Wednesday, January 31, 2007

Be Kind to your Caregiver

Do you rely on a caregiver? Where does your caregiver turn for support?

I wrote about our Everyday Warriors when November was proclaimed as National Family Caregiver's Month. Last month the Lifespan Respite Care Act was signed into law authorizing funding for respite care and training. The intention of these support systems is to improve the relationship between the caregiver and the care-receiver by revitalizing and avoiding burnout.

Why is this needed? Being a caregiver for a chronically ill person is a burden. Research has shown that MS caregivers experience high levels of distress and low quality of life.

The irony here is we have to take care of our caregivers so they are strong enough, physically and emotionally, to continue caring for us.

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Monday, January 29, 2007

Alternative and Complementary MS Treatments

The Multiple Sclerosis Association of America has published a booklet for MSers to help us find and evaluate these non-traditional therapies.

I talked about these treatments in an earlier post Treat the Whole MSer, and was pleased to find notice of this monograph today. This covers biologically-based and body-based practices, mind-body medicines, and whole medical systems, specifically targeting MS.

Thinking About
Complementary and Alternative Treatments is only one of several booklets published by MSAA. It is available for reading online or it can be downloaded as a PDF file.

This is a good subject to talk about with your doctor.

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Carbon Monoxide -- Good or Bad?

Carbon monoxide is an odorless, toxic gas, and we should have a carbon monoxide detector next to our smoke detector to warn us when our lives are in danger. Carbon monoxide is poison, and we should avoid it.

But wait. What about carbon monoxide with MS?

Researchers in Portugal
have found that administering carbon monoxide has a postive effect on MS -- in mice. It's not really carbon monoxide, but a protein, and the research has been limited to mice, but the researchers think administering carbon monoxide to MSers might be a useful therapy.

Of course, more research is required, and then clinical trials must be made. For now, file this with bee sting therapy and parasitic infections. Oh, and don't throw away your carbon monoxide detector.

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Hope with Stem Cells?

There is an active controversy in America concerning stem cell research. Some people think it will bring positive results for MS treatment. Some think it's just wrong.

All we really have is hope. And that hope may have been strengthened.

An MSer in Germany received stem cell treatment in Cologne, Germany, in October. He is reporting slight improvement, especially in his eyesight. Now, it's early; stem cells take time to grow, and this is only one case. The treatment
is quite expensive, but does it work?

The MS Society does not yet recommend stem cell treatment, but states there is potentia, with more research, for stem cell therapy to repair MS damage.

That sounds like hope to me.

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Sunday, January 28, 2007

What About MS and the Kids?

MS is generally considered an adult disease, but we know children are affected, too. The National MS Society (NMSS) tells us that of the 400,000 Americans who have MS, 8,000-10,000 are teenagers or younger.

The children's newsletter Keep S'myelin is available online and in printed copies. It is colorful, easy to read, and every issue covers a new topic. Children can submit stories, poems, or drawings to share with others. This newsletter even won an award: The International Summit Creative Award Competition for 2002.

These stories are helpful for children who have MS as well as children whose parent, sibling, aunt, friend or neighbor has MS. These interactive flash issues are easy enough for children to read themselves and may inspire them to submit their own stories or pictures.

You don't have to be a young child to take advantage of NMSS reading materials. Older kids have their own newsletter called Teen InsideMS where they can download PDFs of past issues.

And for those of us who are even older kids (aka adults), many NMSS brochures are also available for online reading.

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Wednesday, January 24, 2007

Me & Mine

I found another one. Actually, she found me.

Shirl left such a sweet comment, I just had to look. The commenter is Shirl who writes two blogs of her own. One is Me & Mine by Shirl which chronicles her adventures with MS amid her "regular" life, peppered with clips and animations. The picture in her profile is an owl, probably because she is a wise observer.

Her second blog Shirl's Write Time is her outlet for creative writing. She has poetry, especially Haiku, and short stories.

Like the rest of us, Shirl has some days that are not easy, but her writing style tells us she gets through those times just fine. I enjoyed reading her blogs, and I am looking forward to visiting the blogs she likes . I already tried Pete's Quiz for Fun, trivia questions written by her husband. Try it!

Monday, January 22, 2007

What Is Accessible After All?

A year ago we went to a party at a restaurant in Dallas. I went through the door in my Amigo scooter just fine, but then it was over. Steps down were the only way to get to the tables, and they were so close together my Amigo and I would not fit between them.

The staff was gracious as they directed me outside to the patio entrance. The patio was closed because it was a cold December evening, but the patio allowed me to get to the double doors leading to the dining room. Uh-oh, step up.

Luckily our party's table was the closest to the doors. Garry picked me up and carried me to the chair. The diners were all aware of my grand entrance, the food was delicious, and the staff remained attentive through the meal until I was lifted and escorted to the patio door.

Was that accessible? They certainly accommodated me. I was reminded of this outing when I read Donald Hayes' story in 360, the online disability magazine.

Hayes wanted to have his morning coffee with doughnuts from Dunkin' Donuts with a drive-up window. He could have gone to a near-by Dunkin' Donuts walk in if he didn't mind crossing busy snow-slick intersections in his power wheelchair.

Town by-laws restrict drive-up windows to motor vehicles, and Dunkin' Donuts said his wheelchair made him a pedestrian. Martin Ebel, general counsel for the Massachusetts Commission Against Discrimination offered a solution: Hayes could phone in his order and an employee would bring it out.

The restaurant is not accessible, but Donald Hayes would be accommodated.

The Dunkin' Donuts blog accepts comments, but I saw no mention of this story. The Obscure Store & Reading Room blog mentions the story and has many comments, pro and con.

Sunday, January 21, 2007

This is a Good One

I was surfing around, checking on the blogs and sites I like to visit, and one site led to another. When I was reading Michelle's surviving multiple sclerosis in alaska, she referred to another MSer with a mission.

Sean Spence is blogging through his bicycle ride from Missouri to Manhattan, starting with his current phase -- training. On snowy days, he still cycles, but he is inside on a stationary bike. His trip is intended to raise money for MS research and treatment. He is contacting people and organizations along his planned route to schedule local events for the cause. So far he has reached his goal of a 75-mile trek. He admits is isn't easy, but he did it! So far so good.

Sean's other site is especially interesting. Sharing Our Days is a collection of stories and links about people with different ongoing health conditions. He has stories and links for all types of cancer (breast, bladder, and others), alzheimer's (from the caregiver), epilepsy, multiple sclerosis, and more. He links to a touching blog about an 8-year-old Orlando girl with cancer, and supplies observations from a Lou Gherig's blogger who vows not to give up.

These are blogs about particular situations, but more about daily living with ongoing health issues. Some are MS, some are not, but they are interesting, and MSers can relate.

Check it out and share your story with Sean.

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Thursday, January 18, 2007

Treat the Whole MSer

There are several types of MS treatments and not all of them are exclusively traditional. We are often cautioned to beware of promises that sound too fantastic too be real, because so many of them are without foundation. However, even the traditional medical community is broadening treatment to include more options.

Doctors are joining their patients in embracing the idea of treating the whole person instead of just the disease. This is known as IM or Integrated Medicine. The doctor-patient relationship works toward the goal of treating the mind, body, and spirit at the same time.

Doctors realize whenever the body is under stress, it reacts. This approach to treatment begins with a relaxed state of body and mind, reducing the likelihood of side effects. Mind-body techniques create a feeling of control over your situation so you can feel more peaceful. These techniques can be as simple as deep breathing, but it can also be yoga or tai chi.

Here is a great chart showing potential benefits and potential risks from some of these alternative therapies. And here is an article giving advice when choosing Integrated Medicine techniques.

Even people who have no chronic illness or condition can benefit from some of these therapies, such as yoga or tai chi, although I can't see a healthy person opting for bee stings.

All of the links here are from
WebMD, and you might have to register to link. It's free, and it provides a wealth of information, so it's worth it.

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Sunday, January 14, 2007

Eric's Blog

I ran across an MSer blog written in a different way than other journals I have seen. Erik's Multiple Sclerosis Blog talks about his life, or as he refers to it, his "thorn in the flesh."

Erik is very specific about his symptoms and his treatment and medical experiences. Click on the sidebar "More Erik MS Stuff" to see his five MRI reports beginning with diagnosis. I told you he is specific. And did I say detailed? He also has injection pictures, but - not to worry - he is showing the Rebif from the time it is received until it has been injected, not the injection itself. Even the extra squeamish will survive.

I recognized some feelings and thoughts when he talked about symptoms and some of his research adventures.

Don't get me wrong -- he has personal posts, too, including pictures of his wedding and three young children.

It's worth a visit. Be sure to check out his links, too.

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Friday, January 12, 2007

Latest Stem Cell News

Yesterday, the House of Representatives passed the Stem Cell Research Enhancement Act, by a bigger margin than it passed last year (253-174 to last year's 238-194). The Senate will probably vote on the same measure in a few weeks.
In addition, they defeated a motion to recommit a bill restricting institutions where research takes place. To see how your representative voted, check the roll call.

New Jersey is getting ready for the bill to be signed into law. They recently approved approved plans to build a $270M state-of-the-art stem cell research facility.


The NMSS and MSIF are collaborating to host a
stem cell summit using daily webcasts beginning January 16. These might help us understand better what stem cell research can mean to MSers.

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Tuesday, January 09, 2007

Current Legislation Affecting MS

They are at it again. The new Congress is working to pass stem cell legislation (yea!) and to ensure Medicare drug costs are not too high (yea!). However, there is a downside to the legislation currently under consideration -- the re-evaluation of Medicare and Medicaid Services.

I am all for re-evaluating programs, but there is a recommendation to cut psychologist re-imbursement by 9%. As an MSer, I know our condition is subject to depression and other cognitive difficulties that can be alleviated with psychological help. As an MSer, I also know many of us are on fixed incomes and rely on financial assistance of Medicare and Medicaid, and it could affect treatment if these cuts are made.

Read about the issue and voice your opinion to your Senators and Legislator. Use the text provided, edit it, or completely rewrite it, but let them know you are concerned.

Don't forget to give your support for the stem cell and drug cost initiatives.

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Saturday, January 06, 2007

Music Soothes the Savage Beast, Even the MS Monster

The blog it is a numeric life highlights a study that reveals the healing power of music. It seems listening to music can reduce chronic pain as well as significantly alleviate depression. Sounds promising for MSers.

One study group listened to personal favorites and the other group was assigned specific relaxing music. Both groups reported improvements while the control group regressed.

So pick your music and start listening.

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Friday, January 05, 2007

Accepting Your MS

"Acceptance is not submission; it is acknowledgement
of the fact of a situation.
Then deciding what you're going to do about it."

Kathleen Casey Theisen

"Pain is inevitable, suffering is optional."

Kathleen Casey Theisen