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.

When we showed up, we were asked to fill out additional paperwork for government records. This raises another question – did taxpayer money go to fund this virtual sales pitch? It seems as though this doctor just got Tysabri to put together a thing for all his medicare patients so he could get them in a room together and tell them there is no hope on any drug other than Tysabri.

The meeting started with him saying no one can tell you what drug to take, but the message that followed was very different. Essentially, the message was that interferons and betaseron are bad and don’t work and that the new oral drugs (Cladribine and Fingolimod) kill you with cancer and infections. That marijuana has no effect on MS symptoms and that people just like to get high. We were all but promised that people don’t die from PML and that MS patients no longer have any attacks once they’re on Tysabri.

Following the doctor/patient bullying session, the sales rep came over to give me his expert medical advice. The whole event left me seething. If I decide to take the risk and go on Tysabri it isn’t going to be the result of the 3 questionable men running the show last night. PML is a scary thing and no one should be mocked for fearing it. The statistics presented last night (if you can trust them) are that only about 1/4 of people on Tysabri who develop PML will die from it, but the rest will be left with permanent disability ranging from mild to the need for life support. 1/1000 Tysabri users will develop PML and your chance of developing it increases with use.

None of our options for Disease Modifying Drugs are great. They all have drawbacks. Rebif is only supposed to reduce my relapses by 30% and no one can say what the last 18 months would have been like if I had not been on it. I have less options for neurologists than if I lived in a more metropolitan area, but I now know another doctor that has made it to my never in a million years list.

I understand that pharmaceutical companies are businesses expecting to make money. Sometimes they fail spectacularly in creating a drug and future drug prices make up for it. Sometimes they are spectacularly successful, but it is still incredibly expensive to develop the drug and prices are affected by that. Even so, when Rebif representatives call me they want to know how my health is. They don’t want me to die from liver failure just so that they can sell more Rebif.

I have nothing against Tysabri. I may even have to switch to it soon.

I have been on Rebif for over a year, but I’ve had several attacks (although I don’t think I’ve had any new lesions). According to the sales reps there, Tysabri doesn’t help prevent MS attacks following viral infections, although he was adamant that if I had an MS attack for any reason on Rebif that it’s not controlled and I should switch to Tysabri. With Rebif, sometimes the injection pain is terrible and sometimes I hardly feel it. The real issue at hand is liver function. I’m borderline and monitoring this is becoming increasingly difficult.

As of 2010 my insurance company, Cigna, has decided that blood tests ordered by a neurologist do not follow normal coverage guidelines and must come out of my deductible. Therefore, one simple blood test for liver function cost me nearly $400. I’m not sure I know anyone who is willing to spend $1600 a year on blood tests if they can avoid it. There were years in college when that’s all I spent on rent!

If my liver function deteriorates and I decide to shell out another $400 to find this out, then my options are Copaxone and Tysabri. After last night, I’m leaning toward Copaxone, daily injections and all.

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.

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

Trials spark hope of pill for MS

Oral drugs to treat multiple sclerosis could become available in 2011 after promising results in two trials.

Drug licences have been applied for and the MS Society said it was “great news” for people with MS – current treatments involve injections or infusions.

The trials of the drugs each involved 1,000 people in over 18 countries, the New England Journal of Medicine says.

Cladribine and Fingolimod, which come as tablets, cut relapse rates by 50-60% over two years compared with placebos.

Fingolimod was also tested against the widely used injection, beta interferon 1a. The trial showed the new drug was twice as effective in reducing the number of relapses over a year.

“ The evidence is now there and we will be working with the relevant authorities to make sure those who will benefit can get access ”

- Dr Doug Brown, Biomedical Research Manager at the MS Society

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

One would marvel that the marriage lasted the first night. As I read this back to Sara now no one is more surprised than her that we made it past that first night when at my parents dropping off my Dad’s tux and she finds out Ben and Caitlin are spending the night. Our wedding night. Good god, what was I thinking. Fortunately our honeymoon was much better and salvaged my bumbling during our wedding. We spent 4 incredible days at Hidden Mountain Resorts in Sevierville, TN. Our ride up to Sevierville was treacherous and beautiful. It started snowing in the mountains of NC and things got cold and icy very quickly. The poor Montero had a time on the mountain hills and when we finally got checked in we were pretty much snowed in. It was a great time and just about the only real vacation we’ve had since we’ve been married. The few times we made it out were for a few nice dinners and games at some arcades near Pigeon Forge.

At any rate when we got home it was back to work and things weren’t peachy. Sara and I were poor and it sucked. We were living in Government housing and barely making livable wages. We both had insurance thanks to my job but things were uncertain as the company had just filed Chapter 11. Sara was working for her parents at their Frame Shop and making more than I was. I decided things needed to change and started looking for new work. Fortunately for me an old classmate from High School IM’ed me day and told me he could get me a job in Greenville, SC with Trivergent. Trivergent was a communications company that was having financial problems but were in the process of being acquired by Gabriel Communications in St. Louis, MO. I figured moving from a low paid job with no security to a higher paid job with slightly less security was a no-brainer and we packed up and moved to Greenville. Sara’s drive got shorter and I walked to work from a cheap condo we rented downtown Greenville on West Earle St.

During the early years of our marriage I honestly can’t understand why Sara stayed with me. Maybe she saw there was some raw potential there but at 21 I was insufferable. I thought I knew everything and never thought for a second before making it known. I’m convinced I drove away some people I was really close to because of my attitude. Fortunately she worked through the process of growing up with me and I learned the world wasn’t black and white and it was possible to see things from another perspective. We had long conversations about what we could do to improve our relationship. Sometimes we’d stay up and talk about it all night. (We did this about two weeks ago in fact!) At some point I decided I wanted to be a better person for her and started work on improving my less than desirable qualities. It’s not been easy but compromise is the name of the game. If you love the person you’re with don’t you want to be worthy of their love? Don’t you want the last thought in their mind when they fall asleep that they’re glad to be with you and not, “That asshole forgot to fold his clothes again?”

Things worked out and the new company became NuVox, Sara started working there, I was rapidly promoted, we both learned an incredible amount about telecommunications, the Internet, and mergers and acquisitions, met some terrible people and some of the best people we’ve ever known. In the last 9 years we’ve started two failed businesses but are still trying, moved five times, bought a house, bought two new cars, been introduced to the amazing Siamese breed, enjoyed a short time with our first Siamese, lived a melancholy and sometimes downright painful year and a half with our second Siamese and his bout with lymphoma, learned to live with Sara’s multiple sclerosis diagnosis, taken each other to the emergency room, and so much more than I could ever cram into one sentence. What have we learned from all of this?

When I look back on the last 9 years I’d say that demolishing the typical husband and wife roles has played the biggest part in keeping both of us happy. She’s my best friend, my confidant, my partner, my love. Not my cook, maid, chauffeur, dishwasher, or slave. I can wash the dishes or cook dinner and she can work 80 hours a week and bring overtime when we need it. I don’t own her and she doesn’t own me and neither of us does these things because it’s, “the husband’s/wife’s job.” We do them because they have to be done and we understand how it feels when you’re doing them by yourself and the other person doesn’t help.

At the end of all of this exposition I can sum up the key to our successful marriage in one sentence. This is not all about you; don’t be a selfish ass. I think far too many people forget that in a marriage you can’t always control what the other person is going to do or think or feel and you have to be able to truly understand and live with that, rational or irrational it may be. It’s all about the patience and willingness to learn, understand, and grow with your partner.

I know you all probably read this far hoping that you’d get some quick and easy tips to make things better at home so I won’t stiff you. For 9 years here are 9 things that have made things immeasurably less tense in the evenings:

1. Mint – Until the end of 2008 Sara managed the finances by herself. She did a great job on her own but she couldn’t say no to me and I had no idea what our finances looked like. At the end of 2008 when she was diagnosed with multiple sclerosis she made me sit down and look over them with her and I promised I would be more involved so she wouldn’t feel like, “mean mommy,” when she had to say no. Mint let us import all of our financial accounts into one portal where we could quickly and easily extrapolate where our money was going and what we needed to do to get our finances working better for us. If there’s a better tool out there I haven’t seen it yet.
2. Dishwasher – Moving into a place with a dishwasher eliminated the biggest point of contention between us. Who’s doing the dishes? You might not think about it much but consider this; doing the dishes for a regular meal that you cook for two people takes just about as long as when you cook for 4-5. You typically use the same amount of pans, skillets, measuring cups, etc. as you would for cooking a larger meal and these are the things that take the longest to clean. Buying a dishwasher gets you back 45 minutes to an hour of time every evening you’d otherwise spend washing dishes after a meal. Over the course of a year that’s about 15 days of time each year you could be doing anything else.
3. Keeping each others secrets – If I told you my wife would kill me…
4. Cats, cats, cats, cats, cats, cats, cats, and more cats – They are ridiculous, loving, fun, and they lower your blood pressure. You can also blame them when someone passes gas.
5. CatGenie – Seriously, with all those cats, who really wants to scoop litter? Let them use their own cat toilet.
6. Working Cars – So many other things are broken, do you really want to be stuck in the house when your air conditioning is broken because you wanted to save $500 at the dealership?
7. Comfortable Bed – It’s hard to be mad at each other when you’re falling asleep in a comfortable bed
8. A great sense of humor, especially about each others’ neuroses
9. Common Enemies – Fighting against a common enemy or problem is the first step towards working together!

EPILOGUE FROM SARA, WHO JUST DISCOVERED THAT SOME OF HER FAMILY MEMBERS READ THIS.

Hi everyone! Silly Will — I’m actually a virgin and have never even tasted alcohol. Love you!

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.

For the newly diagnosed:

• Find a neurologist you like and trust. Don’t be afraid to switch.
• Most of your problems are invisible – don’t expect anyone to understand (sorry).
• Whatever feels unbearable right now will probably pass.
• Watch the webcasts, listen to the podcasts, and get Momentum magazine.
• Stay out of the heat at all costs.
• Holistic remedies are not proven to be effective. If it sounds crazy it probably is.
• Neurologic problems and muscle relaxers often lead to sleep apnea.
• Common MS symptoms are : fatigue, lack of balance, random pain from innocuous stimuli, spasticity, blurry vision, vertigo
• There are several types of MS. Relapsing-Remitting means you have an attack and then heal to some degree. Progressive means you have a gradual loss of ability that does not heal. Some people with relapsing-remitting will then develop progressive MS
• Deaths resulting from MS are usually caused by liver failure resulting from Interferon or by infection due to lack of mobility. In general your lifespan will not be shortened.
• You absolutely will never get the reaction you expect or desire when you tell someone about your diagnosis.
• No two people with MS will ever have more than a passing similarity of symptoms or progression.
• Caffeine makes all symptoms worse.
• You will eventually develop a sense of humor about what you’re going through. That doesn’t mean you won’t freak out from time to time.
• Cats are good for people with health problems. Really. My neurologist has a whole poster up about it.
• Everyone needs a “care partner.” Will has been amazing to me. Amazing.

I had dealt with spasms in my right eyelid for about a year when I went to my optometrist.  She decided that it was more than just stress and referred me to a lid specialist who treated me with 3 sessions of Botox injections over the course of nearly a year. Every time the Botox wore off the spasms would start again, so we pursued an MRI to check for nerve damage. I have a family history of MS – my father has it as well as 2 of his sisters.  The lid specialists said that he had about 20 new patients every week who needed Botox injections to stop those pesky eye twitches and none had ever had MS.

Being extremely claustrophobic I requested an open MRI. Having now had both an open and closed MRI I just recommend the closed one. Open MRIs are really not that “open” and take less detailed images. The MRI takes a long time, the contrast fluid feels terrible, and when you ask the tech if they see anything unusual they will lie badly. The best description I can give you of the sound is that it reminds me of some industrial music I’ve heard. You have to keep your mind occupied during the hour or two you’re in an MRI – being fascinated with myths I think I told myself the story of Isis and Osiris both times.

When I filled in the pre-MRI paperwork there was a list of things that can be caused by the contrast fluid – difficulty speaking, walking, etc etc. As I got out of the machine I felt immediately odd and discovered that when I tried to talk I couldn’t pronounce words correctly. Over the next few days my pronunciation deteriorated as did my handwriting and balance. From an outsider’s perspective I’m sure I seemed drunk. I began to think this was more than just the contrast fluid. We went to Virginia to visit Will’s brother, sister-in-law, and newborn nephew that weekend and I found myself having trouble with everything from brushing my hair to applying mascara. I was afraid to hold the baby much in case my arm betrayed me. On the drive back my arm suddenly became weak. Within the next 2 days I had paralysis in my right arm and hand and in parts of the right side of my face.

When I returned to work I was faced with a voicemail confirming my MS diagnosis, a referral to a neurologist, and an email sent to my employer’s mailing list about a coworker whose wife had taken her own life because of MS.

Filling in endless paperwork is great fun with a mostly paralyzed hand. The best way I can describe this is if you’re holding the eraser end of a 2 foot long pencil. Typing and using a mouse were nearly impossible, no one could understand me when I talked, and I couldn’t write legibly. Communication was difficult for weeks. My initial research told me that MS was a painless disease and that it doesn’t decrease your lifespan. That people who live near the equator don’t get it. That 15% of people with MS commit suicide. That 400,000 people in the US are diagnosed with it. Don’t tell your boss about it, and don’t expect anyone to give you the reaction you want when you tell them about it. There is a difference between MS symptoms and an MS attack. MS Symptoms : fatigue, lack of balance, random pain from innocuous stimulus, spasticity, blurry vision, vertigo, etc. MS Attacks (or exacerbations) : When a new, more permanent symptom occurs suddenly and lasts for more than 24 hours (like paralysis, muscle weakness, blindness, etc). I learned that there was something called an “MS Hug” but couldn’t figure out what that was. It sounded cute!

I had to tell my boss. I would be fired unless I explained why my productivity halted and I seemed drunk. MS is a TOTALLY painful disease. And a recent study reports that about 1 million people in the US have some form of paralysis from MS, so there must be far more than 400,000 with it. The first worry I had was that I would be such a burden on my husband. How long could I work? Only 30% of people diagnosed with MS can work, and even if I could how much worse will his life be with a disabled partner? My father has MS and so do I. Will my brother be the next to be diagnosed with it? My nieces? Then I worry about healthcare. When something like this happens to you the health insurance industry looks VERY different very quickly. I find myself with a huge crush on Britain’s healthcare system. Since Obama’s election stem cell research with regards to MS has made vast leaps. What happens next election if it’s suddenly banned (again) and our greatest hope for a cure vanishes (again)?

My first neurologist was terrible. He was dismissive, unhelpful, rude, and racist. After my first appointment with him he had me begin a steroid infusion on-site. The Solumedrol burned like fire going into my veins and made me taste metal for hours afterward. As I walk out I grab what looks to be a very encouraging publication on MS. Turns out a woman is celebrating all that she’s gained from a life of MS : a husband who has been there for her after she lost her house, most of their furniture, turned to welfare, and she can no longer leave her bed. Whoever approved that article needs to be flogged.

As new nerves began routing I could gradually speak more clearly and write a little better, but progress was like watching grass grow. Suddenly my fancy new nerves went mutinous. While I didn’t have strength enough to hold up a toothbrush with my right hand I would have a cramp that would close my fist so hard I made my own palms bleed. When I was in crippling pain 5 – 7 times a day with unbearable muscle cramps all down the right side of my body he shrugged and said maybe we could do another MRI. Then he found occasion to make fun of Native Americans after noticing on my chart that I am part Cherokee.

I discovered there was another neurologist in Greenville and promptly switched. I love my neurologist now. He reviewed my MRI and told me I had 4 lesions but that I should get a spinal tap to ensure that my insurance would pay for treatment. He prescribed Baclofen (a muscle relaxer) for the muscle spasms.

The spinal tap was interesting. I thought it would be quick but it was not. He made sure Will was sitting down because apparently husbands tend to faint during the process. He painted my back with something – iodine maybe? He joked about how he was a great target painter. I asked how his aim was. He said not to worry about that. Spinal taps feel crazy. Having a needle jammed between your vertebrae feels exactly like having a needle jammed between your vertebrae. The metal conducts electrical signals which shoot down your legs. You have to wait for fluid to slowly drip out until several vials are filled. Spinal fluid is basically blood without the clotting agent. With no clotting agent it takes a long time to heal and may continue to leak out after the tap. This is why headaches are common after this occurs.

Baclofen was a mixed blessing. Starting it caused the cramps to worsen dramatically. In one day it happened over 30 times before I went to the ER. After ramping it up for several weeks I still had muscle spasms and cramps, but not in the unbearable way I had before. It made me drowsy and loopy. I fall asleep multiple times a day and it was a month before I could safely drive a car. I began taking Rebif which is a disease modifying drug. This means it lowers the occurrence of MS attacks (by about 30%). Without insurance coverage this would cost me about $7000 for a 3 month supply. With insurance it costs $200. They sent a local nurse out to show us how to use it, and it comes with an auto-injector. Feels like a bee-sting going in, burns like poison once it’s under the skin. The injection sites look like I’ve been hit by a baseball. I give myself injections Sunday, Tuesday, and Thursday. The cats have learned to stay upstairs while I do this. Will has learned to wait till it’s over to ask if I’m okay.

Progression was very slow. Over time my handwriting returned to something like normal. Because I was using new nerve routes, there were times when addressing an envelope or writing out a check left me breathless and exhausted. I had been damn good at guitar hero (in my humble opinion) but my lack of coordination now relegates me to Easy Mode. I realized how much time I had wasted not writing, playing piano, drawing, etc. when I had the ability.

In autumn I finally learned what the MS hug is and it is not cute. It feels like you’re being squeezed to death and the pain is so intense it causes me to vomit. I nearly cried with joy in the ER when they brought out a tray of 7 (SEVEN!) mystery vials to knock me out with. I never even felt them put in my iv. The cure for the MS hug? Lots of Valium. Lovely, lovely Valium.

Less than a year after my first attack, which apparently began literally inside the MRI machine, I had a second attack following a bout with the flu. Apparently the flu often precedes an MS attack. This time it hit my right leg mostly which leaves me unable to walk far. Instead of having on-site steroid infusions I was sent to St. Francis for it. They are great. You get a nice little room with a TV and they dilute the stuff in a solution which isn’t painful at all and hardly tastes of metal. My recovery thus far has been like lightning compared to my first attack.

That brings us up to speed. It’s not fun to live with and, at least for me, the daily symptoms are more of a nuisance than the exacerbations. There are things I can do to help myself that I don’t. But I’m going to. New Year’s resolutions usually fall by the wayside, but here goes anyway :

• Regularly practicing hatha yoga improves balance and reduces spasticity. Mindfulness exercises such as this also improve your outlook and focus in daily life. I will (for real this time) start a yoga routine.
• Meditation and guided imagery help reduce the stress and improves the mental outlook for those with MS. I will (for real this time) start a meditation routine.
• Eating certain foods that reduce inflammation may contribute to less frequent MS attacks. I will (for real this time) start following a diet.
• Stress can lead to psuedo-attacks. I often joke to Will : “Don’t make me angry! You wouldn’t like me when I’m angry! My vision goes blurry and I fall down a lot!” I shall strive for apathy when people let their toddlers wander into the street or bicyclists scrub my car when weaving through stopped traffic.

Hopefully these changes will help slow my progression of the disease. More information is available on almost a weekly basis about MS, and misinformation is probably even more common.  As I weed through it all I will post the gems here. Let’s all hope for a cure soon — or even three!

National Multiple Sclerosis Society

The 2009 Carolinas Consortium on Multiple Sclerosis is next Saturday November 14th in Charlotte at the Westin Hotel. This event is run by the Mid-Atlantic Chapter of the National Multiple Sclerosis Society.

The consortium will run from 8:30 AM to 3:15 PM and features some great workshops, lectures on new and developing breakthroughs in multiple sclerosis treatment, and a catered lunch with a speech from a nationally recognized researcher in the field of multiple sclerosis.

The cost to attend is $12 per person (includes the cost of the catered lunch) and it sounds like the workshops and lectures will be extremely informative.

There will be two workshop sessions and you can choose to attend one workshop from each session.

9:30 AM – 10:30 AM Sessions:

(1A) Mood, Memory and MS

Presented by Jill Conway, MD, MS Specialist, Carolinas Medical Center
People with MS often experience problems with cognitive skills such as problem solving, language and memory. Learn why this occurs and what interventions and treatments can help.

(1B) Nutrition and MS

Presented by Nada G. Abou-Fayssal, MD, Clinical Assistant Professor of Neurosciences, MUSC
The role of nutrition in overall wellness has been well researched. Should people living with MS follow the same nutritional guidelines as others? Learn how what you eat can affect your quality of life.

(1C) Symptom Management

Presented by Michael Kaufman, MD, Director, MS Center, Carolinas Medical Center
The symptoms of MS are wide ranging – from fatigue to numbness to vision to cognition problems. Learn about the latest interventions for managing symptoms to improve daily living.

(1D) 411 on MS: For People who are Newly Diagnosed

Presented by Kym Orsetti Furney, MD, Internist, Mecklenburg Medical Group of Carolinas
When the diagnosis is MS, questions abound. What can I expect? How will my life change? What’s the next step? Learn about the disease, medications, lifestyle changes, relationships and much more.

11:00 am – 12:00 pm Sessions:
(2A) Pain and MS

Presented by Mary Hughes, MD, Neuroscience Associates, Greenville (SC) Hospital System
Chronic pain is not unusual in people living with MS. Learn why it can occur, how it can impact your day-to-day living and what doctors recommend to manage it.

(2B) Research Updates

Presented by Jill Conway, MD, MS Specialist, Carolinas Medical Center
MS research is being conducted all across the country, with many trials in the Mid-Atlantic chapter area. What new medications are in the pipeline? What are the latest theories about the cause? Are we getting closer to finding a cure? Get the latest information.

(2C) Participating in Clinical Trials

Presented by John Absher, MD, President, Absher Neurology
Many physicians in the region are recruiting people with MS to participate in clinical trials. Should you be one of them? What questions should you ask? Learn more about the benefits and risks and what’s expected when you participate in a clinical trial.

(2D) Get Your Camera in Focus: Keeping an Eye on MS

Presented by Tariq Bhatti, MD, Ophthalmologist, Duke University Medical Center
MS can cause problems such as blurred vision and double vision, both frightening symptoms to cope with. Learn how MS impacts vision and the latest interventions.

The address for the Westin Hotel is:

The Westin Hotel
601 S. College Street
Charlotte, NC 28202

Welcome to Collier-Byrd.net. Sara and I have been meaning for awhile to put up a web page to collect photos for family and write about our various interests but I can be a terrible perfectionist and spend way too much time getting something suitable before I ever (or never) get around to using it.

This time I’ve decided to try something different and put up a WordPress site, start posting, and we’ll work out the bugs as we go. I think we’ll actually get use out of the page this way and work on the non-content pieces when I have time.

As I said, the original idea was to collect some photos for family and friends, but we also have a lot of interests we’re planning to cover. Sara was diagnosed with multiple sclerosis last year and we have been doing a tremendous amount of research about the disease. As her father’s side of the family has a history of the disease, it wasn’t at all unknown to us, but suffering from an auto-immune disease is a lot different from knowing about it as a result of family, friends, or acquaintances learning to live with one. Sara really wants to compile a lot of the information we’ve found and relay her personal experiences living with MS to date in hopes it may help others who know someone with MS or people who have been diagnosed that are learning to cope with it. The side benefit of this will be to (hopefully) raise awareness about the disease.

My primary focus for the foreseeable future (other than MS) is working through several professional certification tracks. I have been working for ISPs and Telecommunications companies for the better part of the last 12 years now and while I do have a lot of on the job experience and more than a fair bit of knowledge about the Internet and how it all works, there’s definitely no shortage of new things to learn. I’m currently CCNA certified (Cisco Certified Network Associate), and working towards my CCIP (Cisco Certified Internetwork Professional) and CCNP (Cisco Certified Networking Professional) certifications. At some point, once I finish these two certifications, I am planning to work on the service provider versions of the JNCIA (Juniper Networks Certified Internet Associate) and JNCIS (Juniper Networks Certified Internet Specialist) certifications to round out my experience. When I finish all of this, depending on what I am spending most of my time working on (Cisco or Juniper gear) I’ll look into pursuing one of the IE (Internet(work) Expert) paths. As I’ve got at least a year or two of work in front of me to get to a point where I am choosing an IE path I don’t want to get too far ahead of myself but I definitely want to have a rough timeline in my head to help moving me forward. Part of my learning process is putting together training materials presented in a method that clearly conveys the concepts and ideas I am studying, so I would say that you should expect to see a lot of boring and very technical information about Cisco and Juniper routers as well as different routing protocols, RFCs (Requests for Comments), and IETF drafts on emerging technologies.

Outside of career and health related pursuits Sara and I would like to travel. To start we will probably take day trips on the weekends to see the things we can reach in a day’s drive. As we run out of things to see in a day’s drive we’ll probably start flying. Eventually we would like to see all of the US and plan trips overseas. There’s so much to see and do and we’d like to do as much as we can while we are young. We’re hoping to put together photo diaries to track our travels and we’ll be posting them here. Our first big trip will be to Yellowstone for two weeks at the end of July next year when Sara’s uncle retires. Her aunt and uncle are taking their family out to Yellowstone for a group trip so we’re already planning our days and hoping we can make the most of it.

At any rate I don’t want to put together any kind of gigantic list of everything we’re planning or not planning to do with the site. We hope it will grow organically as our interests and tastes evolve and change and with any luck, you’ll be here with us for all of it.