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)
Six Questions with...
Six Questions with Tim Carr, retired TV reporter


1. How has MS changed your life?

MS has made me a more compassionate and self aware person, one who is concerned about others particularly those who may be enduring a life altering illness.

2. What is the most important thing you’ve learned since your diagnosis?

I’ve learned that doctors and other medical experts don’t know everything and are quite often proven wrong when it is time to deal with a sickness. I’ve also learned that while not everybody that lives with MS has the same experiences, you can’t let that cause anxiety and worries in your life.

3. How have you found support?

First of all, I have my wife. She is my caregiver and conscience. I also have many friends and associates who are keeping a good eye on me. I’ve also found support from the various MS agencies and my treatment providers. I get a lot of support from my MS peer support group. My church congregation is a major supporter.

4. What is the best coping tip you’ve picked up?

I’ve come to realize that what ever the situation, it won’t last forever so you should not let it consume you or your life.

5. What is your favorite MS- or health-related website?

I go to MSFocus and the national and local MS Society websites.

6. This is the bonus question! What question would you like to ask our readers?

What does a person with MS look like?

Your answer?

Everybody else.

Really I think that sums it up, Tim! What do you think, readers?


P.S. to people who came over from other sites: You can still join the discussion! Our blog supports openID (meaning if you have a blog on another site, you can probably use that to sign in as an openID commenter) or you can comment anonymously.
msf_staff: (Kasey)
Six Questions with...
Six Questions with Stuart Schlossman of Stu's Views and MS News (an MS advocate, blogger, source for MS information and MS peer).


1. How has MS changed your life?

Hmm, tough question!! Well, I want to think that it's made me a better person. When not having a disability, we tend to see the world differently.

I was diagnosed with multiple sclerosis in 1998. After the usual few months of "why me?" I decided I was "chosen" to acquire this illness and with the use of my "big mouth," I could help to lead others... I want to leave my mark upon the world, letting others know that there are those who fend for them.

So, in answer to the question, how has MS changed my life? It has made me a more caring and attentive person -- towards most people. MS caused me to change from being obnoxious and abrasive to now being obnoxious and abrasive  and a "humanitarian.”

2. What is the most important thing you’ve learned since your diagnosis?

That much good often comes from bad things... There is always an equaling offset. All the good people that I may not have met, had I not been "chosen" and all the good that I have been able to give of myself, for those needing what I provide. Read more... )
msf_staff: (Kasey)
Six Questions with...
Six Questions with: William L. “Bill” Brayer - Founder of MS Helping Hands


1. How has MS changed your life?

From having my own business and being very active to adjusting as to what I can do and forget what I can’t. The best thing I did was to become an MS volunteer and founded MS Helping Hands-MSHH & the MSHH Donor Closet as both provide services & resources that are not provided by NMSS and other local social services agencies.

2. What is the most important thing you’ve learned since your diagnosis?

How serious MS really is and that there are NO two people with MS alike. The general public still doesn’t have full knowledge of the disease and what the people and families of those with MS have to go through and how their lives have and will change.

3. How have you found support?

From the Sno-King support group that I have co-facilitated for over 20 years and from the MSF. My wife, family, church and friends have been very understanding of my symptoms and what I am no longer able to do.

4. What is the best coping tip you’ve picked up?

Live each day as if it were the first day of your life and enjoy it to it’s fullest. You may have MS, but MS doesn’t have you.

5. What is your favorite MS- or health-related website?

I actually cruise the Internet to learn all I can from many sites.

6. This is the bonus question! What question would you like to ask our readers?

What would you do if the shoe was on the other foot?

Your answer?

I hope that I would never turn away from someone I love or care about because she or he had a disability.

Really good question, Bill! What do you think, readers?


P.S. to people who came over from other sites: You can still join the discussion! Our blog supports openID (meaning if you have a blog on another site, you can probably use that to sign in as an openID commenter) or you can comment anonymously.
msf_staff: (Default)
Six Questions with...
Six Questions with: Jude M. Hubber, Director of Customer Relations with the largest relay race in the world and a lover of life.


1. How has MS changed your life?

MS has changed my life in many ways. Most importantly it has taught me to reprioritize and realize I have strengths I might never have used before. I now let certain limitations open up doors I once never dreamed.

2. What is the most important thing you’ve learned since your diagnosis?

To be positive every day, and never let a bad moment carry to the next day.

3. How have you found support?

My family. Not everyone is as lucky as me. That is why I believe the MSF is such a great group. Being open is a great way to find support. If you have a question, just ask.

4. What is the best coping tip you’ve picked up?

Laughter. Don’t take things so seriously. Nothing in life is worth not laughing about. If you can’t laugh, smile. We teach children how important smiling is, but somewhere along the line we forget to teach ourselves the same thing.

5. What is your favorite MS- or health-related website?

Msfocus.org and espn.com.

6. This is the bonus question! What question would you like to ask our readers?

Do you hide that you have MS from anyone and why?

Your answer?

No! If I am afraid of being fired because I have MS, then I don’t want that job anyway. People need to be smart about making sure they are employed, but don’t lead a separate life just to feel more stable. The stability is nothing without honesty.

Jude is definitely open about his MS, as you can see in his MSF Ambassador video. It's an interesting question for our readers: Have you hidden your MS? How do you feel about it?


P.S. to people who came over from other sites: You can still join the discussion! Our blog supports openID (meaning if you have a blog on another site, you can probably use that to sign in as an openID commenter) or you can comment anonymously.
msf_staff: (Kasey)
Six Questions with...
Erika Bolin, Producer and Writer


1. How has MS changed your life?

How hasn’t it? I have slowed down and have taken a look at what has to be, what I want to be, and what is. I made some changes – all for the best – and I am now thriving again.

2. What is the most important thing you’ve learned since your diagnosis?

I must speak up for myself and learn to be my own advocate. But equally important, I also learned to ask for and accept help.

3. How have you found support?

Luckily I love to do research. I found the Multiple Sclerosis Foundation (among others). Through the foundation I discovered a reading library, a grant program, and a device program. I have been overwhelmed with the help they’ve given me I have come to realize I am not alone – even if my family is three states away.

4. What is the best coping tip you’ve picked up?

I am a huge dog lover. I read or heard somewhere live with MS fatigue properly you should think like a dog. Play then nap. Play then nap. And I would add, eat a well balance meal for your breed (LOL), drink plenty of water and not too many treats!

5. What is your favorite MS- or health-related website?

I have no one MS portal I go to. My favorite site is Pogo.com. It is a free game site I use medicinally (LOL). I believe in keeping my brain active. With all the choices, I can play as my mind is able. Just pop balloons or a game of team cards! My brain keeps firing up and on.

6. This is the bonus question! What question would you like to ask our readers?

What’s your biggest fear about being diagnosed with MS?

Your answer?

Many think their lives are over when first hearing they have Multiple Sclerosis. This is not a death sentence and progression is different for all. By becoming adaptable and flexible you can still have a great life! You can’t change the diagnosis, but you can also make sure it doesn’t change you: the inner you. Grieve, get mad, get sad, then meet back up and notice the sunset is still really beautiful – even if you now need help to get out and see it.

Let's hear your answers now - What's your biggest fear?


P.S. to people who came over from other sites: You can still join the discussion! Our blog supports openID (meaning if you have a blog on another site, you can probably use that to sign in as an openID commenter) or you can comment anonymously.
msf_staff: (Kasey)
When I recently polled our readers about what you'd like to see in this blog (and thanks to those of you who responded), some of the options were "Interviews with interesting people with MS", "Links to other sites of interest to people with MS", and "Discussion topics." Well, I realized I can do several of those things at once! Why not just ask the interesting people with MS what sites they like to use, and what topics they would like to discuss?

So I give you now a new feature of this blog: Six Questions with...

While I'll probably end up doing interviews once or twice a month, I decided to kick things off in style. From now until World MS Day (one week left!), we will have an interview a day! Starting with:

Six Questions with...
DAVID LYONS; TV/Film Executive Producer and founder of The MS Bodybuilding Challenge


1. How has MS changed your life?

I have always been a driven and motivated person. But having MS has made me realize that there is nothing that can stop me from my goals and it has motivated me even more to accomplish what others say is impossible.

2. What is the most important thing you’ve learned since your diagnosis?

I’ve learned that the world does not revolve around what I want just because I have MS, that I cannot pity myself for having the disease and that I need to make a difference so that people will pay attention to the MS cause.

3. How have you found support?

Through The MS Bodybuilding Challenge, which is my odds defying battle to compete in a National Physique Committee bodybuilding contest, I have found support from all over the world. What better way to get people to rally behind you then to do something that no one has ever done before?

4. What is the best coping tip you’ve picked up?

Never dwell on the disease. Focus on your goals and accomplishments and you won’t have time to cry over MS. Who’s listening anyway?!

5. What is your favorite MS- or health-related website?

I have to say my own site http://www.themsbodybuildingchallenge.com. I hear from people all over the world that what I am doing is an inspiration not only to MS patients but to healthy people. I didn’t get MS to inspire the world but now it is a by-product. How neat is that? Become a supporter.

6. This is the bonus question! What question would you like to ask our readers?

If you could do one thing to inspire people and bring awareness to the MS cause, what would it be?

Your answer?

I’m already doing it and it’s called The MS Bodybuilding Challenge!

Okay, readers! Let's discuss David's question. What one thing would you do?

P.S. to people who came over from other sites: You can still join the discussion! Our blog supports openID (meaning if you have a blog on another site, you can probably use that to sign in as an openID commenter) or you can comment anonymously.
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)
The teleconference for World MS Day is really coming together. I'm excited about it. (Which I'm sure you're not surprised about, because I generally only post when stuff gets me excited!)

The format of the teleconference will be an MS Town Hall meeting. We will have panelists, but we hope it will be highly participatory for the audience. The topic will be "Unmet Needs in the MS Community." Each of our panelists will take 2-3 minutes to discuss what those needs are from their perspective, then will open it up to the audience for discussion or questions.

The panelists? So far, I've confirmed the following:Click, because these are awesome! )

If you want to participate, call in directly at (888) 550-5602 and enter 2344 1168. (Again, that's May 27 at 8 p.m. Eastern.) You can also register to get a meeting reminder by phone or by email by emailing editor@msfocus.org or by calling (800) 225-6495, ext. 145.

Hope to talk to all of you then!

Intro

May. 1st, 2009 11:00 am
msf_staff: (staff)
Hello, Dreamers!

This is the journal of the staff of the Multiple Sclerosis Foundation. Why is the MSF starting a Dreamwidth account for their staff?

Well, mainly because you're here - people with MS talking about MS. We need to know what you've got to say, so that we can better serve your needs. Of course, we'd also like to tell you what we're up to. We have some pretty terrific services, all offered free of charge, and we'd like to make sure you know about them and can take advantage of them. So getting in touch should be good for us all.

For future posts, this account will mirror our livejournal, so there's no need to friend both. (But far be it from us to stop you!)

If you have any questions about who we are and what we do, comment to any post and we'll respond. And if you have any communities or journals you'd recommend we watch, let us know that too!
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: (Kasey)
Stu from MS Views and Related News stopped by yesterday, to tell me about the online resource library he's building for MS.

While he was here, he asked if I was just reading the weekly newsletter he sends or whether I was using the RSS feed of his blog for daily updates. I thought "RSS? I'm an LJer!" So I created a syndicated feed. If you want daily news in the world of MS, go add [livejournal.com profile] msviews to your friends list.

Also, thanks to everyone who responded to my poll! I'll leave it open for another week or so, in case more readers want to weigh in. (Oh, and if you don't have an LJ account but want give your opinion on the poll, this journal does accept anonymous comments!)
msf_staff: (Kasey)
This week, I've spent a lot of time evaluating the MSF Ambassador applications; this afternoon, I spent an hour with Jeff Segal. All of this has served to remind me of one very important fact - one that all the MSF staff try to keep in mind: The people who know best how to live with MS are the people who do live with it every day.

As I've said before, the MSF is a 'people first' organization. We're here to help people with MS with their immediate, real-time needs, and the first need we meet is treating people with compassion and respect. If you call us during our working hours, you will get a live person on the phone - no pressing 1 for this department or 2 for that one, but a live, friendly voice. We listen to what you have to say.

So in that spirit of listening, a poll!

I've been wondering, what would the readers here like to see in this journal? For MS news, we've got you covered - you can get the syndicated feed at [livejournal.com profile] msfocus. (Although, I confess that our news service is suspended right now as our website is redesigned. It'll be back shortly.) But here are some other options, and you can check as many as you like:
[Poll #1388190]
msf_staff: (Kasey)
Well, if I thought the end of Awareness Month was going to mean a break for the communications department, I was wrong! (Of course, why should we be special? Everyone else around here is preparing for the Consortium of MS Centers' and American Academy of Neurologists' annual meetings.) We have so much going on!

We're working on the curriculum for our Ambassador program. That's coming together nicely, and I look forward to doing the teaching, and to helping each of our Ambassadors to select their advocacy goals. As I may have mentioned, this initiative is a pilot program for us - if it works out well, imagine what could be accomplished in communities across the country!

Also, we're working on increasing and improving our Alternative Media program, which provides our written materials in audio or video format. That's a larger job than it sounds like, since all of the reading and editing is done by our staff, who take time away from their regular duties to do it.

Our entire website is being re-designed, with improved organization and navigation. Our goal is to be the most comprehensive resource for MS information, for all types and stages of MS, available on the Internet. Plus, we're adding some helpful interactive features too.

Another thing I'm really excited about is the event we're planning for World MS Day, May 27, 2009. We'll be hosting an MS Town Hall, via teleconference. Anyone concerned with MS - friends, family members, caregivers, healthcare workers, legislators, social workers - is invited to join in, and let us know what's on their minds. What's needed in the MS community?

There are also some new booklets in the works, we're planning the curriculum for the 2010 Cruise for a Cause, and we're reviewing and updating all of our fact sheets. All of this while continuing to publish our usual periodicals.

And to top it all off, we're in a 'changing of the guard' situation. As we speak, Anne Marie is training her replacement - a lovely woman named Gay, with a proven record of producing clear and accurate information for the public. We're so sorry to see Anne Marie move on, but trust that Gay will do an excellent job and the MSF will maintain its high standard of accuracy and relevance. As an added benefit, our part-time staffer, Nicole has now been devoted full-time to the communications department. I'm hoping that I can convince both Gay and Nicole to participate in this blog with me, so we can really keep it up-to-date with what's going on in MS and MSF news.

Whew! A lot, right?
msf_staff: (Kasey)
I can't believe how long it has been since I've posted. National MS Education and Awareness Month (NMSEAM) definitely keeps me hopping!

We are just about wrapping up our NMSEAM campaign for this year. The last MS Family Day regional event for the year was held this past Saturday in Norfolk, Va. We were all over the country this year - from Florida to California, Texas to Illinois, a total of ten states I think. I had the pleasure of hosting the program in Bethesda, Maryland, where our turn-out was so large we were scrambling for extra chairs. It's great to see whole families out together, learning and enjoying the day.

The teleconferences were a big success too, both But You Don’t Look Sick: Talking with Your Kids About MS, with Dr. Paula K. Rauch, or Keeping Connected: Real World Advice for Couples Coping with Chronic Illness with Dr. Fred Foley. If you missed them, it's not too late. Instead of transcripts, this year we're providing CDs with an audio recording. Just email a request to support@msfocus.org.

We've had a nice response to the call for MS Ambassadors, too. There's still time on that one, if you want to apply - the application period runs to mid-April. You can learn more about it and get an application form here, but I'll let you in on a few of the behind-the-scenes details. I'm going to be leading the training, and by the time I'm through with our Ambassadors, they will really know all the programs and services available to MS patients from the MSF and other MS Coalition members. And I plan to help each person develop an advocacy goal and help them achieve it! If you've got a message you'd like to share with the MS community, this is your chance.

We have a handful of MS Awareness Kits left over. This year's kit was packed with info on coping with the unpredictability of MS, and with the invisible symptoms. If you didn't receive a copy and would like one, email awareness@msfocus.org.

Finally, I'd just like to mention that we'd LOVE your feedback. If you took part in any of the National MS Education and Awareness Month activities or programs, or if you just have a suggestion for the future, drop me a comment. I'd really love to hear from you.
msf_staff: (Anne Marie)
Talking about MS isn’t always easy, no matter who the audience. But when it comes to questions from your kids, the conversation might seem even harder.

If you’re wondering how to talk about symptoms that come and go, the invisible effects of MS, or just wondering how and when to start the conversation, join the MSF for a free national teleconference with guest speaker Dr. Paula K. Rauch, founding director for the Marjorie E. Korff Parenting At a Challenging Time (PACT) Program at the Massachusetts General Hospital's Cancer Center.

“But You Don't Look Sick: Talking With Your Kids About MS” will take place at 8 p.m. EST Wednesday, March 11.

To participate, click this link five minutes before the call start time at 8 p.m. Eastern (7 p.m. Central, 6 p.m. Mountain, 5 p.m. Pacific.) This link will help connect both your browser and telephone to the call.


Registrations are also being taken for the second MSF teleconference in March, “Keeping Connected: Real World Advice for Couples Coping with Chronic Illness” with Dr. Fred Foley, scheduled for 8 p.m. EST on Wednesday, March 25. To register, please call (800) 225-6495, ext. 172 .
msf_staff: (Anne Marie)
This morning, Dr. Rob Godsall looked over our crowd and asked "How many of you forgot you had MS while you were on this cruise, looking out at the ocean, or sitting with friend at dinner?"

Hands shot up around the room. "Take life for what it is," he said. "Give MS its due, but give yourself your due, too."

Read more... )
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: (Default)
Derrick ([livejournal.com profile] haha145) managed to upload some photos from the ship. Unfortunately, he didn't include any captions, but using my Sherlock Holmes-like skills of deduction (i.e. I looked at the dates on the photos and compared them to the itinerary), I managed to figure out the details. Here are the first few.

2 photos )