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Multiple Sclerosis (MS) is widely thought to be a disease of immune dysfunction, whereby the immune system becomes activated to attack components of the nerves in the brain, spinal cord and optic nerve. New information about environmental factors and lifestyle are giving persons with MS and their health care providers new tools...

The post Living with multiple sclerosis appeared first on OUPblog.

This title sounds fancy but mostly I needed to play catch-up and this seems like the best way to do that. Hi. In the past month I’ve done two public speaking type things that went well and some other stuff. I’ve been remiss in sharing them in a timely fashion. So now I’m sharing them in a list fashion.

• I went to Mississippi for the MLA Conference which was a great time. I led a facilitated discussion pre=conference which is the first real time I’ve done something like that. You can read the slides here: The Digital Divide and You which includes input from the discussion part of the afternoon. I stuck around for the conference and was very glad I did. I put some photos up here. Thank you MLA, the Mississippi Library Commission and especially MLA President Amanda Clay Powers for showing me a good time.
• VLA hosted a table at VT’s first annual ComicCon. This was a hugely fun event and terrific for library outreach. We had free stickers and reading lists, a display of banned graphic novels and people could get their photos taken in our “Vermont Comic Reader’s License” booth which netted a ton of delightful photographs (more on facebook). We also sponsored one of the special guests — Dave Newell, Mr. McFeely from Mister Roger’s Neighborhood) and he did storytime at the booth with puppets. I staffed the table one of the days. Such a good time. Huge shout-outs to other planners: Helen Linda, Sam Maskell and Hannah Tracy.
• Another MLA! This time the Massachusetts Small Libraries Conference (also the “first annual”) and I was the keynote speaker talking about how to Future-proof libraries. A combination of talking about what the challenges and unique positions small and rural libraries are in as well as some ways to nudge people towards getting interested in the online world. Notes and slides here. Big thanks to the Massachusetts Board of Library Commissioners & the Massachusetts Library System.
• I started writing for The Open Standard, Mozilla’s new online-writing thing. My first article, After Some Victories, the Time Has Come to Legally Define ‘Fair Use’, has been up for a while now. I’d love to know what you think.
• Also I’m not sure if I was explicit in my “I’m moving on” post about MetaFilter but I’m still at least somewhat looking for work. I love Open Library and my local teaching but I’ve got a few more hours in my schedule and would be happy to do some more speaking, some consulting or some writing. I have a one-pager website that summarizes my skillset. Feel free to pass it along to people.

I gave a really quick “How to do an elevator speech” talk after lunch at MLA (the one in MA, not the one in MS) and it was really fun. All librarians should practice their elevator speeches. Here’s my one slide from that talk. You can probably get the gist of it.

They--rreree---heeee--rerree. At least they were here. Touring The International UFO Museum was a little beyond the kitch-fest I expected. Biggest surprise for me was all the first hand accounts of what exactly happened all those years ago in Roswell and there was this I-beam. Well, the best part about the museum was their desire for visitors to put the pieces together for themselves. Incident is such an fascinating word. Not used very often, and, when it is, seems like there's always something a little controversial going on. Words with attitudes. Note to self: must use more of those types of words.



Most unexpected treat? The great lunch we had at the Mexican dinner down the street, El Toro Bravo Restaurant. Good food and friendly. But the guys in the booth behind me who wanted to buy us beers creeped us out a little bit, it wasn't their lack of teeth, exactly. Just a feeling we got.

The road and the heat had made us weary. After an AMAZING nap we headed over to Carlsbad Caverns for The Bat Flight, what Mx and I had lovingly dubbed The Bat Show. Visitors to the Caverns call each day to find out the time the flight & ranger talk will take place because the bats change their flight in relation to the sunset. Anyway, we were very excited because thousands of bats fly out of the cave and we were all over that. But, when we checked in, a nice lady behind the counter said they only had one bat the night before and hadn't seen bats in weeks, they thought in part due to the dry weather, and no bugs. Mx and I cracked up. So we waited. And waited. And there was this little boy giving his mother hell that was worth the wait even if we did get one bat. But, the bat gods smiled on us that night and thousands and thousands of bats left the cave that night. The Bat Show is up there in my all time TOP 10 WILDLIFE MOMENTS. LOVED IT. I didn't want to leave. They swirled out of the cave in a sort of bat hurricane and Margaux and I grabbed each other, cracking up. Got goosebumps the swarm was so beautiful and the way the moved together in groups to fly out over the remote hills in the distance. A flock of bats is called a cloud. Some clouds were big, some were small. But the ones most fascinating to watch were the large clouds because the bats flew in sync with each other, changing course together all to the staccato rhythm of the beat of their wings.



We fell asleep dreaming of the bats and the spelunking we'd do in the morning.

This leg of the road trip was short for one huge reason: We wanted to tour some plantations. And while we expected them to be grand, like the Monmouth [must take the house tour and the complimentary Southern Breakfast was fabulous], we didn't quite expect The Longwood Plantation. Even with all the movies I'd watched about The Civil War and all the school lessons I'd had [well, suffered through, wasn't a fan of history as a kid], the Longwood Plantation gave a rare insight into what happened to one family caught in the midst of war. Never finished, the Longwood stands as a reminder of people who had thought all their dreams were about to come true, and didn't. Our wonderful tour guide described the feeling I got while touring The Longwood like this, "You know when you wake up too early from a dream?" And, because my husband and I own a construction project management company, Elliott Management, I found this haunting example of east-meets-west architecture infinitely intriguing. The furniture was purchased, the exterior finished and the interior work had begun when the war broke out. Everything has been preserved as it was then, as much as possible. Even leaving buckets where the workers had dropped them the day they fled. The Pilgrimage Garden Club, who maintains the property and runs the wonderful tours, has one provision for their care of the property, that no one ever try to complete the construction.

When our tour guide discovered that Margaux was at school in New York City, the tour guide said, "I got a joke for you: A bunch of Yankee ladies were sitting around a fancy table eating chicken with their forks and knives and raised their eyebrows when the Southern women ate with their hands. Why do you Southern ladies eat with your hands? They asked, horrified. The Southern women said, 'Because you Yankees stole all our silver.'"

We didn't quite laugh. The southern ladies on tour with us just shook their heads. Being told that joke in the midst of the shell of The Longwood and, well, being Yankees, it was a little, um, awkward. But the guide was lovely and did a wonderful job of bringing the era to life for us.







Josephine, the cat

Stopped one more time for a look at the Mighty Mississipi:





For some bizarre reason we got all turned around in Natchez and even with GPS, we had a hard time getting on the road to New Orleans. Once there, hotel troubles ensued. All I wanted to do was stay in a room with a balcony in The French Quarter. I was told that's what I had reserved at The Saint Louis Hotel. But, even after confirming and calling and reconfirming that we had our balcony room, they didn't have one for us. And instead had a room, well, more like a cave with a view of a massive tarp covering their courtyard. Yuck. And, the weather, although it turned out to be FANTASTIC, was supposed to be very rainy that weekend. After inquiring about another room, which was worse, we went to stay at The Omni Royal Orleans, where I was told over the phone that they had a balcony room available. When we got there it wasn't. This was a little bit of a low point for me. While we did a have a beautiful view of a magnolia tree,



I was tired and disappointed. Mx went down to complain and the Concierge was from Brooklyn. He totally understood our saga. Gave us some drink tickets and gave us a room rate reduction. So, I let the whole balcony room thing go. But, next time, I will get my balcony room...if you want French Quarter charm with a balcony room in New Orleans I'd suggest these places: The Hotel Provincial, or The Chateau Hotel. Both of these hotels give you charm and a little bit of quiet to enjoy your stay in The Crescent City.

After I got over the balcony drama, we went for a walk down Bourbon St., which didn't disappoint.





Turns out we were there during The New Orleans Wine and Food Experience and want to go back next year for it too. Must go. Great wines and fabulous food.

Later on in the evening we went to Sing-Sing, where we enjoyed awesome blues music and people seemed to read our minds all night, but that's another story...



Had a little etouffee and plopped into bed, at our usual 2AM.

We started our tour of Nashville at The Pancake Pantry, and I had THE most amazing potato pancakes. We visited the Ryman Auditorium next, the original home of The Grand Ole Opry. We only had time to tour one thing in Nashville and picked the Ryman. The tour was fantastic.[If we had the time I would have LOVED to see a show there.]





One of the best descriptions of the Ryman came from a tour guide who said "people courted here." I loved that. But, as it was built as a tabernacle originally, people also worshiped here. Story goes that Thomas Green Ryman, a steamboat captain who profited from the gambling and drinking houses he owned in town, built it for a preacher named Sam P. Jones. Ryman went to heckle the preacher one night, but after hearing him preach in a tent, he decided to construct a space so that Sam would never have to preach in a tent again. $100,000 and 7 years later the Union Gospel Tabernacle was complete.

Hard to say goodbye to Nashville, felt like we could have stayed a while. We swung by Memphis on our way to Natchez. And Sun Studio was our first stop, a recording studio so legendary it gave me goosebumps. "Walk The Line" was recorded there on April 2, 1956:



Mx and I grabbed a quick snack. I ate my first Moon Pie here!





On for some BBQ:



which was SO good, we thought they had put crack in it...WOW. Hated to leave Memphis so soon! Our BBQ buzz lasted all the way to Natchez, and helped us get over the fact that we were about to run out of gas on The Natchez Trace. Isn't it amazing how sinister a place can look, late at night when the needle is one tick from empty? Note to self: gas up BEFORE the ride.

And arrived at the BEAUTIFUL Monmouth Plantation. Ahhhh..... You MUST go there. Must. Friendly staff, great food and the rooms are to die for...





What the canopy looked like above our pampered lil' heads...



Even though we got there at like 1 AM, I had to sit and write at this desk. WOW. As I wrote about our travels, I couldn't help but wonder how many other writers sat down at that desk. I wondered about their lives, their dreams and all the magic and heartache that correspondence can bring.

Susan J. Epstein, MS, MEd, is the Program Coordinator at the Jacobs Neurological Institute. In her new book The Life Program For MS: Lifestyle, Independence, Fitness, and Energy, she addresses the limitations imposed by Multiple Sclerosis which results in patients becoming sedentary, gaining excess weight and developing poor eating and exercise habits.  Epstein provides a user-friendly teaching tool that helps sufferers to incorporate new behaviors into their daily routines.  In the original article below Epstein looks at the role of vitamin D in MS.

A deficiency in vitamin D is currently one of the most studied environmental risk factors for MS and is potentially the most promising in terms of new clinical implications. In particular, this vitamin could alter the immune response taking a positive role in the central nervous system. There are two main types of risk factors for MS: genetic and environmental. In today’s world many genetic predispositions for various conditions have been discovered, and the various environmental triggers identified; making this an exciting time for learning specific ways to change behavior to improve or protect health.

The following environmental factors influence the risk of MS:
1. latitude
2. past exposure to sun
3. serum level of vitamin D

Worldwide, latitude has an undeniable effect on the prevalence of MS which occurs with much greater frequency in areas further away from the equator. Lower incidence of the disease is found in tropical regions where the high degree of sunlight is recognized as the correlate. Latitude has an overall influence on the amount of sunlight in a given region making geographical location advantageous. So if we know that the level of exposure to sunlight directly affects the level of vitamin D in our bodies and this vitamin is known as the “sunshine vitamin” where does that leave those of us who live in the northern hemisphere? Does this suggest people even without disease are deficient in vitamin D? Also, the western diet lacks this crucial vitamin providing less than 100 IU a day, falling far below the daily requirement of 2,000 IU/d. It is thought that vitamin D is most likely involved in a number of regulatory activities besides just bone health, and could have a dramatic effect on immune function. Such low average levels of vitamin D raise serious public health issues and there is an urgent need for national health institutes to take preventative measures. With this knowledge should come behavior change, not only for the MS patient but also the general population.

Clinically most MS patients have low levels of vitamin D in their blood and are in a state of deficiency compared to the international norm. A recent study found a direct link between the level of vitamin D circulating in the blood and the disease, without factoring in the effect of latitude or sun exposure. Further research trials are necessary before any firm recommendations can be made but in the meantime, physicians can no longer ignore that many MS patients have a lack of vitamin D, which could be detected through systematic blood tests. Vitamin D supplements are appropriate to restore their levels to within normal range. This should be considered a general medical recommendation simply to increase levels in the blood to the current recommended amount of at least 2,000 IU/d. This would mean taking between 1,000 and 3,000 IU of vitamin D3 (cholecalciferol) on average per day. There are two types of vitamin D: D2 and D3. Vitamin D3 is the healthy kind your body makes when exposed to sunshine. D2 is the synthetic form used in prescriptions and is considered inferior to D3.

Having this knowledge regarding the benefits of vitamin D as well as the current published research indicating the prevalence of vitamin D deficiency; behavioral strategies seem appropriate and can be very safe when discussed with your physician. Since moving to a tropical region is unlikely, the options available are:

safe sun exposure, vitamin supplementation, and a diet with foods rich in vitamin D.

Optimizing sun exposure is a topic in itself and comes with some risk along with conflicting opinions and recommendations from experts in the field though it seems reasonable to get a dose of fresh air and sunshine on days when the weather is in your favor. Some experts recommend exposing your body to sunlight for 15-minutes before applying sunscreen in order to get the benefits from the UV rays which naturally provide the vitamin D needed for good health. Luckily a vitamin D3 supplement can provide the same benefits when given in the appropriate dose to bring blood levels to within normal range.

Before purchasing a supplement you should have a blood test to determine your baseline levels of vitamin D. Your neurologist can then take the results and prescribe the amount of vitamin D3 to bring your levels up to within normal range. MS patients are seen regularly to monitor their disease status and can systematically have blood levels measured. You also may want to search for MS Centers that are running clinical trials to study the effects of Vitamin D on MS and inquire about being a subject.

Vitamin D3 supplements are available in both liquid and capsule form. They can be purchased at any pharmacy for as little as $4.49 for 100 capsules containing 1000.0 IU. Check the label to make sure the primary ingredient is Vitamin D (as cholecalciferol). As mentioned earlier the Western diet is commonly very low in vitamin D but there are good food choices to increase the amount in your diet. Excellent food sources include: oily fish like salmon, mackerel, and sardines; vitamin D-fortified milk and cereals; whole eggs, liver, and beef. A combination of the three available sources of vitamin D is optimal, and purely from a medical point of view, supplementation is unavoidable in order to improve the general health of the MS patient. And with clinical research trials underway all over the globe, supplementation may soon be proven to be neurologically beneficial.

This has been a wonderful two weeks. First my second grandson was born which is an amazing and joyful blessing. And, while my next two presents (I think of them that way) are insignificant in comparison, I do feel excited about them.

Yesterday, our local paper, The Queens Chronicle, published an article about our book, Day's End Lullaby, and us. The reporter/editor, Ms. Landor, liked the book so much she wanted to help us promote it. Today, I got my copy of the paper. I was so surprised when I saw the article took up more than half the page. I'm writing this with a smile on my face.

It gets better though. A couple of weeks ago I submitted Day's End Lullaby to Stories for Children Magazine for review. Today I received and email with the review. It received a 5 star review!

I've mentioned before that life is so interesting and funny. For the past year or so I've been wondering what my life would have been like if I didn't have MS. Would I have gotten my MBA or become a CPA? Would my personality be different, would I be thinner? :) Who would I be now at 55-years-old. I guess I'll never know. But, I do know having to give up my career led me onto a new path that opened up new opportunities and blessings.

Karen

It certainly is funny, the twists and turns of life; the paths you choose and the ones you don’t. Sometimes, life puts a road block on the path you chose and then you have to navigate a different road…without the help of a GPS system.

Growing up I was always drawn to writing and drawing, but upon graduating high school never thought of it as a career. Instead, I choose bookkeeping. At the time, the early 1970s, a lot of seventeen and eighteen-year-old girls didn’t even think of college. The Leave It to Beaver era still had a hold on our society; girls got married and raised a family. Without a second thought, this was the next path I chose. This path had its ups and downs until the mid-eighties. The divorce rate was up and so was my marriage. This was my first road block.

With two very young children, I did housecleaning and care giving until my youngest child started kindergarten. Out of necessity, this was my third path chosen. Then, I was fortunate to find a bookkeeping job with flexible hours; I was able to bring my children to school and pick them up. It was at this job that I first thought of going to college to become an accountant. My boss, who was younger than I was, put the idea in my head. He urged and even encouraged me to go for it. I regret to this day that I never really thanked him for his support. It took ten years, but I finally received my bachelor degree and I became assistant controller for a manufacturing company.

I had every intention of continuing my education toward an MBA, but life with its twists and turns had other ideas. I was diagnosed with Multiple Sclerosis and had to stop working. This was my second major road block. The first few years I wasn’t able to even contemplate doing something else. But, then, by the grace of God, I found the most extraordinary acupuncturist and herbalist. Now, while I still have many limitations, I am able to devote time to writing.

Life is so amazing. If I didn’t have to support myself and my children I am sure I would never have gone to college. There are so many roads, some you take willing and others are forced upon you, one road leading to another and some roads leading nowhere. I am so grateful I found a road leading here. I seem to have come full circle.

Karen