msf_staff: (Kasey)
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.
msf_staff: (Kasey)
It's been an exciting week in MS and it's only Thursday! Ampyra was approved by the FDA for MS-related mobility impairment, and human trials began on a drug that is hoped to promote nerve regeneration in people with MS.

The MSF is today's featured charity on YourCause for Human Services. YourCause is an interesting site because it allows you to really connect with others who support the causes you're interested in.

In upcoming news, the MSF's Cooling Program begins its annual cycle on Feb. 1. If you're in need of a vest or other cooling items for next spring and summer, apply early! The applications will be available on once the program cycle officially begins.

National MS Education and Awareness Month is coming up quickly too. More about that soon!
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

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)
Readers, I just received this information, and I thought you might appreciate it. Our communications staff verified that it's legitimate, but other than that, I can't tell you any more than this, so email them if you're interested:

Harper Global, a pharmaceutical market research company, is searching for people who want to participate in an online market research study about living with MS. This research study will involve several brief, daily discussions on the topic of MS which will take place online from June 9 to12. To qualify you must be between 18 and 70 years old, diagnosed with MS for at least six months, and must not use a wheelchair. You must have access to a computer several times a day to answer the online questions. Identities, opinions and perceptions will remain anonymous. About 35 people will be selected to participate. Participants will be compensated $100 for their time and participation, provided they complete the entire survey. If interested in participating, email for more information.
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 )


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January 2013

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