A Collection for a Cause

The Accelerated Cure Project is "a non-profit a national nonprofit organization dedicated to curing Multiple Sclerosis (MS) by determining the cause of MS."

They are collecting biological samples and data and creating the largest repository available for use by researchers. Research projects are often hindered by a limited number of study subjects and end with inconclusive results. The Accelerated Cure Project already has more than 1000 samples with a goal of 10,000 to ensure more successful projects.

As research is completed, they are developing a database of research results.

There is a lot of information here that makes this site worth visiting. They also provide down-loadable PDF's providing detailed MS information including how to deal with work and a chronic illness at the same time. This can be useful for many chronic conditions beyond MS.

The Accelerated Cure Project invites participation by requesting samples, as a collection site, or enrolling as a subject. Support them as they take sample collections to accelerate the search for the cause of MS.

technorati tags: causeofms, msresearch, downthemspath, medicalresearch

The Diving Bell and the Butterfly

This is about a movie available on DVD, but it is not just a movie. It is based on a true story that touched me personally.

The Diving Bell and the Butterfly tells the story of a high-powered business man, vibrant and active in the fashion and publication field, who had a stroke and is rendered helpless and unable to communicate. The only part of his body he learns to control is a single eye - he can blink only one eye. Of course, the story is inspiring -- he doesn't give up -- but we have heard that story before. There are other parts of the movie that inspired me beyond the standard tear-jerker. I need to talk about those.

Jean-Dominique Bauby, known affectionately as Jean-Do, was the editor of Elle magazine when he had a stroke and awoke in a rehab hospital unable to move, unable to talk, totally dependent on his medical caregivers for his every need, yet unable to tell them what he needs. However, he is fully bonscious and understands what is happening because the medical staff talks to him as if he can. He is able to learn to communicate, using his one blinkable eye.

(read more)

technorati tags: disability, caring, disabled, language, qualityoflife, goals, movies, stroke, communication

Caring for the Carers

Nursing is an art: and if it is to be made an art, it requires an exclusive devotion as hard a preparation, as any painter's or sculptor's work; for what is the having to do with dead canvas or dead marble, compared with having to do with the living body, the temple of God's spirit? It is one of the Fine Arts: I had almost said, the finest of Fine Arts. ~ Florence Nightingale

Nurses are paid for their work in the fine art of caring for people, but not all caregivers are on salary, and many do not have the luxury of time off to regain strength and energy for this strenuous task. Family is a great resource for caregivers, many of whom are unpaid full-time carers.

Often people become caregivers, not as a professional choice, but as a result of family circumstance. A spouse, a parent, a child or favorite relative may have an accident or illness that results in the need for a part- or full-time caregiver. Family members are great for this role. They often want to help anyway, and what better way than to help with daily life activities and become a caregiver?

(read more)

technorati tags: caregiver, ms, multiplesclerosis, disability, downthemspath, familycaregiver, respite

Repairing Myelin

Have you seen this site? The Myelin Repair Foundation's vision is: "To accelerate the rate of medical research in order to more rapidly bring treatments to people with diseases for which there are no effective treatments or cures."

The non-profit Myelin Repair Foundation has a goal of accelerating the science of research to licensing a drug in the market. They focus on collaboration, acceleration, and results and hope to have a myelin repair drug available by 2009. To do this they recommend a model different from the traditional research model. They have been asked to share the new model and are pleased to do so.

I learned about this site from a message from Patients Like Me. Check it out. I found it interesting.

technorati tags: myelinresearch, msresearch, researchmodel, downthemspath, patientslikeme

Smoking and MS and Men and Women

Research to measure the effect of smoking on MS has found smoke exposure is associated with a higher risk of MS. The risk appears to be higher for women than for men. Because the study cites "smoke exposure" rather than "smoking," that means second-hand smoke counts here.

Of course, the conclusion is that more research is needed. Surprise, surprise! They said the preliminary findings needed to be confirmed. But they also said further study in this area might shed light on why MS strikes so many more women than men. That might be worth pursuing.

technorati tags: smoking, msresearch, msgenderbias, downthemspath

What Do You Like?

There are many different types of sites on the Internet of interest specifically for MSers.

- Associations such as MSIF, NMSS, and MSAA that provide information, support, and programs to improve awareness, quality of life, and for fund raising

- Health networks such as Patients Like Me, Disaboom, and Revolution Health that cover MS and more, including personal blogs, discussion forums, and more

- Personal blogs or sites such as Access Denied, MS Sucks, and Brass and Ivory that chronicle their adventures and life with MS, articulate their personal opinions, and link to many other sites that do similar things

- Informative sites sponsored by companies that provide MS medication such as Avonex and Betaseron

And, of course, there are other types, too.

What do you find most interesting? Where do you find yourself visiting most often?

technorati tags: mssurvey, downthemspath, msblogs, msassociations, msmedicalsites

Bloggers Unite for Human Rights

BlogCatalog has organized a Community Human Rights Awareness Campaign. This effort challenged bloggers to do their part to help make the world a better place by posting about a particular social cause on a single day - today. Here is my contribution. My chosen topic is censorship.

Censorship is denying access to information. As a writer, I am sensitive to anything that restricts freedom of expression. As a person with a disability, I am sensitive to anything that denies access. As a reader, I am sensitive to the fact that restricting expression often leads to denying access or freedom or even life.

Censorship is a reality around the globe. Amnesty International (AI) highlights individuals who are persecuted because of what they write, produce, circulate, or read. This is not simply about crossing out content or controlling writers and publishers. People are punished for distributing or reading! People are punished for supporting or even just knowing about the unwanted ideas.

Consequently the first condition of progress is the removal of censorship."
-- George Bernard Shaw, Irish playwright and critic (1856-1950)

The AI list includes journalists, publishers, poets, bloggers, both male and female, from countries such as Russia, Egypt, Cuba and Myanmar. Crimes include articles against torture, calling for peace, or simply sending e-mails. Punishment may be pressure, but more often it is imprisonment or death.

Chinese is the most used language in the blogosphere, but its growth has been slowing in the last couple of years. Technorati's Tom Foremski speculates the slowdown is due to increasingly open censorship.

And the United States is not without it's share. The Supreme Court says there are some types of expression that really should be censored. Find the details here. And what about the children -- how can they be protected? Read what the American Library Association (ALA) has to say here. What kinds of materials are censored most often? Find out here.

The Forbidden Library lists books that have been challenged or banned in the US. It is a long list, even though it is not complete. Read the list of books and reason they were banned. The Diary of Anne Frank is on the list because it is a "real downer." It would be funny if it wasn't so sad.

And Tango Makes Three topped the ALA list as the most challenged book of 2007. It is about two male penguins who care for an orphaned egg. In fact eight of the top ten books were challenged for sexual or homosexual subjects. Huckleberry Finn was banned for racism. Children's books are often targeted because they encourage the kids not to obey their parents.

It is as if by banning the written word, the unwanted activity no longer exists. If our kids don't read about it, they will never do anything bad. After all, isn't that how it happens? And what about the kids who don't read -- do they do what their parents tell them?

"Censorship, like charity, should begin at home;
but unlike charity, it should end there." ~ Clare Booth Luce

National Coalition Against Censorship highlights what is happening in censorship in the arts, entertainment, science and more. There are many interesting links from this site, including a peek at the presidential candidates and a scholarship to the NY Film Academy. Amnesty International provides links to organizations concerned with censorship.

The Forbidden Library has an impressive collection of quotes by politicians, writers, historical figures. The ALA has an informative Q&A on Censorship and Intellectual Freedom.

Albert Camus (1913 – 1950), an Algerian-French writer and one of my favorites wrote:

“A free press can of course be good or bad, but, most certainly, without freedom it will never be anything but bad.”

technorati tags: censorship,, blogcatalog,, human, rights,, amnesty, international

An Interesting Read

I learned a new word today - solumedrol. Well, actually it is a medication new to me. When I look it up online, the definition of methylprednisolone displays. Oh. Maybe it's just a different name.

When I first read it I thought it described a condition of extreme physical and emotional conflicts in one person's body. Only further reading took me from my assumption leap to my current understanding. I found a reference to the medication in a blog that is new to me.

Sunshine and Moonlight - A Journey with Multiple Sclerosis is written by Sunshine, AKA Kim, a patient educator who chooses to journey in a positive path through her MS. And she wants to share her sunny attitude with other MSers.

Read through several posts, look through the tabs at the top of the page for her bio, MS events, and other delights like her "Sun-Rays." She is serious and she is fun, too. This has been an interesting reading session. I hope you enjoy it, too.

technorati tags: ms, multiplesclerosis, downthemspath, msblog,

Are You Living Your Plan?

The roads we take are more important than the goals we announce. Decisions determine destiny. ~ Frederick Speakman

Remember when you were a kid and adults would ask "What do you want to be when you grow up?" Now that you are an adult, are you doing it?

I wondered how many people could answer positively, so I decided to ask. First, I went to Yahoo! Answers and submitted this question:

"Are you doing what you thought you would be doing?
Whether it was a childhood dream, formal training, a college major, or just an idea, many people find themselves doing something entirely different. Are you working in the job you pictured for yourself?

Is it what you expected? Do you regret it?"

(read more)

technorati tags: lifeplan, ms, multiplesclerosis, downthemspath, lifeinterrupted, lifegoals,

Are You Ready for Pills?

On May 22, Health Talk presents a web cast called Oral Therapies for MS.

Experts will discuss the first oral disease-modifying drugs for MS. They will tell what is in development, how they work, side effects, and when they are expected on the market. Register now and they will contact you with details. If you have a question, ask it when you register.

For a little head start, visit Fingolimod and Me to see how the fingolimod clinical test is going from the viewpoint of an MSer participating in the trial.

technorati tags: mswebcast, oralmstherapy, fingolimod, downthemspath

MSers at Risk

We have known for some time that MS and osteoporosis have a relationship. I have written about it before, and now I have found even more information.

A Health Care Industry article emphasizes it is common for MSers to have low bone mass density. Limited physical activity and steroids, frequently associated with MS, aggravate the risk.

Doctors Bowling and House wrote an article on Disaboom of hidden conditions such as osteoporosis when coupled with MS. The problem is not only that MSers are vulnerable, but that health care professionals often overlook it.

These are good reading. The articles remind us it is vital to be aware of the possibility of osteoporosis with MS, regardless of age or gender. Don't just wonder if you need a bone density test, ask your doctor. It is important!

technorati tags: msandosteoporosis, downthemspath, riskofosteoporosis

5 Ways the Internet Is Important To Me

Blogging Against Disablism: I submit this idea: the Internet
is an equalizer among people with different abilities.

Before I was diagnosed with MS, my days were active and I worked full time. I was a single mother of two boys, went to school, and I tried to have a social life, too. After my diagnosis, I continued my schedule. As the disease progressed, I moved into telecommuting before becoming a stay-at-home person with a disability. Life has changed, and living with a disability is different than any time in the past. One big reason is the Internet. Today, much of my life is occupied with my laptop.

Here are five ways the Internet is important to me:

1. Learning Information
There are all kinds of articles and news about medical research. The Internet can keep me abreast of new research and legislation. Because I have signed up with newsletters and organizations such as NMSS and MSIF, I get messages when new articles are available. It is uplifting to learn how much research in so many different areas is active in so many different regions worldwide.

I have also learned about people's dedication, personal experiences, and the ways so many people have touched others' lives. I was in awe of Sylvia Lawry when I first read her story and the significant impact she has had on so many lives, all because she loved her brother. There are many stories out there, and I plan to read them all -- even the strange ideas like administering carbon monoxide.

(read more)

technorati tags: downthemspath, disability, internet, ms, nmss, sylvialawry,

FURTHER.........

“Why is that important to you, Theresa?”

“Doctor, that’s just a simple question. Is it so hard for you to be human, to answer a simple question?” The woman leaned backwards in the chair, her arms folded across her chest. “With all that I’m paying you’d think I could get an opinion from you that any teenage boy could give!”

The man sat quietly, knowing better than respond. They had been through this cycle of behavior many times and he knew that Theresa would recognize the pattern.

“I know, I know.” The woman sighed, shaking her head in dismay.
”Seductive behavior, rejection, anger. My personal triad. Jesus, am I so fragile?” She looked at the box of tissues on the table between them, then glanced at him, as if expecting his comfort, expecting her reward, as a puppy would sit at her master’s feet,

Rather than respond with a tissue, the man spoke. “And its importance to you?”

She spoke slowly, softly, “I know….” Theresa leaned forward, extracted a tissue and daubed at her eyes, which were not tearful. As if redefining her boundary, gaining her substance. She closed her eyes, withdrawing, processing; her breathing grew deep and measured.

Waiting, the Doctor reflected back on earlier times when Theresa first came to him. A year and a half ago. Theresa had been very depressed following the breakup of her long term relationship with Sean and was hoping for relief from the pain of loneliness and despair that the breakup had engendered. As always, the tricky part of psychotherapy was to offer symptomatic relief yet present the possibility of characterological change. To help Theresa be rid of those circular, downward spiraling thoughts that strip her world of color, yet offer to her the possibility of basic change in her relating to the world; that is, the woman’s ingrained defensive posture intended to alleviate anxiety that also severely restricts growth, maturity and meaning in her life. And, if she is able, to face his own anxieties once again in helping her see what it is to be human, to acknowledge her finiteness.