possible. Will found GRS and we became hooked. The site is full of great advice from someone who started out as a normal person, deeply in debt. He worked hard, changed his habits, and pulled himself out of the hole. He went on to learn a wealth of very practical information about savings, investment, frugality and more.
Once we’ve finished Your Money: The Missing Manual, I’m sure we’ll have more to say. Based on our experiences following Mr. Roth for the past few months I know we will have nothing but praise.
Oral drugs to treat multiple sclerosis could become available in 2011 after promising results in two trials.
Jan 21st
Interferon injections are more than unpleasant.
I am so glad I make a habit of reading BBC News daily as US news agencies frequently skim over important things in favor of the shocking or violent. Today they published a story about new oral multiple sclerosis treatments that are likely to be available in England in 2011. As someone whose liver does not particularly like Interferon and is afraid of the risk of death from Tysabri infusions this might be a godsend. Since interferons are not available as generics (they contain living organisms and are exempt from status that would let them ever become generic) this could open inexpensive and more successful treatment options to a host of people who have no option but to live with the effects of the disease untreated. The full article and link to it are pasted below, but here is the basic information you want:
- The oral drugs in question are Fingolimod and Cladribine
- The drugs are considerably more effective at reducing relapses than current available treatments
- The drugs may increase your chances of herpes and cancer
The Secrets to a Successful Marriage
Jan 19th
Will & Sara at McPherson Park in Greenville, SC
As of today Sara and I have been married for 9 years! It’s been a long road and I can’t believe all of the things we’ve seen, said, and done. Some days I feel like we’ve always been together and others it feels like no time at all. One thing is for sure, I am the luckiest guy in the world.
On January, 19th 2001 we piled into Sara’s white 1991 Mitsubishi Montero with Ben Chabot and his then fiance Caitlin and drove to the Little Wedding Chapel in Easley, SC. I remember our family and friends packing into the woefully small chapel and laughing with us through the next 30 minutes of comedy gold.
Highlights:
- Meeting the minister minutes before the ceremony in his bright yellow plaid suit and matching bowtie; (un)fortunately(?) he wore a robe for the ceremony
- Sara’s mother thinking that her father had already, “given away the bride,” but not heard it as he is somewhat deaf and whispering very loudly while crouching and tugging on him to sit down
- Sara and I being forced to stand and bend uncomfortably over the kneeling bench we asked be removed several times. That’ll show them! We’ll stand and bend over you uncomfortably!
- The operatic rendition of the lords prayer with trademarked country twang played on a cassette deck that had the entire chapel in peals of laughter by the end
- My botching of my vows, “with this ring I be wed…,” WTF was I thinking?
- Being trapped with my Grandmother Byrd during the reception who I believe was still convinced that I was either gay or had impregnated Sara and was forced to marry her; I still cannot understand how these conflicting ideas can occupy the same place in anyone’s head…
- Sara being trapped during the reception with a mutual friend who had been gone all summer and was desperately in love with her
- Sara’s Dad is the spitting image of Norm Abrams. I’m not kidding. My Grandfather Wayne is quite the furniture builder and artist and was convinced we had no small celebrity on our hands and felt compelled to introduce himself and discuss his love of the New Yankee Workshop. Both men are slightly hard of hearing so the conversation went something like this:
Grandfather Wayne: “I’m Hugh, Will’s grandfather.”
Sara’s Dad: “No, I’m Sara’s dad, Jerry.”
Grandfather Wayne: “No, I’m Hugh, Will’s grandfather.”
Sara’s Dad: “No, I’m Sara’s dad, Jerry.”x20 or so until Sara walked up and straightened them out…
- Being pelted by birdseed so hard it left marks and Sara shaking birdseed out of her over styled hair for about a week after
- Leaving the wedding with Ben and his fiance to head home for champagne
- Champagne had been left in the freezer by someone and exploded into champagne slushy
- Going to Nick’s Tavern to drink with some friends when your freezer is full of champagne slushy
- Getting almost too drunk to consummate your marriage and finally managing it way too late above the heads of your best friend and his fiance who for some reason were spending the night
Multiple Sclerosis : Year One
Jan 16th
MRI images from the side make you look like a monster!
My first year of MS diagnosis wrapped up about a month ago and I’ve been reflecting on all the randomness and misinformation about the disease. As a lot of things in my life begin to come together (I’m growing up finally!) I find myself mourning the diagnosis more now than I did initially. Here comes the first downer post of 2010!
No one knows what causes MS and there is no cure. The idea of the cure is threefold: 1 – prevention of the disease, 2 – prevention of further progression of the disease, and 3 – reversal of disability caused by the disease. Theories are that those genetically prone to it may have it set off by exposure to a virus (probably the Epstein-Barr virus), that is is solely due to a vitamin D deficiency, and that a vascular disorder causes a backup of blood that leads to iron deposits in the brain. At any rate, the effect is that the immune system attacks the central nervous system, destroying myelin and the nerves that it protects. About 3/4 of all those diagnosed with MS are women.
