What's New in Research?

The MS International Federation reports on research updates. Here is a summary of some of the studies and articles highlighted this month --

STUDIES
A study on motor relapses treated with steroids showed that central motor conduction times improved in those with relapsing-remitting and secondary progressive, but not primary progressive disease.
--------------------
A geographically based study looked at patients with different progressive forms of MS and found no relation between relapse rate and disability outcome measures.
--------------------
An imaging study showed selective grey matter changes in the visual cortex of patients with optic neuritis.

ARTICLES
This article outlines recent developments and difficulties in locating the genes involved in the pathogenesis of MS.
--------------------
This review of interferons looks at the evidence behind them and their mechanisms of action in prevention of relapses.

----------------------------------------
For more research news, check the MS International Federation site.

technorati tags: MS, Multiple_Sclerosis, Research

An MS Vacation

Don and Joyce restored an inn after Joyce was diagnosed with MS and Don retired from a high-tech career. They cope with the disease and maintain positive attitudes and want to share their experiences with others.

May 7 – 11 is set aside exclusively for MSers at the Inn at Jackson in New Hampshire.

Any one living with the challenges of MS is invited for a 1 or 2 night stay. There is no charge for rooms or meals. The week has been planned with morning workshops and afternoons available for rest and recreation. The workshops are also free of charge.

Workshops are given by specialists, including Dr. Karen DeJoe who is not only a doctor, but also an MSer.

Reservations are on a first-come basis. For details about this MS week, the Inn at Jackson, and the historical sites, click here.

technorati tags: MS, Multiple+Sclerosis, MS+workshop,

Tysabri to Return to Market?

Biogen Idec/Elan’s Tysabri will receive an FDA review March 6 & 7 for possible return to market.

C-SPAN may broadcast the 2-day meeting. You can send an email to encourage a yes decision.

Even if C-SPAN chooses not to broadcast for free, you can purchase rights to the commercial webcast for a substantial discount – only $20. That’s less than many pay-per-view programs. You have to apply for the discount by February 28.

See details here.

technorati tags: Tysabri, FDA+approval, MS, multiple_sclerosis

Cartoons

No -- not those cartoons.

My favorite upright* has been making his own cartoon strips. Here are three.

I especially like the first one (01). It's something many of us have experienced.

Enjoy!

*upright – a person who stands and/or walks upright

technorati tags: cartoon, disabled, wheelchair

Still Beautiful

What a beautiful woman, what a wonderful site. I first ran across Tiffiny’s site when I was looking for some new clothes that would be appropriate for my new seated status. The only catalogs I found that offered dresses for the disabled showed large, loose, muu-muu type frocks modeled by older women. They looked comfortable, but they didn’t look like my style of dress.

Then I found an e-book, "Wheelchair Fashion 101." Here was something closer to what I was hoping to find. This was style and definitely good style. The book was written by a young girl who suffered a spinal cord injury. She was still young, still energetic, and she still wanted to feel pretty. She wrote about possible outfits and where to find them. Her preferred outfits centers around pants. Her style is young, fresh, fun, and her suggestions are accessible. This is great, but she doesn’t stop there – I don’t think she even slows down.

She talks about wheelchair fashion for women and men. She goes on to other beauty tips, including skin care and plastic surgery. Then she takes the next step, offering a chance for disabled people to meet other disabled people ready to date. She has listings for single men and women, some with pictures. She has a chat room and message boards that cover any topic.

Be sure to read about her. She is well written and often published. She is well traveled, active as a disability advocate as well as in her personal life. Her mission -- to help the disabled be beautiful, sexual, and proud – is well-served here.

Meet me at Kathy's Cafe

Featuring Kathy’s Café.

Kathy is spiritual infopreneur, and writer focusing on health, wellness, spirituality and abundant living. She says her blog is "Where people gather to learn and become empowered." She supports alternative treatments and spiritual practices beginning with a positive attitude.

Her blog points to several sites. The one that first caught my attention is on autoimmune disease. She also espouses Feng Shui with a newsletter, samples, instructions and a book for sale. The third one she says is the "Best Organic Coffee, Tea & Chocolate on the Planet."

As a healthy diva, Kathy provides links to articles, recipes, other autoimmune sites, a teleseminar, and more. She links to information on alternative therapies for specific autoimmune diseases including MS

Remember these are alternative practices. Kathy wants to share the methods that help her to stay positive and feel good. This is interesting -- Take a look.

But You Look So Good

About 7 million people require some type of mobility help, a cane, walker, crutches or a wheelchair. Over 125 million Americans have a chronic condition, and some of us have more than one. Forty million are limited in their everyday lives, but some have no visible signs.

Many conditions, including MS, affect our lives without revealing characteristics to the public. Invisible disabilities bring with them a different set of potential difficulties. When you look good, your friends may not understand that you do not feel good.

Horses and Me -- and Hippotherapy

Horses. Like many little girls, my first love was a horse. I lived to ride, I loved to brush her and walk her, I kept her paddock and tack room clean with no complaints. I even felt comfortable with the way I smelled when I walked home from the stables. Life was good. My parents had to move so we sold Domino.

It was okay. I would get another horse later, and I would see other horses until then.

I taught horseback riding at a girls camp one summer. I rented horses for a ride when I could. I taught my boys to walk rented horses and then to ride. It was okay; I would eventually have horses of my own again. But then this MS thing came along and the plans changed.

There's still hippotherapy! Licensed therapists use horses with qualified disabled people. I'm not sure how to be qualified, but a doctor's okay is the first step.

The horses used in this therapy are mature, gentle, and specially trained for unconventional mounting.. The horse's rhythmic gait can lead to improved posture and balance as well as other functions, normalizing muscle tone and reducing spasticity. It sounds good, but what if I can't balance? Volunteers walk beside the horse and disabled rider to guard against falls.

Tell me more -- Infinitec.org provides information, including locations of hippotherapy locations. I found six in Texas. The American Hippotherapy Association provides detailed information about therapy with horses.

Horses! It sounds great to me.

technorati tags: MS, Multiple+Sclerosis, Hippotherapy

My Grandmother Ola

When my parents were newlyweds,


my father's parents were in a serious car accident. After several months, they both recovered. However, my grandmother, Ola, had a relapse. It was not her last one.

When my family visited my grandparents over the next fifteen years, I never knew if Ola would be in bed or struggling to walk around their small house. My mother always told me I would have been impressed with her before the accident, she was wonderful, but I did not know her then. Our relationship was based on short visits at her bedside with my brother. I didn't know what to ask or what to say. I just knew she was wonderful before the accident.

The doctor said there was no reason she could not walk; she had just given up. She was finally admitted to a nursing home, a smelly nursing home.


If we met today, I would ask her doctors if they tested for MS. Now a diagnosis can be relatively quick. When I went through it, the average diagnosis time took between 6 and 8 years. When my grandmother could not walk, they decided she had simply given up. Of course I do not really know, but I believe she had MS exacerbated by the stress of the accident.

I am so lucky to have MS now instead of 50 years ago. I know why I can't walk. I can relate to my grandchildren in my own house. The doctor doesn't say I just gave up. I am still a person.

If we met today, I would ask Ola about her life, about her dreams and wishes, and I would tell her I don't think she just gave up. I would tell her I understand.

I am sorry I did not know you, Ola.

technorati tags: MS, Multiple+Sclerosis, Diagnosis

Advocacy

"“I have MS -- MS doesn’t have me."

I have heard this since I was first diagnosed, and I heard it again yesterday. Good words -- Don’t give up.

But what happens when I cannot find a curb cut, when the door is not wide enough for my chair, when my prescription costs more than my disability income can afford, when I don’t get that promotion because the boss thinks I can't travel anymore. Does MS have me then?

No! It's not MS. What can I do?

Obstacles can be removed or reduced by changes in public policy. Anyone with a chronic disease can tell stories about challenges that make life difficult, degrade the quality of life, or just are not fair, but how do we speak out effectively?

The National MS Society web site has an Action Network that focuses on federal funding for issues relevant to MS and provides information about advocacy -- why and how.

The Lone Star chapter is providing a February workshop to help us learn to convert negative experiences into positive changes.

Find a chapter near you, learn what your state or city is doing, and get involved. Tell your story and support others who have told theirs.

technorati tags: MS, Multiple+Sclerosis,

Featuring Christina

Christina is an MSer who left a comment on Vicki’s Blog to say "howdy." I looked at her blog and found her treasure. These sites are not highlighted because they are about MS, rather because they provide glimpses of an MSer's life She has four active blogs:

1. My Journey with MS
This opens with a background aquatic scene and a nameplate. There are images, photographs, poetry written by Christina, and journal entries that include emotional moments sponsored by her MS.

2. Word Dancing
Again, poetry, color and images. Butterflies seem to be the site's icon.

3. Christina's Templates
Opening this site is familiar, beginning with the large aquatic background and the Journey with MS nameplate. Then we see a photograph of her home office with the aquatic scene on the wall. There are links to sites and people – many personal links.

4. Write Words Writing Club
Christina belongs to group blog of at least 10 writers in any format, focusing on self-expression. There are pictures and paintings with the poems they inspired.

It was fun to browse through these sites Good luck, Christina. It looks as if you are doing great!

Getting Mail

Having MS is not such a bad thing some days. However, there are definitely disadvantages to life in a chair. I can't walk, which is an excellent exercise, and I can't dance, which is lots of fun, and I can't reach my mailbox, which is pretty inconvenient.

I can't remember the last time I didn't get mail. I get bills, just like everybody else, I get birthday cards at least once a year, I get junk mail, again, just like everybody else, and I get catalogs -- lots of catalogs. My regular letter-carrier Barbara is efficient and reliable when she brings my daily mail. I depend on her and appreciate her. She works hard so she deserves her vacation and a day off each week. But here's the problem.

The neighborhood mailboxes are at the curb. I cannot reach the curbside mailbox. However, there are advantages to life in a chair. As a disabled person, I have been approved for door delivery. Often, the substitute carrier does not bring my mail to the door.

We put a sign in the mailbox aas a reminder. Red letters on a bright yellow background say "Please deliver mail to the door. Thank you." Maybe they don't see the sign.

I think it's pretty visible.
And here's what it looks like after mail delivery. Still visible.
Another view.

If the substitute walks up to the door, the
mailbox is easy to find and fill with mail.

It is also easy to see from my side of the door.

I open the door, get the mail, pay the bills online, read the birthday card and smile (at least once a year), recycle the junk mail, and relax with a catalog. Then I page through another catalog. Then I stack the rest of the catalogs for later.

I miss the mail ritual when the substitute letter carrier does not pay attention to my sign

Racing MSers

The other day I saw a list of celebrity MS speakers and was inspired by Robert Burgin who continued racing drag cars after diagnosis. Wow. A successful race car driver -- a career not usually associated with MS.

But maybe we should re-think limiting career choices just because of an MS diagnosis. My favorite upright* Garry found an article in Reader’s Digest about a young woman, Kelly Sutton. Kelly, diagnosed at a young 16, still followed her dream to become a NASCAR driver.

*upright – a person who stands and/or walks upright

MS Walk

Today I received a pamphlet announcing this year's MS Walk. The year I was diagnosed, my company sponsored a walking team. I was touched and honored.

The Dallas area walk is scheduled in April. Each National MS Society chapter schedules community walks to fund research. Last year over $47 million was raised.

MS Does Not Discriminate

In 1994 when Robert Burgin was diagnosed with MS, he thought his career dreams were over. However, he bought a car and became licensed in Super Stock. Today, he takes Avonex and is still active as a drag racer, consistently ranking well in NHRA Southeast Division II.

Featured MSer Web Site

I joined the MS Support WebRing as a source of information from other MSers. The first webring member I visited is Becky's web site called Turmoil Leads to Hope, subtitled "Helping people turn their turmoil into hope."

Becky has MS as well as other health problems, but she says her life is now better than ever. Her compassion gives her strength ss she focuses on helping others. The site has valuable links for victims of the hurricane, child abuse, and other causes such as missing children.

Becky has health and mobility problems and spends her time reaching a helping hand out to others.

Visit Turmoil Leads to Hope.