msf_staff: (Kasey)
This week (October 4-10) is Mental Illness Awareness Week in the U.S. Coincidentally, we are just putting to bed the latest issue of MSFocus (due in mailboxes later this month), the theme of which is on mental health for people with MS. Why is this an issue?

First of all, because having MS does not exclude you from having any other illness, including mental illness. According to the National Institute of Mental Health, an estimated 26.2 percent of Americans ages 18 and older — about one in four adults — suffer from a diagnosable mental disorder in any given year. They estimate that only 6 percent of those are "serious" mental illnesses, but if you are the one experiencing it, it's "serious." to you.

Moreover, some researchers believe there may be a connection between MS and bipolar disorder, as it appears that bipolar disorder is unusually common among those with MS. This connection isn't proven, but the increased prevalence has been noted.

Then, of course, there's the issue of depression. Depression is an illness that's intimately married with MS. Whether it's pre-existing before a diagnosis of MS, an MS symptom caused by the disease process itself, a side effect of MS medications, or an emotional and physiological response to the stress of dealing with a chronic illness, the fact is that the majority of people with MS will experience depression at some point. It needs to be taken seriously, and it needs to be treated.

This is an area where we cannot afford stigma. Depression can create or aggravate pain, fatigue, cognitive impairment, and a host of other MS-related symptoms. In that light, while it may not be advancing the disease process, you could certainly say that depression makes MS "worse."

Don't allow that to happen to you or someone you know with MS. Treat depression as what it is: a common part of MS that has to be faced. Address it head-on and get treatment. There's help available, if only you make the choice to seek it!
msf_staff: (Kasey)
In a teleconference she did for us way back when, our resident expert on managing cognition problems said that when technological or physical reminders fail you, you have to depend on "human reminder services," i.e. someone who will tell you when you've forgotten something important. Since I often forget to charge my pda or read notes that I leave myself, I rely on human reminder services quite a bit. In fact, most people on our staff know they have blanket permission to nag if they think I'm forgetting something.

This morning, however, my human reminder service was a police officer.

I was returning home after driving my youngest son to school (in my pajamas, of course, because that's when something like this is bound to happen), and a police officer instructed me to pull over. The conversation went like this:

Officer: Good morning, ma'am.
Me: Good morning. What seems to be the trouble, sir?
Officer: Are you aware you're driving on an expired tag?
Me: What?!? No I'm not!
Officer: Yes, ma'am. According to the computer you are.
Me: That's not right. I went down to the tag office myself a few weeks ago.
Officer: Can I see your new registration then, please?
Me: Sure, it's right here in the.... Oh. Oh, no!

You see, I remembered clearly visiting the tag office. I remembered clearly removing the sticker from the new registration and affixing it to the tag. What I did not remember was that the tag I affixed it to was attached to my husband's vehicle, not mine. I was recalling having renewed his tags in July, not mine in August as I thought.

I explained to the officer what had happened (without mentioning that I have mild cognitive dysfunction) and he said, "These kind of oversights happen." But was it an oversight? Or was it a function of my fibro-fog? (That's what we fibromyalgia people call our cognitive symptoms.) There's the conundrum. We never really know, do we? That's what makes it so irritating when 'normal' people say, "Oh, I forget things like that all the time!"

Frustrating as it is, I have to accept that I will never have an answer to that question. So I simply have to adapt. Cognitive symptom or oversight, I just need to make sure it doesn't happen again.

So I really don't mind the $10 ticket. If I hadn't been stopped, I never would've known my memory was playing tricks on me. And it gave me a reason to think about the way my husband and I divide these sorts of responsibilities and that perhaps it's time for me to turn over the more time-sensitive tasks to him. If I have a choice between my husband or a police officer for a human reminder service, I'll choose husband, thanks!

The MSF has some terrific info on coping with cognitive symptoms -- our own booklet, and several books in our free Lending Library. Check out our website to learn more. And our partners at the MS Technology Collaborative have launched cognition-building games at http://www.mymsmyway.com.

Meanwhile, you can make me feel better! Care to share a crazy cognition story of your own? (Remember, you can comment anonymously if you want or use openID to sign in from your own blog if you're not a member here.) Please, let me hear 'em!
msf_staff: (Kasey)
Today is World MS Day. Much like any holiday or observance, I'm guessing it means different things to different people. To some of us, maybe it's a day to think about our own circumstances - how MS has affected our lives, and what we can do to improve or change that. To others, like those of us who work with MS in an organizational setting, maybe it's a day to think about the global impact of the disease. But one thing I'm sure of is that to most people on the globe, it's just another day.

There's the rub. Those are the people we need to reach.

Recently, I polled my friends and family and gave them a multiple choice question: "Kasey works for..." About half of them chose muscular dystrophy rather than multiple sclerosis. (Have I mentioned that I've worked for the MSF for more than fifteen years?) It's certainly not that I don't talk about my work - believe me, I do. It's that the terms "MS" and "multiple sclerosis" don't form a clear picture in their minds.

When I say "diabetes" what comes to mind? Do you think about blood sugar, insulin, needles? If I say "high blood pressure" perhaps you think about diet, exercise, or salt intake. You understand what those illnesses are and how they're treated. The average person cannot say the same about MS. MS is just another disease acronym, just more alphabet soup.

That's why today is important. It's up to us to teach people what those letters mean. So today, while I hope you will think about the global impact of MS or how MS has affected you personally, I also hope you'll tell others about MS -- people who aren't affected by it, people who've perhaps never heard of it. Let them know what those two letters mean to the hundreds of thousands of people observing World MS Day today.

P.S. Don't forget about tonight's MS Town Hall. Please join in and tell us what you think are the unmet needs in the MS community!
msf_staff: (Kasey)
Someone emailed me earlier this week about this article, reporting on a small study using stem cells from MS patients' own fat. The study was too small (only three participants) to draw a lot of conclusions, but it does raise some interesting questions.

First off, who knew there were stem cells in fat? That's entirely new to me. And of course, it raises the question of whether those of us with abundant stores can donate to those poor skinny few.

Well, I'm kidding about that last part. Sort of.

We all know what a controversial issue stem cells have been because of the debate over embryonic stem cells. Some promising research has been done with adult stem cells, but the article seems to imply that deriving adult stem cells from fat is a simpler process.

Won't it be wonderful if this turns out to be an effective treatment? Although, you have to love the irony - the anecdotal evidence suggesting that diet plays a factor in the development of MS includes the fact that MS rates increase when a country's diet becomes Westernized. It would be just too rich if our lovehandles turned out to be the key to wellness.
msf_staff: (Kasey)
Check this out: Blogging Against Disablism Day 2009

I love these kinds of grassroots initiatives, so much so that I am:

(a) posting twice in one day, which I think is a first
(b) taking a slight liberty with the MSF blog and going to post something of a bit more personal nature, but firmly on topic and that I hope you'll appreciate.

Kasey's Guide to Offering a Disabled Person Assistance Without Being Irritating )
msf_staff: (Kasey)
This article ran in today's issue of MSFYi, and I had to share it with you:




MSF Joins Forces with MS Technology Collaborative

For nearly a decade, MSF has helped to connect the MS community to assistive technologies (AT) through our Assistive Technology Program. We are pleased to announce that MSF has taken that commitment one step further by becoming an Affiliate Partner of the MS Technology Collaborative, a joint-effort between Microsoft, the National MS Society and Bayer HealthCare Pharmaceuticals. Created in 2007, the Collaborative is dedicated to helping people living with MS overcome cognitive, vision, and dexterity challenges through the use of AT.

The Collaborative’s home is www.MyMSMyWay.com, a comprehensive online resource built for the MS community by the MS community. With the guidance of a steering committee of nine people living with MS, MyMSMyWay.com has become a one-stop-shop for AT information and resources. Here, visitors can use the “Snapshot” tool, a short quiz that provides customized technology solutions based on each individual’s specific needs.

MyMSMyWay.com also offers user-submitted technology tips, a monthly column on how to incorporate AT into your daily life, and an abundance of information about specific types of AT that are available, including options that are affordable and at times even free.

As an Affiliate Partner, MSF will work closely with the Collaborative, contributing content to MyMSMyWay.com and Helping to promote the Collaborative’s efforts to the MS community.

One such project that we’re particularly excited about is the development of an online game designed specifically to address the cognitive challenges of people living with MS. Expected to launch in June 2009, this game is being developed in consultation with leading healthcare professionals as well as several members of the MS community.

In the coming months, the Collaborative will look to the MyMSMyWay community to test the initial version of the game. Click here to register with MyMSMyWay.com and be one of the first to play this landmark game and provide your feedback.

We look forward to our ongoing partnership with the Collaborative, which we’re certain will help us continue to bring critical information and resources to the MSF community.




Some personal perspective: I imagine I'm preaching to the choir here on LJ, but I believe that computer technology is an essential of modern life. Today, access to the digital world is as critical to most people's daily activities as the access to public buildings and services guaranteed under the ADA. The difference is that a curb cut is always a curb cut; technology changes, progesses, and evolves, just as the condition of people with MS can change and evolve. For these reasons, your needs in terms of access to technology may not be the same tomorrow as they are today.

That's what makes a resource like MyMSMyWay.com so valuable. It not only provides a comprehensive picture of what's currently available in assistive technology, but it provides the ability to assess your current, real-time needs and find the right tool for the job.

I am absolutely thrilled to be working alongside the Collaborative. And a cognition video game just for folks with MS! How cool is that???
msf_staff: (Anne Marie)
Sometimes, being empowered means doing something you never thought you'd be able to do. For some people, that might mean traveling across the country and taking a cruise. For others, it might be a physical challenge, like snorkeling or walking through the ruins of an ancient city. For some of our cruisers today, it meant holding a snake in the St. Maarten Zoo! Who knew that would be required?

Thursday was our visit to the last island on our trip, St. Maarten, which is a territory of the Netherlands on one side and France on the other. Both sides are lovely, filled with shopping and adventure. As with Wednesday, we had beautiful weather, clear and breezy. The trip to the zoo took about 30 of our group, most in wheelchairs or scooters, to explore the Dutch side of the island, starting with the local birds and animals.

After visiting with talking parrots, colored ibis, and some very cheeky monkeys who liked to throw sand from their enclosure, part of the group headed back to the ship, while others continued to explore the island. In the afternoon, we gathered again for trivia featuring some of our alumni cruisers, MSF staff, and speakers. Who broke their hand while punching out a fifth-grade classmate? We won't tell, but here is one hint: it was a lovely young lady!

Alumni cruiser Melanie Lorenz said she got in a lot of shopping at this port, but she made time to come to the quiz show too, where her veteran cruiser status came in very handy as she guessed clue after clue about her friends from past trips. "Every year, I enjoy this," she said. "There are some people here who I only get to see once a year.”

Tonight is our last formal night, giving everyone a chance to dress up. Tomorrow, our speakers begin again, covering MS symptoms such as cognition difficulties and speaking problems. Stay tuned!
msf_staff: (Anne Marie)
Just in case you were starting to think the Cruise for a Cause was only about education, check out what we did today.

Our Wednesday started with a breathtaking view. Overnight, the ship arrived in St. Thomas in the U.S. Virgin Islands. Even those who didn't get off the ship were wowed by the striking contrast of towering green hills and turquoise sea, dotted even in the early morning with white sailboats.

After breakfast, it was off to the fitness center for a morning workout with personal trainer Jeff Segal. This has been one of the cruise's most popular events each day.

Everyone knows about the importance of exercise, but for people with MS, there is no other choice. No matter what your level of ability -- from wheelchair bound to entirely mobile --
movement helps keep the muscles you need strong. Starting with a demonstration with an exercise ball, sometimes called a Swiss Ball, Jeff showed the group how even sitting on an unstable surface can help you improve your balance and gain strength. Taking volunteers from the crowd, Jeff showed even those who were unsure that they could sit on the ball, at first with Jeff holding their shoulders, and then unassisted!

Resistance and floor exercises, as well as those that can be done with a caretaker, were also covered.

Limbered up for the day, many of our cruisers hit the port for a spot of sun and some shopping. Others took a shore excursion to the peaks of St. Thomas for an unparalleled view. Those who stayed on the ship enjoyed the sunny day and took a dip in the pool.

The more adventurous among us met on Deck 3 for a spot of karaoke before dinner. Led, as always, by the MSF's own musical talent, Derrick Lee, the group belted through the classics, many of which had a special meaning. From "I've Got You Babe" to the MSF round of "We are Family" the music underscored what this trip is all about. Even after the cruise is over and everyone is back on shore, the friendships and support systems built today last all year long!

Tonight, we will be at sea again and meet for a support group meeting at sea. Tomorrow, we will wake up in St. Maarten with a whole new day of exploration ahead.
msf_staff: (Kasey)
I just got an email that our RSS feed (which you can find here on LJ as [livejournal.com profile] msfocus)was added to Alltop's MS page. Alltop is apparently a service that aggregates RSS feeds by topic - they call it an online "magazine rack." I was really impressed with how the information was organized. It's nice to have all the newest MS headlines at your fingertips. How cool is that?

Also, did everyone see the segment with David Osmond on American Idol last night? (I remember when Alan Osmond was diagnosed, but I didn't realize his son had MS as well.) I just love it when MS gets national media attention! The more people learn about the disease, the more support there is for the cause. While he's probably not one of the contestants I'll personally root for (I have very strong Idol opinions, you see), I do wish him the best in the competition and hope he continues to speak out for people with MS.
msf_staff: (Anne Marie)
Remember a few years ago when America Online was in the hot seat for releasing tons of data about the things people researched on the Internet? In what seemed like a matter of minutes, some web savants had tracked down individual, real people just by doing some quick logic based on the websites they visited. If such a thing ever happens to Google, the nosy folks who look through my searches are going to get an eyeful: sexual dysfunction, incontinence studies, depression – you name it. That’s because in order to keep the people who read our website, newsletter, magazines and publications well-informed, I need to be somewhat of an MS expert. If I don’t already know something about MS and its symptoms, I better know where to read up on the topic.

Part of this is in my blood. Before I started work at the Foundation, I was a reporter. I always enjoyed writing and interviewing people but I relished the research that came first; before I could explain something to the paper’s readers, I had to understand it myself. That wasn’t always a simple task. But as hard as it was to grasp Tax Increment Financing or to ferret out the details in a $1 billion school board budget, I sometimes find it even more frustrating to try and nail down the specifics of MS.

I like to deal in facts. With MS, few things are certain. Even the doctors who answer questions about MS on our online forum and in our magazine use what I like to call the “squishy” words: “usually,” “should,” “could,” “may” and “might.” We all want to give you a straight answer about your diagnosis and the symptoms you experience but in many cases the truth isn’t there, no matter how hard we look. As challenging as this is for me to accept, I know it must be more difficult for you.

As we prepare the Winter issue of the magazine, I recently read and reviewed a guide to healthy eating that was co-developed through the Harvard School of Public Health. In it, author Dr. Walter C. Willett talks about the crush of “breaking news” and “groundbreaking research” that seems to come out each day about what we eat and how it impacts our health. He points out that any one of those studies doesn’t present the answer to, say, what role cholesterol plays in our body, or if soy decreases or increases a woman’s chance of getting breast cancer. Instead, each piece of individual research is “like dropping stones onto an old-fashioned scale,” he writes. “The weight of evidence gradually tips the balance in favor of one idea or another.”

The same is true with MS. I hope that even though you might not always know for certain the wheres and whys, that you will all continue to add to the discussion and to look for answers. The more information that is gathered about MS and the ways it impacts the human body, the closer we will all be to replacing those “coulds” and “shoulds” with the facts.
msf_staff: (Kasey)
I've been working on the MSF's publications - first as a proofreader, then as a writer and editor - for nearly twelve years. (There was also my short stint as a graphic artist, but we try to forget about that! I'm extremely grateful for Terry Schenker, the graphic artist we've had for the last six years, who has given our publications such a distinctive look.) I was named Editor of the re-launched MSFocus magazine in 1999 and have served on the editorial committee in one capacity or another since that time.

The interesting thing about that (to me, anyway, and I hope you'll find it interesting too) is that in 1999, I was the MSF's Director of Information Technology. How does an IT geek become the head of the publishing staff? As I said in Part One, "In a small nonprofit organization, the staff tend to wear many hats." I was here, I had the skill and the interest, so the administration let me hold the reins. It was just a new line added to my job description.

That mindset, of making use of the assets you have on hand, continues at the MSF today, which is the reason I'm also the sound technician who records the audio verion of MSFocus and one of the voices you'll hear on the CD each issue.

When Chris Ratliff (who had taken over for me as Editor, but recently relocated) decided we should provide an audio version of the magazine for people with visual impairment or motor control challenges, she contacted the director of a local broadcasting school, a terrific guy named Chris Hudspeth. He and his student volunteers began recording the magazine. But when Chris Hudspeth decided to relocate, the future of the project seemed to be in doubt. We could've hired an expensive recording studio, but why not use the assets we had on hand? Chris H. helped me locate the equipment we'd need and trained me to record and edit the sound files. Those IT geek skills I mentioned came in handy. Thanks to his help - and staff members from every department who take time out of their busy schedules to read the articles - we continue to offer an audio version of the magazine at virtually no expense to the MSF. That's more money we can direct to other services to benefit people with MS.

So that was my point about thinking like a small organization. And thanks to that thinking, MSFocus is now available in print, on audio CD, and online.

BTW, subscriptions to the print and audio version are available free of charge to people with MS and their family members residing in the U.S. For anyone outside the U.S., trust me, the online version is pretty awesome. You can even see the newest issue before it hits mailboxes later this week.
msf_staff: (Kasey)
I logged on today with a plan: I was going to write about our magazine, MSFocus. But as I started to commit my thoughts to words, I realized what I had to say might not make sense without some context.

Part of what I was going to say was "In a small nonprofit organization, the staff tend to wear many hats." But I realized that might give the wrong impression. Is the MSF a small organization? Can any organization that serves a large population across the entire United States truly be called 'small'? No. I think we're a pretty big organization in terms of the impact we make.

But in a physical sense, we're a small organization. Though we deliver services in all 50 states and provide information to people and organizations around the globe, we accomplish all of that from a cozy, two-story office building on the north end of Fort Lauderdale, and an office suite about a mile down the road where we moved our campaign center and shipping staff when we decided to expand our Outreach staff.

My point is, no, we don't have branch offices in every major city, but that just keeps our overhead down. It doesn't stop us from helping people in Peoria or Santa Fe or Juneau. At the same time, it keeps us thinking like a small organization. It keeps us focused on accomplishing the most with the least expense, and fully using the resources we already have.

And that's why we all wear so many hats. It's not at all surprising around here for a person to have tasks or be assigned to committees that are unrelated to their job description, or to have the whole staff pitching in to help out one department during a busy time. Tonight, for example, staff from three or four different departments will be at a bachelor/ette auction pitching in to help our Special Events staff and their volunteers. During MS Awareness Month, the Special Events staff will repay the favor by helping out during educational programs.

How does all of this relate to MSFocus? Well, that's mostly about my hats. Tune in next time. ;-)
msf_staff: (Kasey)
As the administrator of the MSF forums, I've heard a lot of 'bad doctor' horror stories over the years. People get frustrated with the way they're treated, but often feel like they don't have a choice or feel like it's the same everywhere. But (for most of us, anyway) there is a choice, and we at the MSF always urge people to keep looking until they find a doctor they're comfortable with and trust.

Half a dozen of us at the MSF were lucky enough to have one of those doctors - the kind who make you comfortable and inspire trust - but that doctor passed away this week. These are the things we loved about him, and the things we'll be looking for in a new healthcare provider.

The makings of a great doctor: a list )

These are the things I hope each of you will find when choosing a doctor, and I hope you won't settle for less. I know I won't - I've been spoiled.
msf_staff: (Anne Marie)
If I were so inclined, I could easily spend eight hours, five days a week (basically my entire time at the MSF!) reading about MS. Even if I managed to get through all the books, websites and medical articles that publish daily, there would still be hundreds of blogs and personal websites to catch up on.

I start each morning in the communications department checking medical websites and journals for the latest news about MS. If that is the meat of my day, reading the MS-related blogs and creative postings all around the Internet is the dessert. I save my favorite ones for the very last, enjoying their wit, wisdom and way with words in the hopes that some of it will carry over into my own day’s writing.

Because the biggest part of my job is editing articles for MSFocus, the Foundation’s quarterly magazine, sometimes I’m lucky enough to find the most moving writing about MS right in my inbox. Since I started working at the MSF this spring, I’ve discovered how many artists, writers and particularly poets there are among you.

Where it often takes me hundreds of words to describe how I am feeling, so many talented people are able to get the complex emotions associated with MS across in just a few spare lines of verse. That’s one reason why we created the new Voices forum on the MSF website. We wanted to create a safe space for people to share their work and talk about what inspired them. And, it’s not just for poetry -- other writers, artists and photographers are welcome, too.

Here is one of my favorite recent posts, called “Attitude” by Stephen Knapp. Read more... )
msf_staff: (Kasey)
As you may know, each year the MSF hosts National MS Education and Awareness Month (TM) in March. Around here, we informally call the planning committee "the March Awareness committee." This drives our executive directors crazy, because as they've pointed out - correctly and repeatedly - we are not raising awareness of the month of March. We are raising awareness of MS. But then again, we try to do that every day. March is special. :-)

Two weeks ago, the planning committee had its first meeting for National MS Education and Awareness Month in March 2009. The purpose of the first meeting is always to develop a theme - a brainstorming process fraught with a lot of awkward silences, silly outbursts, laughing, and repeating of the same thing five different ways, but the end result always happily surprises us all. Somehow, we always seem to come up with a strong message, succinctly expressed.

This year's theme is (::drumroll::) MS: Now You See It, Now You Don't.

Stop and think about it for a minute. It'll hit you.

It did, right? You got it? I think anyone with MS, or who has a loved one with MS, relates to that sense of unpredictability. Symptoms that come and go, or were just invisible to begin with, are part of what makes living with MS so tough. We'll have new publications dealing with those symptoms, and some other theme-related activities in store. Tune in here for details as the time draws closer.

LJ Housekeeping note: To those of you who've friended this journal, hi! I just wanted you to know that we haven't friended you back because we've decided not to friend any journals without explicit permission. If you'd like us to, drop a comment please!
msf_staff: (Kasey)
We're in the middle of the application cycle for one of my favorite programs - the Brighter Tomorrow Grant. The purpose of this grant is to provide funding for things that aren't normally covered by our other programs. But it's not just meant for needs, the beauty of it is that you can ask for wishes, too. The name says it all: through this grant, you can ask for whatever will make your tomorrow brighter.

What that is - what makes tomorrow a better day for you - is different for every person. We've seen requests for everything from riding lawn mowers to a trip to be on The Price is Right; from new drapes to a new blow-torch for an Alaskan sculptor.

Can a lawn mower change a life? You bet. Absolutely. For a person who has lost the ability to take care of this basic chore using a conventional lawn mower, a riding lawn mower gives them their independence back. It's one less thing that MS can take from them.

And some people use their wishes on behalf of others. I'll never forget the artist with MS who asked for supplies to help her give pottery classes to terminally ill children. Her story had the entire grant committee in tears.

And that's what I love about the program - each story is unique, each grant is special. It's a joy to be involved with.

If you're interested in learning more or applying for a grant, visit http://www.msfocus.org/programs_grants_bwmg.php. (Unfortunately for any international folks, you do have to be a U.S. resident.)

And to help you out, here are some inside tips about your application: 3 tips )
msf_staff: (Kasey)
If you read our magazine, MSFocus*, you know we regularly feature a column called MSF on the Road. In this column, we briefly highlight some of the recent educational programs we've hosted or participated in. What we don't get the chance to do is tell you what it's like to do these patient programs. Here's my perspective.

Greensboro, for example )



* If you don't read MSFocus, why not? It's a free subscription! Or you can save a tree and read it online, or even receive an audio version on CD!