msf_staff

And what an exhausting day it has made! I'm recovering from a cold today so I've been working from home, trying to spread the word about everything we've got going on for NMSEAM. I had so much I wanted to say about it here when I first thought about it this morning, but you all will forgive me if for now - ten hours later - you just get the bare bones (i.e. the links)!

Huh, now that I think of it, you may just be thankful for that. :-)

* A new class of MSF Ambassadors will be selected. See the application for full details.

* Two national teleconferences will take place. Here are the details about the Maximizing Mobility teleconference, and here are the details for the conference on Staying Open to Change.

* Eight regional educational programs are scheduled. See this announcement to find out if there's one near you.

* Free MS Awareness Kits are available. Order yours here or click this link for a photo of what's inside. (See also the Get Involved page to learn about this year's initiative and how you can win a free t-shirt and/or be featured in MSFocus.)

* On the Facebook NMSEAM fan page and on our Twitter page we'll be sharing a fact about MS every day of the month, and asking people to pass that fact on to their networks. If you're on FB or Twitter, please think about following us there.

* Over the course of the month, as the inspiration strikes me, I'll be having a few quick (one day at most) t-shirt contests. So keep an eye out here (on LJ & DW), or on the aforementioned FB and Twitter pages.

That's all I can think of for the moment, all though I'm sure I'm missing a number of things. Please let me know what you think of these ideas, and if you have any suggestions for MSF, now or for the future of NMSEAM.

I know this is an issue on everyone's minds right now, so I thought I'd re-print this from the news section of our website.

Is the Flu Shot Safe for People with MS?
10/19/2009

Editor’s note: In this news brief, MSF Medical Advisor Ben Thrower, M.D., addresses the topic of flu shots and the flu, including H1N1, for people with MS.


It seems like everywhere you turn, there is news about the flu. What does all this mean for a person with MS? We need to clarify that there are two types of flu bugs being discussed. There is the common seasonal flu and there is the H1N1 or swine flu strain. Vaccines for these two forms of the flu come in both a nasal spray and injectable form. So, here are some general guidelines:

1) No person with MS should receive the nasal spray form of the vaccination. This form is a live attenuated (weakened) virus and is not recommended for people with MS.

2) People with MS who are on one of the beta interferons (Avonex, Betaseron, Rebif or Extavia) or Copaxone are not considered to be immunocompromised. The same is true for people with MS on no therapy. The risks and benefits of getting vaccinated for seasonal flu or H1N1 has to be looked at individually for these people. The risk of getting the flu is not higher in this group, but if they do get the flu, there is a good chance that MS symptoms will increase due to the infection.

3) Some people with MS may be considered to have lowered immune function. This would include people on immunosuppressive drugs like Tysabri, Novatrone, methotrexate, Cellcept, Imuran, Cytoxan and chronic steroids. These people should strongly consider getting vaccinated as they may be at higher risk for getting the flu.

4) The safety of the seasonal flu injectable vaccine has been established by the CDC for people with MS. We expect the safety of the H1N1 vaccine to be similar, although in fairness the vaccine will not have been specifically tested in people with MS.

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!

I was shocked to login and find that it's been nearly two months since I added anything to this blog. But now that I think about it, that sounds about right. Eight weeks to plan, implement, test and deploy our new website = eight weeks of radio silence from me. Still, I apologize to anyone reading! Very shortly we'll have new editions of Six Questions With, a video interview with MS specialist Dr. Andrew Brown, and more of my general philosophizing. Expect a flurry of posts in the next few days. :-)

For now, I'll just give you the quick lowdown.

1. The new MSF website is live and fully functional. There are a lot of new features that I'm really proud of, but perhaps I'll go into more detail about that later. For now, just check it out: http://www.msfocus.org

2. The MSF forums are FINALLY working again. If you were a former forum member, you'll need to change your password. There's an announcement at the top of each forum with instructions. The doctors are already back to work answering questions on the Ask the Doctor forum, so go hit 'em up with your questions before the deluge comes in. You can get to it through the Online Community section of the website, or at http://www.msfocusforum.com

3. The Brighter Tomorrow Grant and Computer Grant Progams are ON! Make a wish and see if it comes true. :-) The grant applications are available on the website under the Programs and Activities section. I'll post in more detail about these programs and their requirements soon.

Well, that's it for me right now. Anything on your minds?

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!

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.

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 )

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!