This series on Progressive MS for the MS Section of Health Central has included long articles that paint a bleak picture of life with MS. This one adds a personal touch, including stories from several MSers living with one form or another of Progressive MS. This article was first published June 17. Here it is --

MS Progressive Types: The Human Side

With Progressive MS, there is not a moment free from the thought and feel of MS. Pretty scary? This series of articles started with an explanation of the different types of MS and then continued by expanding on Progressive MS. Some of the information paints a bleak picture, but let me add a personal touch.

Here are stories from people with Progressive MS, including me, meant to enhance the picture of Progressive MS with a focus on the human side. My sincere thanks and appreciation to the contributors: David Madison, Beverley Rothstein, Denise Walbrugh and Michael B. Gerber. Each of these stories shows there can still be positive quality of life through diagnosis, symptoms and daily life with Progressive MS.

(read more)

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Progressive MS Types: Research

In the series of articles on Progressive MS for the MS Section of Health Central, this one talks aboutresearch. This article was first published June 10. Here it is --

Progressive MS Types: Research

" What is research but a blind date with knowledge?" ~ Will Harvey

At least 60% of all MSers have Relapsing/Remitting MS (RRMS). It follows that most clinical trials apply to RRMS as well. The goal of these clinical trials is to slow or prevent slipping into the chasm known as Chronic Progressive MS. There is less known and fewer treatments for progressive MS types and also less research to address those problems.

(read more)

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Pictures of MS

Can a picture convey what MS means to you?

The Multiple Sclerosis Trust is a UK charity with a mission to provide information, education for professionals, research funding and support. They sponsored a photography contest for MSers to show what MS means to them. This is exciting. My Facebook friend Denise Walburgh is a finalist in the photography contest!

There are nine photographs with a sentence or short paragraph that how or why the image represents MS. One says ". . . the picture says it all." I think each of the pictures provides a personal voice we can all understand.

Check out the pictures. Vote. Denise would appreciate your vote.

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In the series of articles on Progressive MS for the MS Section of Health Central, the third one talks about treatments. This article was first published June 3. Here it is --

MS Progressive Types: Treatments

The MS community was thrilled in 1993 when the FDA announced approval of the first drug that addressed the disease instead of just symptoms. Approval of Interferon B opened up a whole new world of possibilities for MSers. In the next few years, a family of drugs -- Avonex, Betaseron, Copoxane -- and later, a fourth option -- Rebif -- became standard treatments as disease-modifying medications for Relapsing/Remitting MS. These standard medications are known collectively by their initials -- the CRAB drugs.

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MS Progressive Types: Living with It

In the series of articles on Progressive MS for the MS Section of Health Central, the third one talks about living with it. This article was first published May 26. Here it is --

MS Types: Living with Progressive MS

Each of us has our own way of dealing with bad news, and an MS diagnosis is bad news. When someone is newly diagnosed, it is pretty scary. Some people bend over backwards to learn everything they can. Others just live with it awhile, hoping for the best. We all learn as we go along because living with MS is such an ongoing challenge. Living with progressive MS is even more of a challenge.

The positive thinker adopts the mantra: "I have MS, it doesn't have me." There are times MS tries to take over our lives. It's as if the disease is an evil entity with a life of its own, but we must make the effort to ensure MS does not dominate. We are still the people we were before MS invaded our bodies. To stay true to the positive mantra, it is more important than ever to work on a healthy quality of life. I am here to tell you Progressive MS does not indicate the end of life. Your life is different, but it is still within your power to shape it.

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MS Progressive Types: Primary Progressive and Progressive Relapsing

In the series of articles on Progressive MS for MS Central section of Health Central, the second one talks about Primary Progressive and Progressive Relapsing. It was published May 20. Here it is --

MS Types – Primary Progressive and Progressive Relapsing

Let's continue looking at characteristics of Progressive MS. I already talked about the different types of MS and focused specifically on Secondary Progressive. As this series continues, I will discuss research and clinical trials, medications, "a day in the life," and other topics relating to the progressive types of MS. Today the focus is on Primary Progressive and Progressive/Relapsing MS.

Remember, most MSers have Relapsing/Remitting MS (55-85%). Only a small minority of MSers have Primary Progressive (10-15%) and Progressive/Relapsing MS (2-5%). There is an information void for these types. That information can be confusing to the patients, and maybe even to the doctors who see so few cases compared to the other types.

(read more)

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MS Progressive Types: Secondary Progressive

In the series of articles on Progressive MS for MS Central section of Health Central, the second one talks about Secondary Progressive. It was published May 11. Here it is --

MS Progressive Types: Secondary Progressive

Secondary Progressive MS is the advanced course of Relapsing/Remitting MS. I recently talked about the different types of MS. Now I am looking at the characteristics of Progressive MS. As this series continues, I will discuss research and clinical trials, medications, "a day in the life," and other topics relating to the progressive types of MS.

First, Let's take a quick look at what it means to have Progressive or Chronic Progressive MS. Most MSers have Relapsing/Remitting MS (RRMS), so that is the type most people are likely to know a little about. Because the majority of MSers have RRMS, most information, including online articles and blogs, talks about RRMS. If a type is not specified, it is probably about RRMS. However, that leaves a void where Progressive MS is concerned. Because there is little information, many people do not know about Progressive MS, and that includes MSers.

(read more)

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Multiple Sclerosis - What Type Are You?

I have started writing a series of articles on Progressive MS for MS Central section of Health Central. The first article talks about the types of MS and their various labels. It was published May 4. Here it is --

Multiple Sclerosis - What Type Are You?

"Rose is a rose is a rose." ~ Gertrude Stein

A rose is a rose, but can we say MS is MS? After all, MS affects the autoimmune central nervous system, and that is true for every person who has MS. But after that it gets a bit murkey.

Just as a rose is identified by characteristics such as color, size and fragrance, so is each person's MS symptoms unique based on clusters, reactions, time lines, the course of the disease and any number of other idiosyncrasies. So yes, MS is MS, but not exactly. There are different categories or types of MS that provide us with some degree of understanding why symptoms of people with MS differ so greatly.

(read more)

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World MS Day

Did you register yet? Join the world MS Movement. I did!

World MS Day is May 27. It was established by the MS International Federation and scheduled for the last Wednesday in May for future years. Register as an individual who has MS, who has a friend or family member with MS, or a group as a member of the MS Movement.

You can also register an event if you are planning an observation or you can donate to help.

Look at their map to see events near you or even other people who have registered.

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What's the Dumbest Thing You Ever Heard?

Almost every disease or condition has an annual awareness campaign or a walk to raise funds. I know MS does. There are news articles, friends telling friends, and even television coverage. So much information is shared, yet we continue to walk and campaign to raise awareness. Hasn't the public learned enough yet?

Well apparently not. Julie Stachowiak found a survey by the UK MS Society to see how much the public knows about MS. Almost half - 40% - could not name even one symptom! Many confused MS with another condition all together. There is much left to learn.

Julie continues with a link to her previous post when she asked MSers about the dumbest thing people have said to them about their MS. These are good. Sadly, they are also familiar. Read them here.

I can relate. As I read through the comments, I thought of a couple I had heard.

• The week I was diagnosed, before I had a chance to make plans, a coworker asked me how long I planned to work. I told him I would probably go home around 5:30.
• When I thanked a woman for opening the door for my scooter and me, she said, "I wish I had one of those [scooter]. Sometimes I'm lazy, too." LAZY? LAZY, TOO?

Somehow, I think other MSers have heard things just as silly or insulting. Insensitive or thoughtless comments and questions are not exclusive to MS.

What have you heard?

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