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This just in!

Health Central has produced some terrific Multiple Sclerosis videos over the years that are a must see.

And here is my contribution:

While you are there, check out the other offerings of the site. The conversations going on in the MS community are not only informative but are often soothing. It’s good to know that you are not the only one dealing with it.

Enjoy and spread the link. * Full discloser:

*This was a challenging shoot (4+ hours). I think I slept for 3 hours after all was said and done. Kudos to the camera man and the editors who made it seem like a smooth conversation!

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MSLOL Radio- Humor Me! Finding the funny while living with MS

On Wednesday October 19th at 8pm (EST) we will disclose a mostly unknown, un-adverstised treatment for MS that has no side effects, no co-pays and can be taken every day, all day with no possibility of addiction. Hmm…that may not be true. Let’s just say that any addictive state can be legally and safely fulfilled.

It’s all about finding and using humor to cope… But you knew that didn’t you. I mean… you read the title!  Join us at 8pm on Wednesday to hear the accounts of 5 armchair comedians who have MS and can’t cope without it, and two professional stand-up comedians living with MS who make us laugh about it even when they/we can’t stand up. We’ll hear from Jonathan Katz (of Dr. Katz, Professional Therapist fame) and British comedian Jim Sweeney (of The Comedy Store and Whose line is it Anyway, fame.)  Check out the Jonathan Katz interview with Trevis Gleason on EverydayHealth.com and Jim’s one man show My MS and Me. Both will help you find a spin on the most challenging of MS experiences that will likely have you nodding and laughing throughout.

Jim Sweeney, Improvisationalist Comedian with MS

MY MS and ME with Jim Sweeney

Dr Katz, Professional Therapist whose not a therapist, but does have MS

Dr. Katz: Professional Therapist

So, here it is once again (For me and MS cog fog peeps- repetition can be helpful me thinks. Granted cutting and pasting in iCal email alerts is even more helpful!)

Humor Me: Wednesday October 19th at 8pm (EST)
Use our new toll free number: (877) 774-3194
or listen on line at Blog Talk Radio …Oh, and while you’re there… hit that “follow” button, it’s the blue one with the word “follow” on it. This way you will be in the know and impress those of us who can’t remember anything!

Are you looking for that show you loved, the one from earlier this year?  Click here, and feel free to lather, rinse repeat!

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Stress Begets Stress Begets Stress when living with MS

Isn’t it annoying that stress has a negative impact on our health? I mean if we’re already dealing with emotional and mental strain, we clearly need endorphins not ulcers! Why isn’t there an immuno-modifier that can address this issue? And since we’re talking about lacking immune systems, let’s talk about stress and MS, because that combination is truly unjust. When you have stress and MS, it begets more stress and more MS, leading to even more stress and more MS! I pause to throw a dirty look at who or what ever is behind that serious misjudgment in human design…

(Want more? Click!)

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SSDI- From DISability to THISability

Please join us tonight for MSLOL Radio’s 11th show From DISability to THISability.
Tonight just happens to be Sept. 7th 2011 at 8pm EST

While coping with MS, we try to focus on what our abilities ARE, not what they aren’t. So leaving a career to be officially labeled Dis-anything by the government of these United States, often compromises the emotional foundation we’ve worked so hard to maintain. When you add the application logistical nightmare to the mix, it’s a wonder that any of us make it through the process.

Tune in tonight and you’ll hear from people who have made it through that process and found new meaningful ways to spend their time, often empowering them to make a difference not only in their lives, but in the lives of many.

We will hear from Kristina Erickson, the health insurance specialist from the National MS Society, who will help us demystify the process and provide some tips and tricks in getting through it. And a number of very compelling people who have been there and done that!
It’s a call in and listen show, so all you need is a telephone and the ability to dial the toll free # (877) 552-4068. Or if you prefer to listen via that link to the world at large that you call your computer… you can do that too! Go to this link and turn up the volume!

While you are waiting patiently for the show to start… enjoy the music stylings of MSbians- Katie’s Blues (Find a Cure for MS!) It’s our new show theme! Thanks Dean Kramer!

Oh, I almost forgot. If you are busy tonight… worry not! The podcast will be available after the show for listening on your schedule. Life is sweet, isn’t it?!

 

 

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Stuff You Should DEFINITELY Know!

If you don’t already listen to the smart, entertaining, informative blogcast on the How Stuff Works website  (that being, “Stuff You Should Know“) you are seriously missing out. Josh and Chuck are so many things. They’re smart, funny, self-deprecating, did I say funny? conversationalists that make all the most amusing references, ones that speak to me on a generational level. (Though I think I’m a touch older- we clearly have similar reference points!)

I listen to their podcasts quite regularly; it makes for excellent distraction while riding the bike. (Though I recommend stationary here… the laughing will be dangerous when balance is required!) The topics they speak to are everything from “How McDonalds Work” to “How Fascism Works” to “How Scooby-Doo Works” to  “Is Buthan on to Something with Their Gross National Happiness?” They run the gamut… and keep you coming back for more. Even the titles that don’t immediately appeal like: How Terror Management Works or How Agritourism Works are made fascinating by these guys. And I should mention Jeri here.. she produces the show and we know that Josh and Chuck wouldn’t sound so smooth without her! So kudos to her too. (Too patronizing? 😉 )

So here is the money moment. I wrote them a letter a few months ago about MS SoftServe and they read it on the show “How Military Snipers Work”- it couldn’t have been the one on tickling or clouds.  So, follow these links and add them to your to do list. Assuming you are able to commit facts to your long-term memory- you will be impressive at parties and on facebook status updates. Or, you’ll just be entertained for the length of the show and forget it. It’s all good!

So, listen to the listener’s mail segment that I’ve edited out of How Military Snipers Work. It’s only a minute, though be warned! Their affable personae may lure you in for good.

MS SoftServe on SYSKl!

Happy Happy Joy Joy~

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MSLOL Radio’s show 10: Guiding Paws

Join us on Wednesday July 13th for MSLOL Radio’s next show when we will meet some peeps who are living & loving & thriving with their guide dogs as well as the peeps whose life mission is to make the smart canines available to the many who can benefit from the. You’ll hear how lives improve starting with that first scratch behind the ears.
Learn what these pups can do to help with the many challenges PWMS deal with every day and prepare to have those heart-strings pulled, when they tell us about the unconditional love they share with them. How cool is that? A pupper that can help you with your daily tasks and soothe your emotional needs… And they don’t even hog the remote!
Tune in on Wednesday the 13th at 8pm EST
If you have a “tail” to share, we’d love to hear from you.

Getting help getting goods

Call toll free to listen (877) 552-4068- press 1 if you have something to say or listen on line at http://alturl.com/xkznc

Brenda and Liberty Celebrate

Taking a break after a long stroll

Liberty's got lunch!

Dean Kramer and Trisket

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See! I told you!!

You see Blog, I have proof ! The essays I’ve written for Health Central (that ones that have kept me so distracted) have been posted. So you can see first pixel that I’m on the up and up.  Here are the links for MSCentral. Right here. Just below this text. You see them?   No, I’m not being defensive! (Why is it always the other person who is defensive!) I sound like this because quite frankly, I feel funny that you thought I was in an illicit affair with another blog. There will never be another you, so please get that out of your default settings.

I know you’ll understand once you have context…

Your Next Neuro Appt: Making Sure You Remember Not to Forget

Everyone knows the first rule of preparedness when you are off to see your doctor. Bring a list. (If you didn’t know, go get a pen!) There are so many emotions that surround any doctor appointment; but when you are coping with a chronic, unpredictable, potentially progressive disease, (sheesh, just typing those words gives me the yucks!) the anxiety factor is huge. And anxiety does not partner well with clear thinking and remembering….. read more~

The Squeeky Wheel get’s a lot more than greased, it gets help.

Not everyone is like me. I’m a big-time communicator and very in touch with how I feel and what I need and I’m not afraid to ask for it. If I want a beautiful ceramic mug for my anniversary, I email a link to my husband. If I need a hug or to hear that I look nice, I tell the aforementioned person. This approach doesn’t work for everyone. Some want their needs to be understood (clairvoyance is very helpful here) and when they aren’t realized, there is disappointment. I’m all for putting it out on the table to increase the likelihood that I’ll get what I want (mug) or need (hug).read more~

 Hell-O Mommy… Pay Attention

When Madeline was born, I had been living with Multiple Sclerosis for 13 years, and on that very day I started planning what would be our first conversation about MS. Ok, maybe not that day. But worrying about that conversation was a big part of my “first time mommy-how am I ever going to do this baby thing” anxiety package. So I learned the basics, the one’s that all first time parents need to know and are forced to figure out! You know…  the holding, the changing, the nursing, the sling-ing, the bouncing, the soothing, the “sleeping” and that car seat that we couldn’t figure out-ing –These are the scenarios that humble us at a time when we thought we already knew how to do this “life” thing. With our new baby, we were reduced to preschoolers with their mittens clipped on their coat sleeves. And even though our learning curve kept us very distracted, I couldn’t ignore my fears of how this disease would impact my mom-abilities and how it would ultimately make Madeline feel. I needed to start prepping her for my unknown future as soon as possible! read more~

So blog, I hope this makes my case. I promise to keep you and all of our readers up to date on these writings. You will always be my first, blog, and I will never leave you in the internet dust. I promise~

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Dear Blog: I’ll make it up to you~

I know, I know. You are shaking your proverbial head, clucking your proverbial tongue saying, I knew after that LJBF (let’s just be friends) letter that you would forget about me. But please, blog, let me explain.

You see, the writing at MS Health Central has really picked up and I’m finding the content of that site to be valuable; I’m honored to be a part of it. And get this- I’m doing a video project there as well. (of course I could be doing the same with you, just saying..)

Then there is Wego; an incredible site that “Empowers Health Activists.” (check out the link to see what that means! It’s the blue word “Wego.” But of course you know that!) There are some very exciting things happening on that site and I’ve been contributing in many ways.  I was recently on a panel talking to pharma on behalf of the MS community.  And…I’ve  been a part of video conversations with meaningful topics like “The Decision to Use an Assistive Device”– but those haven’t launched yet, so you wouldn’t know about it. (I’ll be sure to keep you “posted” if you are interested!) Oh, and most recently I’ve been looking for other people with MS who want to be in these video conversations. So blog, please spread the word.. I’m sure that there are a lot of people with MS who would love to participate… and you are still in my top 3 list of reaching out to peeps with MS. (PWMS)

I’ve also been very busy with MSLOL Radio– the monthly webcast that highlights people who have a significant role in the community. And there are so many! (I hope you noticed that I used your name for this show; so you should feel honored.) Because I want to “give the people what they want” I am taking suggestions for topics.

And then there is MS SoftServe. Of course I’ve been talking about this with you for ages now. But things are ramping up. We have applied for our first grant and have many more apps on deck. Getting this site up and running is imminent and it will not only be invaluable to the newly diagnosed, but also to the long term-ers who don’t want to know about every possible MS symptom that may never effect them. (MSSoftServe.org is the staging ground.) And there are some amazing features for individualizing the learning experience. Oh, I forgot to tell you… I have another blog dedicated to MSSoftServe. Perhaps you’ve run into each other at the water cooler. This has been so helpful in keeping everyone up to date on our progress.

Please don’t look at me that way. I promise I won’t go so long without a meaningful entry. Hey, here’s what I’ll do… I won’t just post links to my other writings – I’ll post information about the links. That way people will stop and read you for a bit- and it will keep you update on where I am. How does that sound?

I won’t say how important you are to me; I don’t want it to sound hollow. I’ll just prove my loyalty to you and not go months without talking to you. You’ll see. It will be great!

Thanks for being my BBF*.

Love, Amy

*best blog forever!

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If You Can Dream: Learning to Thrive with Multiple Sclerosis

I recently met a documentary filmmaker named Emmett Williams. His friend Thy has been living with MS for two decades. They were having a conversation one day, about how few documentaries provide an in-depth look at what it’s like to live with MS. How can one  truly understand the MS experience with a few brief clips and short interviews. A film needs to show the intimate details of life with MS- from waking up to going to sleep and everything in between.

So, instead of lamenting that these film portraits of MS don’t exist, they are making one! How is that for proactive~

In Emmett’s words:

“If You Can Dream: Learning to Thrive with Multiple Sclerosis” will document the lives of  three people with MS — all with different variations, all at different points in their life. We will learn about their daily battles and triumphs, the importance of their support network, and the dreams they have for themselves and others who have been diagnosed with Multiple Sclerosis.*”

Once made, this film will bring its viewers closer to understanding of what it really means to live with this disease. This deeper look at life with MS, will help people better understand the variable nature of Multiple Sclerosis. Speaking as a person who has been living with it for 23 years- I  love the idea of a larger community who “gets it!”

Check out the website and watch the work in progress. If it is meaningful to you, consider making a donation. No matter the size every little bit gets this film closer to the proverbial can.

~Amy

*If You Can Dream will donate 25% of everything contributed over $10,000 to MS charities and 50% from any earnings after the film is finished.