Down the MS Path

MS Progressive Types: Frequently asked Questions

2009-07-07T14:08:00.000-07:00

This series on Progressive MS for the MS Section of Health Central is winding down. This one summarizes the topic with a question-answer format. There is one left. The FAQ article was first published June 24. Here it is --

MS Progressive Types:

Frequently Asked Questions

This series of articles about Progressive MS has a lot of information, and not all of it is easy to understand. Perhaps a good way to review the subject is to cover some of the frequently asked questions.

How do I know if my MS is a Progressive type?
MS may start with an attack followed by a continual increase in the symptom severity, and that is Primary Progressive MS.

If MS starts with a Relapsing/Remitting course, it will probably advance between ten and forty years, and the clear relapses will be replaced by a gradual worsening of symptoms. When there are no longer periods of recovery, that is Secondary Progressive MS.

Besides the functional characteristics, doctors can see that MS has advanced to a progressive course by using an EDSS (Expanded Disability Status Scale). The EDSS is a standardized measure of global neurological impairment often used in MS to determine type and severity. The National MS Society explains the scale.

(read more)

MS Progressive Types: The Human Side

2009-07-01T12:48:00.000-07:00

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)

technorati tags: multiplesclerosis, ms, downthemspath, vicki, chronicprogressiveme,

Progressive MS Types: Research

2009-06-23T17:31:00.000-07:00

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)

technorati tags: downthemspath, vicki, multiplesclerosis, progressivems, msresearch,

Pictures of MS

2009-06-19T13:35:00.000-07:00

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.

technorati tags: , downthemspath, vicki, picturesofms, msphotographycontest, multiplesclerosisimage

MS Progressive Types: Treatments

2009-06-17T15:17:00.000-07:00

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.

(read more)

MS Progressive Types: Living with It

2009-06-10T11:19:00.000-07:00

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.

MS Pogressive Types: Primary Progressive and Progressive Relapsing

2009-05-30T23:01:00.000-07:00

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.

MS Progressive Types: Secondary Progressive

2009-05-28T02:00:00.000-07:00

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.

Multiple Sclerosis - What Type Are You?

2009-05-25T23:24:00.000-07:00

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.

World MS Day

2009-05-21T03:23:00.000-07:00

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.

technorati tags: worldmsday, msif, downthemspath,

What's the Dumbest Thing You Ever Heard?

2009-05-10T15:01:00.000-07:00

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?

technorati tags: , downthemspath, ms, multiplesclerosis, msawareness, juliestachowiak, ukmssociety, mssurvey, vicki

Worst MS Symptom

2009-04-12T14:47:00.000-07:00

MerelyMe stretches me sometimes. This time she asked about the worst MS symptom and how I cope. My answer was a bit lengthy so I'll share it here. Sorry MerelyMe. To read other answers, check here.

Hmm. The worst?

Trouble walking seems to be a big one. I considered that. I resisted for a long time easing into a chair part time -- that is a life-changing move. When I finally got my Amigo scooter, I wondered why I didn’t do that sooner. For years I studied dance, including ballet, and preferred walking to driving, so I don’t say this lightly. It is not fair, it is not easy, it does take a grief process, and I would never wish it for anyone, but not walking is manageable and a wheelchair is better than falling.

I thought about another symptom,Trigeminal neuralgia (TN). TN is a face pain considered by the medical community to be one of the most painful, if not the very most painful, of pains, so it must be close to the top of the list of worst symptoms. But mine usually doesn’t last too long, and it has been dormant for several months now, so I won’t select that one as the worst either.

I think the worst MS symptom is its unpredictability. Many of us experience the unexpected awkward gait, not walking at all, not driving, shooting pains, sudden tiredness or any of the many other symptoms and the social, emotional and psychological problems that come with them. I have found that makes planning with certainty difficult at best. It interferes with socializing and especially individual relationships just we need them most. Relying on someone else for basic, daily, or even for personal needs erodes or shatters a suddenly fragile self image. when it most needs to be strong.

Yes, I think unpredictability is the worst symptom, but it can be managed, too. Learning to deal with and manage unexpected turns whenever they may emerge tends to make us stronger and more flexible for the next unwelcome turn of events. It is a constant struggle with each active symptom being the worst one, replaced by a new one or an old one revisiting. Again, it is unfair and it is not easy. Each new symptom flareup becomes a new accomplishment, building strength with experience. Unpredictable MS requires us to be vigilant, aware of our abilities at any given time, learn to deal with numerous possible problems in our own way. We realize it is not our fault, it is not under our control, we accept that our lives have changed, and we go on with gratitude for what we can do.

technorati tags: mssymptoms, multiplesclerosissymptoms, downthemspath

MS and Wheelchair Exercising

2009-03-31T13:34:00.000-07:00

Movement is a medicine for creating change in
a person's physical, emotional, and mental states.
~ Carol Welch

My online friend Merely Me asked me how I exercise from a wheelchair. I thought about it for awhile, then wrote a response. She added it to responses from two upright MSers here. I can talk only about exercise from a chair.

Being in a chair full time means there is limited movement. What does movement have to do with MS? The National MS Society (NMSS) reminds us that MS steals movement from us all. I have secondary progressive MS, and as a result I have been progressively losing my ability to move. How can I slow that loss?

Here is what NMSS has to say about exercise. A wheelchair adds another factor, but for some it seems hardly a handicap.

(read more)

Be sure to check Merely Me's article -- MS Community and Exercising -- where she talks about more than wheelchair exercising.

technorati tags: , DowntheMSPath, disability, disaboom, health, ms, wheeler, wheelchair, multiplesclerosis, mstreatment, qualityoflife, positiveattitude, independence, attitude, joyoflife, MSAwareness, wheelchairexercising,

I Miss My Mother

2009-03-26T00:53:00.000-07:00

About 15 years ago, my mother suggested she and I take a cruise ship to the Bahamas. It sounded like fun and I agreed. My MS put me in a wheelchair, but she could push me, so off we went. The weather was rough, and once on the ship, the choppy waters exaggerated the ship's rocking back and forth. Many of the passengers were feeling sick, my mother among the worse. She spent much of her time curled up on the floor under a spiral staircase. We were having the cruise of a lifetime!

Mother felt so badly because she intended to help me on our vacation. Instead, she was the one who needed help. I was just fine -- the waves did not affect me, perhaps because I was in the wheelchair.

The Poetry Is in the Pity - Wilfred Owen (Mar 18, 1893-Nov 4, 1918)

2009-03-18T18:55:00.000-07:00

His topic was war, specifically the Great War, and the poem that touched me was about that war. World War I was waged long before many of the technological advances that help level the field for people with disabilities today. Facing disability was a different story then.

Wilfred Owen was born on this date in 1893. In his poem, "Disabled," he tells the story of a young man who lied about his age so he could fight in the war. Wearing the uniform sounded glamorous He was just a kid, trying to impress a girl and his mates, not understanding what it really meant to go to war. Ah, the innocence of proud youth, torn from him in one short moment:

"There was an artist silly for his face,
For it was younger than his youth, last year.
Now, he is old;"

Is Nutrition the Answer?

2009-03-12T12:36:00.000-07:00

Take a bite. What are you thinking? How much thought goes into your daily diet? How do you feel? Does the food you eat make you feel better? Is it just comfort food, or actually healthy food? It's time to think about these things because March is National Nutrition Awareness Month.

So, does the food we eat make us healthier? What is the role of diet in health care? At the very least, a good diet adds to good health and a healthy outlook. For some conditions and certain diseases, healthy eating is actually an alternate treatment option.

2009 Charcot Award Winner

2009-03-05T13:42:00.000-08:00

Professor John Prineas of the University of Sydney received the 2009 Charcot Award. It was awarded by MSIF in recognition for his "life-time contribution to the world of MS." Read more about Prof. Prineas and the Charcot Award. Scroll down to see the list of previous winners.

This is MS Awareness Week (Mar. 2 - 9). Prof. Prineas provided evidence that myelin could be repaired and challenged traditional MS concepts. His work spanned decades as he collaborated "with colleagues on a truly global scale."

Thank you Prof. Prineas, and Congratulations.

technorati tags: downthemspath, charcotaward, msif, uiversityofsydney, professorjohnprineas, ms, multiplesclerosis, msresearch

March Is My Month

2009-03-03T12:59:00.000-08:00

March is my month. Well, actually, it is National Multiple Sclerosis Education and Awareness Month. MS has totally changed the direction of my life, and friends and family and the public at large do not understand. There are so many things I do not know either, so March is my month. In addition, March 2 - 9 is MS Awareness Week. The National MS Society (NMSS) recognizes companies for boosting the movement’s visibility during this week.

Why do we need awareness? Although many people have heard of MS, most people do not know much about it. I read in the current issue of Ability magazine* about one man's experience with an ophthalmologist who had misconceptions. The doctor, checking Charlie's optic neuritis, told him he had MS so he was dying. Charlie was stunned.

Bill Cullen, Game Show Master

2009-02-25T03:19:00.000-08:00

watch game shows to keep my mind active. I have watched quite a few different ones over the years, and I have found some game show hosts that I like more than others. One of my favorites is Bill Cullen (Feb, 18, 1920 - Nov. 7, 1990). Last week was the anniversary of his birth.

Bill Cullen was usually positioned behind the podium as the show opened instead of running out in the beginning like most game show hosts. He had a disability, an awkward gait, as the result of polio as a child, but he was not disabled. That was evident by his long career beginning with radio game shows in the 40's and ending in the 1980's. He hosted 23 game shows -- including the original Price Is Right -- and served on panels and as a guest celebrity contestant. He died in 1990.

(read more)

2009-02-14T12:24:00.001-08:00

Everybody Wants a Valentine

2009-02-11T12:47:00.000-08:00

Image via Wikipedia

February is Creative Romance Month. It peaks in the middle with Valentines Day, the day when lovers express their love for each other. Everyone wants to be loved. In fact, it has been scientifically proven we actually need love, and there are many reasons why we love. At this time of year, due largely to seasonal commercialism, everybody wants a valentine.

Remember in elementary school when you took a card for everyone in your class and you knew everyone in class would give you a card, too? You still took special pains to select just the right card for that one special classmate. And then you went through the cards hoping your chosen person did the same thing for you. Valentines Day - when lovers express their love, when children express crushes with little cards. I remember one year, however, the teacher suggested we give valentines to just that special classmate. My mother said, "No, give one to each of your classmates." I was glad she did, because I remember a few classmates held only my valentine. My mother taught me generosity and compassion. Everybody wants a valentine, don't they?

The Value of Caring

2009-02-04T20:20:00.000-08:00

How much is $375 Billion and why do we care?

$375B is more than $1000 for every person in the United States. It is almost half of the the $800 Billion figure of the Troubled Asset Relief Program (TARP) already passed by Congress last year and being paid to banks, financial institutions, and the Big Three automotive companies.

Focusing on family caregivers, $375B is an average figure provided by the AARP Public Policy Institute in a report called Valuing the Invaluable: The Economic Value of Family Caregiving, Update 2008. $375B is based on the middle estimate of the number of caregivers if they were paid the middle estimated hourly wage of 2008. The report clearly states that the number of caregivers is increasing, and of course, they are NOT being paid.

(read more)

Online Health Networks getting Bigger!

2009-01-29T02:27:00.000-08:00

Take a look at everydayHealth, a network dedicated to good health. Called the preeminent online health destination, everydayHealth was enhanced in October 2008 by a merger of Revolution Health and Waterfront Media.

This site focuses on maintaining good health, but there are articles and groups that support specific conditions and diseases as well. Check out the Revolution Health Multiple Sclerosis Support.

everydayHealth provides health information from A to Z, including active discussions, expert advice, and even recipes. There is so much to take in, but take your time. There is more.

Wellsphere is "combining forces" with Health Central., a leading publisher of online health

In a joint message from Christopher M. Schroeder, CEO of HealthCentral and Ron Gutman, Founder and CEO of Wellsphere, they said, "Our communities offer unparalleled insight, practical advice, and inspiration for people who want to live better and fuller lives."

Look at the tips on fashion recently posted by MerelyMe in the Health Center's Multiple Sclerosis Central. Browse through this section and you will find columns written by other favorites such as Lisa Emrich and Mandy Crest.

technorati tags: wellsphere, healthcentral, revolutionhealth, waterfrontmedia, everydayhealth, healthnetworks, downthemspath

January Health Observances

2009-01-28T14:42:00.000-08:00

The month of January has important health observances and I want to talk abut two of them.
January is National Glaucoma Awareness Month, sponsored by Prevent Blindness America.

Glaucoma? Many of us know people who have had glaucoma without having a disability. It cannot be cured, but it is often manageable. There are several treatments including eye drops, oral medication, and surgery. My uncle had surgery and has enjoyed good sight for years now. So if there are treatments, why is an awareness month needed?
(read more about glaucoma awareness
and preventing birth defects)

technorati tags: DownthMSPath, disability, health, healthcare, parenting, children, parents, Vicki'sblog, blindness, attitude, joyoflife, glaucoma, birthdefects, eyecare, vision,

MS and Depression?

2009-01-24T01:02:00.000-08:00

If you have MS, or even another chronic disease, chances are you are familiar with depression. Merely Me interviewed a psychologist about the relationship between biology and psychology when a chronic illness is involved.

Read her interview. As usual, she did a good job.

technorati tags: , merelyme, msanddepression, downthemspath