Vicki

Anthony's MS Survey Science Project

2009-07-23T22:11:00Z

Anthony's dad was diagnosed with MS about seven years ago. It has "drastically changed" his entire family's lives. We all know that story. Anthony, high school student in Michigan, is participating in his high school science fair. For his project, he has a theory concerning ms and geography. In order to explore it, he put together a short survey fo MSers to answer. It is five questions and takes less than one minute. Please take Anthony's survey. http://www.surveymonkey.com/s.aspx?sm=qiI8MdTvioDo9S4bkOfHLg_3d_3d

MS Progressive Types: The Human Side

2009-07-01T20:11:00Z

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)

Progressive MS Types: Research

2009-06-24T00:45:00Z

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.

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Pictures of MS - VOTE!

2009-06-20T09:29:00Z

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.

MS Progressive Types: Treatments

2009-06-17T22:23:00Z

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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Living with Progressive MS

2009-06-10T19:05:00Z

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 Progressive 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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Progressive MS Types: Primary Progressive and Progressive Relapsing

2009-05-31T06:14:00Z

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.

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MS Progressive Types: Secondary Progressive

2009-05-28T09:22:00Z

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.

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Multiple Sclerosis: What Type Are You?

2009-05-27T06:20:00Z

I was asked to write a series of articles on Progressive MS for MS Central section of Health Central. Most of the information on the Internet is written about Relapsing/ Remitting MS which leaves a void in the progressive area, so of course I took the challenge. Let me share with my Disaboom friends.

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.

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World MS Day

2009-05-21T10:50:00Z

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 the map to see events near you or even other people who have registered.

What Is the Dumbest Thing You Ever Heard?

2009-05-11T19:20:00Z

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 even absorb it, 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?

Let's Look at Autism

2009-04-26T10:02:00Z

I couldn't let April pass without doing my part to to talk about autism. Autism touches the lives of so many people. That includes some people close to me, and one of those people is me.

April is National Autism Awareness Month. There are more than half a million children with some form of autism in this country alone. Autism is the second leading childhood development disorders, but most people do not even know what autism is. With so many autistic children in America, it would be a good idea to try Understanding Autism. For valuable information, check the National Autism Association.

Autism does not affect children exclusively. There is more than one kind of this dreaded disorder:

Classic Autism
Asperger's Syndrome
Childhood Disintegrative Disorder
Rett Syndrome
Pervasive Developmental Disorder, not otherwise specified

Visit this site to learn more about these different types.

Pay special attention to Asperger's Syndrome. Although people who have Asperger's may have awkward social skills, they are often extremely intelligent and successful. Remember Mozart, Einstein, and Madame Curie had Asperger's. Let's look further at the author of our Declaration of Independence and our third president Thomas Jefferson -- yes, he had Asperger's, too.

Worst MS Symptom

2009-04-12T22:15:00Z

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.

MS and Wheelchair Exercising

2009-03-31T20:33:00Z

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.

A manual chair, scooter or power chair makes a big difference in exercising. Just getting around in a manual chair is a bit of exercise itself, but when I tried one I found I did not have the strength to move it myself. Many people race and play sports of all kinds in manual chairs, though the chairs may be specially designed for the sport. (Did you see the wheelchair rugby during the paralympics?). A chair is hardly a hindrance to an athletic or fit person.

I currently use an Amigo scooter, so exercise is a different kind of challenge.

Sitting all the time does not automatically exempt us from the need to exercise, but it does often exclude standard exercises or aerobics. Wheelers still need to make an extra effort to remain as healthy and fit as possible. There are problems trying to maintain an exercise routine from a chair, but it is not really hopeless. The practice of weight-bearing exercises may not be practicable without a standing device, but there are all kinds of other opportunities.

Why even try to exercise? It is important to maintain balance even from a seated position -- that is, trunk balance to sit with good posture as well as balance in the mind-body relationship. It is also important to maintain arm and hand strength and agility. Good balance, agility, strength, and fitness all contribute to a good quality of life.

When I first faced life in a wheelchair, I found a program called Sit and Be Fit on public television. This program has since evolved into a series of CDs. Many of the exercises seemed too slight to make a difference then. Every movement counts, however, so do not discount them. If you have no control over your feet or legs, there are some exercises you cannot do, but the Sit and Be Fit series offers enough choices for most people of differing abilities. It's worth checking out.

Exercise is important to maintain a good level of fitness. I wrote a couple of posts on my blog, Down the MS Path, that address this topic. The first was Fitness from a Chair, addressing the topic in a general way. The second, Resistance Exercise Anyone?, was written after I saw research about the proven value of resistance exercising for MSers. Here are some other good articles I found on the Internet --

Early in the morning (that's 5 a.m. here) I watch Inhale, a yoga program on the Oxygen network hosted by Steve Ross. No, I cannot do the positions, especially since I am still in bed. I can, however, stretch while I listen. I grasp a bar on the headboard or use my good arm to help the other with the stretches. Stretches, isometrics, and breathing exercises are all the yoga I can handle any more. It's not much, but I remember that every movement counts. I have Steve Ross on TV because I like his voice and encouragement along with the background music. The idea of yoga is helpful because I agree with the philosophy. I usually go back to sleep a little more relaxed. This is a good way to start the day.

The important thing with MS is to remember to keep moving. The longer you can continue to control movement, the longer you can continue to move (just another way of saying 'use it or lose it'). With MS, moving is a good way to stay fit. If you can't do something right now, don't give up too soon. Try it again later. You might be able to do it after all. MS is funny that way.

Notes and Links:
** Disclaimer: Ask a doctor before exercising, because specific needs and capabilities may suggest adjustments.

Merely Me's article -- MS Community and Exercising
Sit and Be Fit = http://exercise.lovetoknow.com/Sit_and_Be_Fit_Exercise_Videos

Inhale = http://www.oxygen.com/TvShows/

Resistance exercise= http://vvbms.blogspot.com/2006/09/resistance-exercise-anyone.html

Fitness from a chair = http://vvbms.blogspot.com/2007/04/fitness-from-chair.html

I Miss My Mother

2009-03-26T08:51:00Z

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.

As a child, my mother, Erline, grew up in a single-parent family, taking responsibility for raising her younger sister. She still had time to play basketball for her high school in the 30s.

During World War II, she married a Flying Fortress pilot. The year was 1943, and it was the beginning of her tenure as an Air Force wife. She took to responsibilities of family and service life with pleasure and pride. She did honor to the tradition of military wives and mothers.

Erline was always athletic and her husband had taught her to play golf. Wow. A new facet of her life was born. She was a very good golfer, and she played as often as she could. Retiring from military service did not put a dent in their golfing activities. The Lake Waco golf club became the new center for a social life. Erline became active in the club, representing it in regional tournaments and even serving as Chairman of the Board for the Women's Golf Club.

Shortly after her husband died, Erline suffered a number of strokes affecting her balance. She stopped playing golf, but continued taking care of her dog, helping with her grandchildren, and offering me support. Another passion, reading, began slipping away. With each new stroke she took a step further into the world of disability.

She was there for me, offering emotional support. I offered my support in her increasing need. When there is no other help, there is still love.

We buried my mother. I will miss her.