Monday, December 28, 2009

Oral Medication

Okay, pills for MS are not yet available, but they are coming soon. Soon is a word we hear about medical trials quite often. We do not know exactly when soon means, but we are closer than ever before.

There are five, yes, five different possibilities of oral medications in trials at this time. The first two approved will probably be cladrbrine and fingolimad. Familiar names — coming soon to a pharmacist near you.

Many of us with MS have been waiting for these two oral medications to reach the market. When it happens, I hope there are plenty of pills and that they make a difference in our lives!

Thursday, December 24, 2009

My Card for You

For the Christmas Tree, Garry used IFL Labs software for the fractal and Jasc animation software for the animation.

Thursday, December 10, 2009

Pioneers in Research

The University of Texas Southwestern (UTSW) is one of 23 schools nationwide to receive a grant from Howard Hughes Medical Institute (HHMI), called Med to Grad, helping Ph.D students learn to move laboratory research to clinical trials.

Dr. Helen Yin started the program at UTSW, calling the participating students pioneers.

"This major grant from HHMI is a creative initiative that highlights the fundamental linkage among our core missions of education, research and patient care," said Dr. Daniel K. Podolsky, president of UT Southwestern. "It will significantly further out highest priorities as an academic medical center committed to biomedical research and its translation into innovative patient care."

Monday, November 16, 2009

Research Studies

Want to volunteer for a medical research study?

UT Soutwestern sent a press release about ResearchMatch where volunteers can be matched — online — to a scientific research project, or clinical trial, for which they might qualify. The National Institute of Health gave UT Southwestern a grant to help quickly move laboratory discoveries into actual therapies.

This new allows the medical community "to cast a wider net into a deeper pool of potential subjects.” Both healthy people and those with illnesses and conditions can take advantage of this opportunity!

Saturday, November 14, 2009

MS and Evils

One of my favorite online friends Michael B. Gerber doesn't write in his blog about MS, he writes about life. His happens to be a life with MS, so MS sneaks in there now and again. You may notice his blog "Perspective Is Everything" in my "Favorite MSer Sites" list.

Last week Michael sent me a story about medication and side effects. He asked if I had something to add, but it was good, as his writing is. I did, however, manage to throw in a word or two and make a change here or there. Read our post here: The Lesser of Two Evils

His is a blog certainly worth reading. While you're there, look around. Enjoy.

Friday, November 06, 2009

Pain and MS, Yes, It Hurts

I wrote a series of articles for Health Central on Pain and MS, covering the types of pain and treatments. These are general, just to give you an idea. I am sure there are some pains as well as some treatments that have been left out. Please let me know! The best idea is to talk with your doctor about any pain and how to treat it. Here is the article series —

Pain and MS

Pain and MS: Neuropathic Pain

Friday, October 16, 2009

Biking for MS

The National MS Society sponsors 100 bike events to raise funds for MS. All of the participating bikers have one destination — A World Free from MS! Sounds like a place I would like to go there one day. How about you?

My friend, my college roommate many years ago, has a friend who was ready to bike, so she dedicated her ride to me. We met only online. Georgia sent these fabulous pictures of her with her New Orleans team on their ride. Unfortuneately, they were unable to complete the ride as scheduled because of Louisiana's famous weather. Too bad.

They had fun and MS appreciates their contribution. Thanks, Georgia Kobos Thomas!

Wednesday, September 16, 2009

Health Central

Health Central is a network that provides information about 40 or more specific diseases and conditions. The information includes blogs and personal stories by people actually living with or touched by those conditions.I write for the multiple sclerosis section.

Each condition also has a section for questions -- any question -- answered by others who may have experience with the question topic.

Browse the site, share your stories or ask a question. I'll see you there!

Thursday, September 10, 2009

MS Survey

Do you want a voice in MS research? Here's a chance.

Lisa Emrich of Brass and Ivory posted this yesterday and asked that we copy and post it. The link to the survey is included. It took me less than 10 minutes. There was no space specifically designated for comments, but I put them in the spaces provided for "other." Will they be read? I hope so.

Here is Lisa's post:

Share Your Thoughts on MS and Genetic Research!!

HereEarlier today, I was contacted by Virginia Hughes who is a freelance science writer with a special interest in genomics and disease, specifically autism and schizophrenia.

She is participating on an ethics panel at the 2009 Cold Spring Harbor Laboratory (CSHL) conference on Personal Genomes. Virginia says that "they've ask me to comment on what I think is the current and future appetite for genetic testing among people who belong to various disorder advocacy organizations, such an MS organizations."

She is looking for solid numbers to include in her presentation, so created a survey about our thoughts on Multiple Sclerosis, Genomics, and Genetic Research.

The survey is simple - only eight short questions. Virginia would appreciate receiving at least one hundred responses so that the results might show some meaningful trends. Perhaps we could spread the word and get even more than that.

Please complete the survey and be sure to mention the MS blogs and groups where you often read MS-related information.

Thank you,

Lisa Emrich

Feel free to copy/paste this post in its entirety and post it on your blog and at your favorite MS forums, message boards, and social networks.

Tuesday, September 08, 2009

Living with MS

I got this from Mike Deegan on Facebook. It takes only one minute and is a good illustration of life with MS.

Saturday, August 01, 2009

I Am So Lucky

Merely Me asks a question of the week on her MS site located on Health Central. This week the question is What are you grateful for today? She always gets interesting answers, each totally different than the one before. This is worth reading. Here is my answer to this week's question:

This is a great question because it makes us think beyond our usual inconveniences and pain. What a good topic for those of us who live every day with a chronic condition; actually gratitude is a good thinking mode for all of us.

At one time (when I was a viewer), Oprah suggested everyone keep a gratitude journal. We were to list three things we are grateful for every day. Many of my items were repeats day after day.

There are only so many big things, and then circumstances took away the one about the US not involved in active war, so there are fewer big things. Then I started thinking of small things. I am still thankful for big things like health, family and friends, but now I find pleasure in successfully completing a tasty dinner.

Each day when I smile or laugh for any reason, I am grateful. When I hear my son (either or both) is happy, or talk with a giggling grandchild, I am grateful. When my foot is in the right position, I am grateful. There are so many things, some relating to my MS and some not; there are tiny miracles throughout the day and I know I am lucky.

I feel grateful that I am so lucky.

Thursday, July 23, 2009

Anthony's Science Fair Survey for MS

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.

If you would like to leave a comment for Anthony, here is his original request on Health Central.

Saturday, July 18, 2009

MS Progressive Types: Happiness

This s the last artical in the series on Progressive MS for the MS Section of Health Central. This one summarizes the topic with a question-answer format. There is one left. The FAQ article was first published June 30. Here it is --

MS Progressive Types:
Living with Happiness

MS was never part of the my life plan. Like most, my initial MS diagnosis was a long and bumpy road. When my MS became progressive, the road changed to a detour in uncharted territory with no end.

How can I face such a bleak future?

It seems to me that I have a choice between two basic options:
  • I can live with Progressive MS and be sad, grieving for the life that is not to be. I can be angry because it's just not fair. With every new symptom, every hint of a potential new symptom, and each function that is harder or slower or just not there any more, I can become more grumpy and cranky. Or,
  • I can live with Progressive MS and come to peace with it. I can learn to accept each new symptom and delight in things I am still able to do. I can find new ways to enjoy things I have always enjoyed and even find new things to appreciate. I can choose to make an effort to maintain a positive attitude and be as happy as I can be.
Notice that both of these choices still include Progressive MS. I do not like it, but I cannot eliminate it, and I can still choose to be happy.

Tuesday, July 07, 2009

MS Progressive Types: Frequently asked Questions

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.

Wednesday, July 01, 2009

MS Progressive Types: The Human Side

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.

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Tuesday, June 23, 2009

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.

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Friday, June 19, 2009

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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Wednesday, June 17, 2009

MS Progressive Types: Treatments

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.

Wednesday, June 10, 2009

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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Saturday, May 30, 2009

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.

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Thursday, May 28, 2009

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 Pro
gressive MS, and that includes MSers.

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Monday, May 25, 2009

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.

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Thursday, May 21, 2009

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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Sunday, May 10, 2009

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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Sunday, April 12, 2009

Worst MS Symptom

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.

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Tuesday, March 31, 2009

MS and Wheelchair Exercising

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.

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

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Thursday, March 26, 2009

I Miss My Mother

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.

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Wednesday, March 18, 2009

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

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;"

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Thursday, March 12, 2009

Is Nutrition the Answer?

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.

Thursday, March 05, 2009

2009 Charcot Award Winner

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.

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Tuesday, March 03, 2009

March Is My Month

March - Disaboom drafts
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.

Wednesday, February 25, 2009

Bill Cullen, Game Show Master

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.

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Wednesday, February 11, 2009

Everybody Wants a Valentine

St Valentine's Day card, embossed and printed ...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?

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Wednesday, February 04, 2009

The Value of Caring

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.