Tuesday, December 30, 2008

Happy New Year Resolutions

It is time again to list wishes and make promises for a new beginning.

Wait. I've done this before. Sometimes I've had level of success, but sometimes failure rears its ugly head. How disappointing to review my list and find intentions that have been forgotten or gone astray. This is a productive exercise only if I actually make an honest effort at fulfilling each item on the list. I think I did pretty well in 2008 with the resolutions that I shared in
last year's post. There has to be more though. Maybe I need a new way to make resolutions. I have to remember to allow my resolutions to be flexible so I am able to keep up with them.

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Monday, December 29, 2008

Dangerous Disability Comedy

It's happening again. A character on a new TV show has a disability.

Megan Mullally
-- you might remember her from Will and Grace -- has MS.
Well, you know how MS is. It is so volatile, and therefore difficult to diagnose, so it is also easy to deny. According to Megan's character, she has something "akin to MS." She plays a hospital administrator who relies on crutches for mobility. It sounds as if we are being set up to see some outrageous humor including pratfalls -- just what disability awareness needs!

"Children's Hospital" was written by and stars Rob Corddry who was a writer with The Daily Show, so we know he can be outside the box. Corddry's character is a doctor in clown make-up who uses humor as the best medicine. If we use The Daily Show as an example, we can expect the show to be built around outrageous humor.

Humor with a character defined by mobility issues may result in comedy of questionable style. Perhaps they should precede each episode with a warning that reminds us the humor is in the situation rather than the disability. Otherwise, it is happening again where a disability has been put on view as a laughter trigger.

Maybe "Children's Hospital" rises above that bullying and will be presented in a respectable style. Megan's previous series handled another hot topic -- gay life -- and it was presented well. Oh, wouldn't that be nice? I look forward to it.

NOTE: I am adding this note to ensure I am clear. I haven't seen the program yet, but I plan to watch, and I hope it is good. I applaud the use of people with disabilities in programs.

We all need humor. If hot topics were off limits, then there would be no topics. The disability community needs to be included in funny shows as well as dramatic shows and commercials -- just like everyone else.

Megan has proven to be a favorite comedy actress. The tragedy would be if the show makes fun of the character because of the condition "akin to multiple sclerosis." However it is done, maybe it will instigate talk. There's nothing wrong with talk.

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Friday, December 26, 2008

There Is Always Hope

At least Chelsea has hope.

Here is another condition that affects young people and has no cure. I never heard of Lafora before finding this link in a blog post written by a fellow MSer. Michael has written about New Year's Resolutions that could lead to new hope for us all.

Learn more about Lafora Disease, read Michael's resolutions, and think about some of your own.

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Thursday, December 25, 2008

Merry Christmas


For the Christmas Tree, Garry used IFL Labs software for the fractal and Jasc animation software for the animation.

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Tuesday, December 23, 2008

The Meaning of Christmas

For centuries men have kept an appointment with Christmas.
Christmas means fellowship, feasting, giving and receiving,
a time of good cheer, home. ~ W.J. Ronald Tucker

Christmas is upon us, with all the Christian and secular traditions that mean something different to everyone. What does it mean and how is it different when a disability is involved?

To find out what Christmas means to different people, I posed two open questions on Yahoo! Answers tagged for the People With Disability Group. One question asked for a least favorite thing, and the other asked for a favorite thing about Christmas. The answers were generally things I expected but with a few exceptions.

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Wednesday, December 17, 2008

Blue Christmas

Probably the reason we all go so haywire at Christmas time
with the endless unrestrained and often silly buying of gifts
is that we don’t quite know how to put our love into words.

~ Harlan Miller
As Christmas nears, the Christian community prepares for the celebration of the birth of Christianity. In the United States, at least, a large part of Society recognizes Christmas as a time for holidays, for family closeness and the warmth of friendship. It is a time for presents, for embracing all of humanity through faith, hope, and charity. Isn't it wonderful?

Christmas should be the happiest time of the year. Just because it should be doesn't mean it is.

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Saturday, December 13, 2008

Searching for a Cure

I was asked not long ago if I thought there would be an MS cure found in my lifetime. I said there were more MS researchers than ever before.

Nearly 100 young researchers sponsored by
the National MS Society attended the NMSS 2008 national convention. Here is the story. There is always hope, especially when so many young minds are working on it.

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Thursday, December 11, 2008

Look at Me! Look at Me!

MerelyMe has started an ambitious project of interviewing MSers and posting the results on her site at her Health Central site. She publishes a new interview every couple of weeks, and this week she chose me -- take a look.

Be sure to read through The Multiple Sclerosis Tapestry which includes several interviews, each different, yet each the same. We feel a certain comaraderie and at the same time realize not only is each person unique, but each person's MS is unique in the grouping and manifestation of various symptoms. The other posts are varied and generally good reads, just like the blog where I first "met" her.
Belated birthday wishes

Now, look at me again -- Jennifer Thieme of Amigo Mobility International re-published an article I posted earlier in anticipation of the possibly hectic holiday season. Now that we are deep in the midst of those holidays, it might be a good time to re-visit this one and take time to relax.

Jennifer publishes
Friendly Wheels, Amigo's e-newsletter that highlights Amigo owners of all types. It is often interesting and always fun. While you are there, look around the site. You might just see something you like. Okay. That's enough of me for now.

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Wednesday, December 10, 2008

MS is a Family Affair

I was lucky when I was diagnosed with MS. My boys were teenagers in high school, old enough to understand, and old enough to help with things. I met an MSer with very young children who was lucky enough to have family in town as well as a helping husband, but I still wondered how she did it.

When children or teenagers have a parent with MS or have MS themselves, they have the same questions as adults, and parents may not know how to answer. They often turn to the Internet for answers. Here is a young mother of two young children who was diagnosed ten years ago. She writes about Multiple Sclerosis -- Real life stories & Issues. It's worth a visit. Amanda is 26 and has 4 children! Her blog My Complications rants about daily life. She links to a Progressive MS bulletin board she helps manage on her sidebar along with a link to her recommendation of an online support group. And let’s not forget that men get MS, too. WhiteLightning is the blog of a young father, who writes in a fun story-telling style.My admiration goes out to you.

I regularly read Living Life as a Snowflake, a blog written by an MSer mom whose son compared MS with a snowflake: "...all different, no two are the same and...all special in (her) own way." What a lovely description. How lucky she is to have her son understand that well. She must have done a good job!

Raising children is not ever easy, but with a chronic disease it seems impossible. MS affects the MSer, but it doesn't stop there.

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Monday, December 01, 2008

RRMS Trial Studies Enrolling Now

Here is notice of MS trials. This is verbatim from Brenna's message:

New MS Clinical Trial Enrolling

My name is Brenna Fitzgerald and I’m writing to you from Fleishman-Hillard, a communications company, contracted to create awareness regarding two clinical research studies in multiple sclerosis. As your blog chronicles your journey with multiple sclerosis, I wanted to let you and your readers know about two global clinical research studies that are seeking adults with relapsing-remitting MS.

The Comparison of Alemtuzumab and Rebif® Efficacy in Multiple Sclerosis (CARE­MSSM) I and II studies are designed to determine the safety and effectiveness of the investigational drug alemtuzumab as compared to the FDA-approved therapy Rebif (interferon beta-1a), in adults with relapsing-remitting multiple sclerosis. The studies will look for differences between these drugs on the progression of disability and in the number of relapses (flare-ups) and brain lesions caused by MS. The studies also will compare the side effects of the drugs and monitor for risks during and after treatment.

Current therapies require frequent, long-term administration. When compared with no treatment, they have been shown to reduce the number of relapses, slow the formation of MS associated lesions in the brain, and impact progression of disability. A need still exists for more effective therapies to further slow the progression of disability.

Studies measuring investigational treatments against standards of care are advancing knowledge of these drugs on the disabling effects of MS, which may impact the patient's quality of life. Every patient in the CARE-MS studies will receive active treatment; there is no placebo. Participation in the CARE-MS trials may offer participants the opportunity to help advance research in the treatment of MS while taking a role in their healthcare.

Alemtuzumab, Rebif, the annual dose of steroids, and study-required procedures are provided at no cost.

To be eligible to participate in the studies, volunteers must be between the ages of 18 and 50 (CARE-MS I) or 18 and 55 (CARE-MS II) and meet specific criteria, including having a diagnosis of RRMS and first experiencing MS symptoms within the last 5 years (CARE-MS I) or 10 years (CARE-MS II).

For more information about the studies, please call 1-503-432-4725 or toll-free 1-888-404–MS-CARE (United States only) or visit www.CARE-MS.com. There, you will find additional information about the studies and an online prescreener, which will allow people with RRMS to determine if they meet initial eligibility requirements.

If you find this information useful, I hope you will consider sharing it with your readers and posting 1-888-404–MS-CARE and a link to www.CARE-MS.com on your blog.

Vicki, thanks for your time and consideration. Please feel free to contact me at brenna.fitzgerald@fleishman.com if you have any questions or would like to discuss the studies.

Best regards,

Brenna Fitzgerald


Genzyme Corporation is the sponsor of these studies. Bayer Schering Pharma contributed to the funding of the studies.

Genzyme® is a registered trademark of Genzyme Corporation. All rights reserved. CARE-MSSM is a servicemark of Genzyme Corporation, Ó2008. Rebif® is a registered trademark of EMD Serono, Inc.

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World AIDS Day

When America first became aware of AIDS in the 80s, it was scary for all.

Back in those days, most of my friends did not know anyone with the disease. Only people far away from our everyday lives had it and died from it, but then times changed. More and more people were dying under mysterious circumstances and amid rumors. The sexual revolution that released us from rigid moral restrictions was being trumped by fear of being exposed to the dreaded AIDS. Sex wasn't so easy any more.

AIDS, like every other chronic disease, touches the patients, their family, friends, and it doesn't ever let go.

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