Monday, December 27, 2010

Labor of Love

It happened on Christmas Day 28 years ago. It all began on the 22nd. We thought it would happen on the 23rd, but it didn’t. Then for sure it would happen on the 24th, but it didn’t. Finally, after 57 hours of active labor, our beautiful daughter was born. Can anyone beat that?

By active labor I mean contractions at least every ten minutes. Once that was happening, and late that evening of the 22nd, we got our bags and headed to the hospital knowing that at any minute we would become proud parents…..and we waited. After a few hours the hospital sent us away. They suggested we take a walk and come back later and so we did. Our baby wasn‘t ready to come out yet.

We returned the afternoon of the 23rd. This time they checked us in. Contractions were still coming every ten minutes, but now we were dilated to two centimeters. We called the grandparents-to-be and a few friends. Soon the waiting room was filled with our entourage and anticipation………and they waited.

With few exceptions everything after that is a bit of a blur. Late morning of the 24th , the doctors decided to induce labor and gave our soon-to-be mother Pitocin. Two hours of wild contractions later (and language that would make a sailor blush), still no dilation. “Mom” got some Demerol so she could rest and relax still contracting every ten minutes. They gave me nothing. That was how we spent December 24th.

Then on the morning of December 25th, they were preparing us for a Caesarian procedure. Finally. Just get it done….until someone made a suggestion. “Why don’t we try the Pitocin one more time?” and we did.

BAM! Wild contractions and we went from two to ten centimeters in just ten minutes. ”A baby is coming. A baby is coming.”…..or so we thought. The dilation was then followed by two hours of pushing and then “Voila”. A perfect child, our beautiful girl was born and brought into this world. The new mother finally had her healthy, beautiful child in her arms and finally got to rest.

Since then she has done everything a child is supposed to do. She has brought us endless joy, heartache, pride, grief, love and affection. Now that she is 28 years old, we can look at her and see the extraordinary woman she has become. She is beautiful, kind, smart, caring, independent and so much more. Looking at her today, I wouldn’t trade one minute of those 57 hours.

That’s what we were doing on Christmas 1982 and the day before and the day before that. What were you doing?

Participate. Make a difference. Live a life that matters.

Friday, November 5, 2010

Birthday Balderdash

I have written about birthdays in the past, yet they seem to keep coming. What’s the deal with that? Sure, I am getting older but I was getting older yesterday too and nobody said anything then.

Birthdays are like a law of nature. They are going to happen no matter what we do. We inhale and then we exhale. We continue to wake up each day and we continue to have birthdays. As sure as the calendar changes each day, a birthday is likely to occur.

What’s changed? What is different? Technology. Today I received (and the day is not over) nearly 50 birthday greetings on Facebook, a half dozen e-mails and several birthday cards. I expect more before the day is over. (For some reason I haven’t got anything from Plaxo or Linked-In. Hmmmm???)

What’s good about getting older? AARP membership? (Now you only have to be 50) Restaurant and movie discounts? (I am not old enough yet. But soon.) Medicare? Social Security? More people calling you Sir or Ma’am? (Of course, I can’t hear them anyway)

What blows me away about getting older is how long you can say you have done things for. Graduated high school 35 years ago. Friends for almos t 40 years. Had my real estate license for 32 year. Children who are 26 and 28…….and my favorite, been married for over 30 years.

I’ll tell you what’s good about getting older.

Getting older, for many of us, is an opportunity to be more grateful, more appreciative of all the good things that fill our lives. In particular, relationships, both old and new. It is also wonderful to be thought of by so many people that you know that took the time to send a birthday greeting. Evidently, the world is filled with a lot of kind people.

I like getting older. Firstly, it beats the hell out of the alternative. Secondly, it is a great reminder of all the people that matter to (even if it is just a Facebook greeting) and that matter to me. Third and finally, I usually get some presents.

Birthday balderdash? I don’t think so. I made donations to honor my friends this year, but clearly, I could never give enough.

Happy birthday? You bet it is.

Participate. Make a difference. Live a life that matters.

Sunday, September 26, 2010

The Medical Report

I remember laughing. It was almost 30 years ago and if you called my mother-in-law and asked “How ya doing?” you got the answer, the whole medical report whether you wanted it or not. Well, here it is, almost 30 years later and if you ask me, or my wife, or most of our friends “How ya doing?”, you are likely to get the whole medical report.

What happened? We got older. More importantly, our bodies got older too and with aging bodies comes more ailments, diseases….and medical reports.

The truth is that those we care about and those who care about us want to know how we are. It’s more than a morbid curiousity. But rather an “I made it” –“Did you make it too?” type of curiosity. The fact is that we are getting older and to me, that’s the good news.

For many years I have said “If we are lucky enough to live long enough, we will all have something to deal with.” That’s the good news. It means that we have lived long enough to have something. That’s life and I would rather have it than not have it. Some of us are ‘lucky enough to have our health issues earlier… me.
God willing you are in your 50’s, 60’s, 70’s or older and are healthy and strong. What a blessing. But chances are that if you have lived that long, you know someone who has had to face serious health issues and chances are that when you ask “How ya doing?”, you really want to know.

Little did I know that way back when I asked my mother-in-law “How ya doing”, the meaning and significance those three little words would take on not that many years later.

Participate. Make a difference. Live a life that matters.

Saturday, September 4, 2010

Eating Children.

The title of this piece is correct. It is about eating children.

Many, many years ago when my kids were born (now 26 and almost 28 years old), I wrote poems. Some of you may identify with them…..or at least I hope so. For years people have told me to publish them. So here are a few of them.

WARNING: Some are about eating children.

My Daddy’s Trying To Eat Me!

My Daddy’s Trying To Eat Me!

He’s nibbling at my feet

He’s chewing on my fingers

And telling me I’m so sweet

My Daddy’s Trying To Eat Me!

He’s sucking on my cheek

I am getting smaller everyday

I think I’ll be gone next week

My Daddy’s Trying To Eat Me!

I can tell from his kiss on my head

Because I am sure that what he’s doing

Is taking little bites instead

My Daddy’s Trying To Eat Me!

He calls me his Little Lamb

That’s a favorite food of his

And he thinks that’s what I am

My Daddy’s Trying To Eat Me!

He calls me his Sugar and Spice

I guess that’s the price a little girl pays

When she tastes so nice!

By Michael Gerber

There’s A Baby Inside That Lady’s Tummy!

There’s A Baby Inside That Lady’s Tummy

And she won’t let him out for nine months

She won’t let him have toys,

Or make any noise

Or even watch TV, not once

There’s A Baby Inside That Lady’s Tummy!

And we’re told that she eats everything

From the way she is showing

And her tummy is growing

I’ll bet that she’s bursting a seam

There’s A Baby Inside That Lady’s Tummy!

And you better be fast on your feet

Because inside her belly

It stretches like jelly
And you’ll be the next one she eats!

By Michael Gerber

If Kids Were Cookies

If kids were cookies

I’d the fresh every single day

I’d like to know how many kids

That I could put away

Yes, I’d eat these kids with ketchup

And even day old stew

Yes, I’d eat them by the dozen

If kids were cookies too

And when all the cookies are eaten

I kkn1ow just what I’ll do

I’ll make the rest into Kiddy Cake

And Kiddy Jello Too

By Michael B. Gerber

I hope you enjoy these. Feel free to pass them on to new or expecting parents. I always do and they seem to enjoy them.

Friday, August 20, 2010

You know you have a great mom when........

Moms don’t get all the attention and credit they deserve…..or at least the great ones don’t. I know this because I had a great mom.

Great Moms are committed and preoccupied with the well being of their family, especially their children. They are selfless, generous and always doing for others. Often they will cook, clean and make costumes for the First Grade Circus. Sometimes they are just plain nuts (like my mother who used to do a trial run of her Thanksgiving dinner the weekend before. Who wants to do that twice???). They are there to comfort and protect us. It is their role, the reason they are here.

If a child is sick, they will move mountains or dig ditches to find a treatment or cure. The word “No” is not in the vocabulary of a great mom when it comes to caring for their children.

Great Moms reach extends beyond their own family. They are often ‘maternal’ to and towards a lot of people, regardless of their age. They counsel, advise and care for everyone close to them and seem to have an endless supply of band-aids, hugs and kisses for anyone who needs one.

Usually girls learn to be women from their mom and in today’s world, boys often learn how to be men from them, and I don’t think that is a bad thing. They are teachers, playmates, nurses and disciplinarians. They are God’s gift to us all. Perhaps they are his angels on earth.

I know all this because I had a great mom. If she were alive, today would have been her 75th birthday. She died of cancer almost seven years ago and although she is no longer with us physically, she certainly left her mark on our family and she is often spoken of. Her presence is known and felt in our home. I think of her everyday.

My mom and I were close and spoke often. We saw her regularly and she was a big part of our family and lives. Now that she is gone, I don’t think that I gave her all the credit and attention she deserved. Maybe no Great Mom gets all they deserve.

Happy birthday, Mom. You will live forever in our hearts.

Participate. Make a difference. Live a life that matters.

Wednesday, August 4, 2010

Marital Advice From An Expert.....Me!

I am not a psychologist or therapist and have no formal training on how to counsel others. What I do have is a very happy marriage of 30 years and that is what qualifies me to give advice…….experience.

Ask couples who have been married many years what the secret is and you will get a variety of answers. “Respect”. “Friendship”. “Never go to bed angry”. All good answers, all valid. But I believe that my answer to the question trumps all of those answers.

My advise is different and if you follow it, all those other pieces will fall into place. My advise is to be grateful.

Remember why you fell in love and all the things about your partner that you are grateful for and tell them. By telling them you remind them, and yourself, of what it is you love about them. Gratitude is the key to happiness and to staying in love. Unexpressed gratitude is useless. It must be expressed. Otherwise it is like buying someone a present and never giving it to them. Useless.

The opposite of gratitude is taking things for granted. Whenever things go awry in a relationship, one of the parties always feels taken for granted. Don’t let that happen.

Make expressing gratitude a habit. It has taken some of us a long to learn this, but I can tell you from personal experience that it works. Gail and I just celebrated our 30th anniversary, and I can honestly say that I am more in love with her today, then I was on the day we married and I am more grateful too. Rarely does a day go by without me telling her that I love her and why. And guess what? She does the same with me.

The last several years, and in particular, living with a disability, has taught me more about gratitude than I ever could have learned in a life without incident. But don’t wait for a life changing event to learn these lessons. Remind yourself, and your partner, today why you fell in love and do it all over again.

You, and your partner, will be glad you did.

Happy anniversary, Gail. I love you more today than yesterday.

Participate. Make a difference. Live a life that matters.

Tuesday, July 27, 2010

It takes a village…..or at least it’s better that way.

There are always at least two ways to do everything. Right or wrong. Good or bad. Alone or with others.

I like to do things with others. In fact, I am certain that my life is better because of all the people in it. I can say with certainty that as a person with a disability, my life is also easier because of all the people in it.

If I need help, someone is there to help. If I need someone to talk to, someone is there to listen. If I need a laugh, someone is there to play with or share a joke. When I am there to listen to someone else, than I know that I am of value to another person.

Having people in your life and being involved with others is a great reminder that you are alive and worthwhile. It can also help one forget about their troubles for awhile and that is always a good thing.

I recently read an article about isolation (InsideMS /Healthy Living / Isolation) that was written by my friend Alison Dale. It turns out that isolation is a pretty big problem in our MS community and is often a problem for anyone living with a chronic condition. I am guessing that it is a problem for many people without a chronic condition as well. (Isolation can lead to depression and that can be a serious problem. If you or someone you know suffers from depression, please get help.)

There are many reasons why and how a person becomes isolated. Some may have to do with physical limitations or disability. Some with fatigue and sometimes it is just the belief that no one understands or cares. Whatever the reason, isolation means being alone and being alone is no way too spend all of your time.

If you are alone and don’t want to be, do something about it. Call a friend and invite them over. Go to church or temple and find ways to get involved there. Join a club or service organization. Volunteer. There are hundreds of ways to get involved with others and millions of nice, caring people in the world. Finding them is not difficult. It just requires a little initiative.

If you are not a likeable person, become one. Learn to ask questions of and about others and listen to their answers. Practice gratitude. Say hello to strangers and learn to smile. You will get back what you put out and will soon find that you have created your own community.

If you are not alone, go find someone who is. Make a difference in someone else’s life. You will both be glad that you did.

Life is better when you have people to share it with. For some people that may mean marriage or family. For others, it may mean friends or belonging to a group.

Having a full, rich, meaningful life requires people to be in it. In my case, it takes (or at least I have) a village.

Participate. Make a difference. Live a life that matters.

Wednesday, June 30, 2010

Rejection has never felt so good.

Is it the good news or the bad news? This past week and for the third time, I was turned down as a participant in a clinical trial. Getting into one of these trials as a volunteer/participant is tougher than I thought it would be. This time, however, being turned down was the good news.

This particular study was to see if exercise could improve the cognitive function of those of us living with MS. You needed to have a minimal level of physical ability and some evidence of loss of cognitive function. The doctor gave me a physical exam and then the Clinical Director administered a test of 60 questions to measure thinking skills and memory processing speed. The good news is that I answered 59 of the 60 questions correctly. A high score

The bad news was that because of my
score, I was not an eligible candidate for the study. Geez……..I may never get into one of these clinical trials.

More than half of the people living with MS will experience some level of cognitive dysfunction. Another fact is that over time, the great majority of us will experience some physical disability. Given a choice (which I am not), I would choose to have the physical disability over the
cognitive disability every time. Luckily for me, that is how the course of my MS seems to be going.

Acceptance seems to be one of the best ways to live with a chronic condition….really, to live life under any conditions. By acceptance I don’t mean complacency or resignation. I mean accepting what is true, what cannot be changed and making the most out of whatever abilities I do have.

According to the test, my cognitive function is great. Will it always be that way? I can only hope so and can take steps to maintain the status quo, both mentally and physically. But if it changes, I know exactly what will do. Make the most out of whatever abilities I do have.

Will I ever get into one of these studies? I can only hope not.

Participate. Make a difference. Live a life that matters.

Wednesday, June 23, 2010

Doing the best we can Part Four: "Never Underestimate The Power Of A Smile"

I found what I hope is the perfect ending to this series on doing the best you can. It is a very short video taken from ABC News of a graduation speech given by a very special young man. The video takes less than three minutes to watch and shows us all the power of what can be done when we do the best we can.

Student's Inspirational Graduation Speech

Participate. Make a difference. Live a life that matters.

Monday, June 7, 2010

Doing the best we can. Part three: Life and love.

Sometimes doing our best has nothing to do with physical accomplishments, careers or travels. It has to do with how we approach life, living and love. All too often, when faced with a chronic illness, a person dismisses the possibility of love and romance. After all, who would want to sign up for that in a relationship?

That said, meet Dan and Jennifer. They met several years ago, fell in love, got married and have been happy ever since. A typical love story, except for one thing. They both have multiple sclerosis.

Dan has relapsing-remitting MS and it is not as severe as Jennifer’s (or mine!). He works, he walks and he jogs about three times a week. He also cares for Jennifer.

Jennifer has secondary-progressive MS. She cannot work or walk. But she is a caregiver to Dan, helping in every way that she can.

Dan and Jennifer have something else too. They have a tremendous spirit and attitude that propels them to make a difference in the world. As a result, they are an example to everyone who knows or knows of them.

Having MS does not stop them from participating. In fact, just the opposite is true. They lead and inspire others. They fundraise, advocate and speak. They receive rewards and recognition and are featured in articles and videos. They have even figured out how to dance together. They are alive, in love and living with a chronic illness.

They are not only doing the best they can, they are doing great.

I have never met Dan and Jennifer, but have been a fan for some time now. I am always touched and inspired by the things they do and their extraordinary love for each other. Read Dan and Jennifer's blog and learn more about them. Learn about two people doing their best in life and love and be inspired to do the best you can.

Dan and Jennifer have a prayer that say every night and part of it is as follows:

“Gracious God, help Jennifer and me to accept your will in our illness. As your children we believe that you cause all things to work together for our good, both of body and of spirit. But sometimes in the midst of illness and pain we forget or doubt. Forgive our weak faith. When we become impatient, encourage us by your word. Despite our worries and suffering, help us by our lives to reflect the radiance and confidence of those certain of your promises of help. Restore us to sound health if it be your will, and enable us with new vigor and enthusiasm to serve you zealously for many years to come. O Lord, have mercy. Hear our prayer. Amen.”

I think their prayers are being answered.

Participate. Make a difference. Live a life that matters.

Monday, May 17, 2010

Doing the best we can. Part Two. When is failure a success?

When is failure a success? Every time we do the best that we can do.

Recently I was introduced to Wendy Booker. Have you heard of her? She is an extraordinary person who does amazing things. She used to be an interior designer. now she runs marathons and much more. She also lives with Multiple Sclerosis.

Wendy is a 55 year old single mom and was diagnosed with MS twelve years ago. After getting her diagnosis, she learned of a team of mountain climbers, all with MS, who were training to climb Mount McKinley (Denali). The team attempted their first climb in 2002 and due to weather, did not make it to the top. But that didn’t stop Wendy.

In 2004 she went back and made it to the top. She then decided to be the first person with MS to climb the highest mountain on every continent: Kilimanjaro, Denali, Mt. Elbrus, Mt. Aconcagua, Mt. Vinson Massif, Mt. Kosciuszko and Mount Everest, the Seven Summits. So far she has completed six of those climbs. How amazing is that?

After months of preparation, in April Wendy set out to climb Mount Everest, the world’s tallest mountain and a climb of more than 29,000 feet.

A climb like this requires much more than physical strength and determination. Many of the obstacles are unknown and unpredictable until the climber gets there and discovers how their body responds. At over 17,000 feet, Wendy’s body could no longer tolerate the lack of oxygen and extreme temperature changes, all compounded and magnified by her MS. She did not make it to the top. She did not realize her goal.

Does not making it to the top mean that Wendy failed? I don’t think so. In fact, I consider her a huge success. She did more than she ever did before. She has done and accomplished what few able-bodied people can do. She did what no other known person with MS has ever done. She has set the bar for herself and others who may want to accomplish a similar goal. She did the best that she could do. Fail? I don’t thinks so.

Wendy has set an example for all of us. We all have ‘mountains to climb’. The questions are will we and will we do the best we can?

I encourage you to learn more about Wendy by visiting her blog ( ) and website ( ). Then go climb a mountain and do the best you can.

Participate. Make a difference. Live a life that matters.

Sunday, May 2, 2010

Do the best we can. Who could ask for more than that?

I spent 26 years in management and came from the school that said “you either have results or excuses why not”. It was an approach to managing salespeople in particular that did not allow for excuses, reasons and stories about why not. We wanted results and this approach is both valid and effective in that arena and in many areas of my life today. Yet today, my view seems to have changed….softened. There are some things that we just cannot do or control.

I bring this up because I recently received an e-mail from one of my new ‘internet friends’. I had asked him to participate in something and he responded telling me why he could not attend, then saying “I can see you shaking your head and thinking; excuses, excuses.” His response hit me like a punch in the gut. OUCH! Do I really convey such a lack of understanding or sensitivity? I hope not and trust that his comment had more to do with his knowing how active I am and then comparing himself to me.

Two issues are at stake. The first has to do with excuses and the second is comparisons.


We all have excuses. We use them to justify ourselves for the things we do or don’t do; our reasons why or why not. The question we must ask ourselves is do our excuses keep us from doing the things we want to do and can do? Please know that I am less concerned with what others think of my, or your, reasons and excuses than I am with why I, or you, have them.

The first question we must ask ourselves is can it be done and then, can it be done by me, or you?


Maybe it is human nature, or some flawed instinct that many of us possess. Whatever the reason, to varying degrees we all tend to compare ourselves to others. We do this at the most superficial levels and without regard to other considerations such as physical health, socio-economic factors, genetics, personality and a whole host of other reasons that make us all different.

While it may be human nature, comparing ourselves to others is just wrong. We are each unique in a million different ways. The only person that I can honestly compare myself to is me.

Did I do what I said I was going to do?

Did I do as much as I could do?

Did I do the best that I could do?

If I needed help, did I ask for it? Did I get it?

Am I being the person I want to be?

I do a lot of things and very few of them do I do alone. I have an extraordinary support system that surrounds me and allows me to all the things I am able to do. Everyone needs support and help. Some of us just need more or different help than others.

My hope for you, for all of us really, is that if we need help or support, that we are able to get it and that we do the best we can do. Who could ask for more than that?

Over the next several weeks I will revisit this issue of doing the best we can. I hope to include stories of others who do amazing things and make a difference in the world. I hope you will check back and let me know your thoughts and stories……or at least, do the best you can.

Participate. Make a difference. Live a life that matters.

Tuesday, April 13, 2010

Five Rules for a Happy Life

I have my share of problems and challenges. I have stress, financial worries, children to worry about and a million other daily “life issues” just like everybody else does. I also have a disability and chronic disease that keeps me from working and walking. But none of that keeps me from waking up happy every day of my life.

I have broken down ‘my approach’ to life into five simple rules that I want to share with you. Why? Because they work for me. Maybe they will work for you too.

The rules are as follows:

RULE ONE: The last person you should be thinking about is you. If you are thinking about yourself, then have that thought start with “How fortunate I am”, “How lucky I am”, “How blessed I am.” Or ask questions like “How can I help?”, “What difference can I make?” But if you are thinking “Poor me”, get off the pity pot! Happiness begins with gratitude and making a difference to others.

Don’t get me wrong, we do have to think about ourselves sometimes. We have to take care of ourselves and our physical and spiritual needs. “Necessity is the mother of invention” and many of the advances that we enjoy today were the result of somebody having a problem and solving it. But if focusing on your own problems is getting you down, try focusing on and helping someone else. It will help. Remember, things could always be worse.

RULE TWO: Trust everyone. You will find that you make mistakes sometimes, but being trusting is a much better way to approach life. If you live and work in such a way that your life is an open book, you will have nothing to worry about, people will trust you and be trustworthy.

RULE THREE: Know that everything in life happens for a reason. Expect life.

Scott Peck begins his book “The Road Less Traveled” with three simple and powerful words: “Life is difficult.” He goes on to explain that the challenge many of us face has to do with our expecting life to be easy and it isn’t. He then goes on to say “that once we see this truth, we transcend it.” In other words, just knowing and expecting that life will be difficult, makes it less difficult.

Some people I know say “always expect the worse and you will never be disappointed”. I disagree. Remember, everything that happens in life happens for a reason. We get to choose what the reason is. Find something of value in every event and circumstance and you will never need to expect the worst.

RULE FOUR: Make a difference. Be involved with something. Don’t just be a member. Be a participant. Show up. Don’t sit on the sidelines and watch everyone else have all the fun. Do more. Give more. Play more. Write more. Love more. If you want more out of life, if you want to be able to say “I got more then I gave”, be a participant.

RULE FIVE: If you are not happy about something, change it. If you can’t change it, then change the way you feel or think about it. The one thing in life that we can control is how we feel about things, our judgments. Exercise that ability and you will build strong character and be a happier person.

Problems? Challenges? Sure. I have as many or more than the next guy. But those problems don’t mean that my glass is half empty or half full. My glass is overflowing.

Participate. Make a difference. Live a life that matters.

Tuesday, March 23, 2010

Knowing what to be grateful for

I get “A Quote of the Day” from the website “All About Gratitude” ( ) and love it. Gratitude is a recurring theme in my own writing and I believe that when it comes to being happy, it makes all the difference in the world. I also believe that many, if not most people, don’t know what to be grateful for.

Paul Taubman of “All About Gratitude” found this on the internet. I thought it was worth sharing. Enjoy!

I am Thankful:

For The Mess To Clean After A Party Because It Means I Have Been Surrounded By Friends.

For The Clothes That Fit A Little Too Snug Because It Means I Have Enough To Eat.

For My Shadow That Watches Me Work Because It Means I Am Out In The Sunshine

For A Lawn That Needs Mowing, Windows That Need Cleaning, And Gutters That Need Fixing Because It Means I Have A Home.

For The Teenager Who Is Complaining About Doing Dishes Because It Means She Is At Home, Not On The Streets.

For The Taxes I Pay Because It Means I Am Employed.

For All The Complaining I Hear About The Government Because It Means We Have Freedom Of Speech.

For The Parking Spot I Find At The Far End Of The Parking Lot Because It Means I Am Capable Of Walking And I Have Been Blessed With Transportation.

For My Huge Heating Bill Because It Means I Am Warm.

For The Lady Behind Me In Church Who Sings Off Key Because It Means I Can Hear.

For The Pile Of Laundry And Ironing Because It Means I Have Clothes To Wear.

For Weariness And Aching Muscles At The End Of The Day Because It Means I Have Been Capable Of Working Hard.

For The Alarm That Goes Off In The Early Morning Hours Because It Means I Am Alive.

And Finally, For Too Much E-Mail Because It Means I Have Friends Who Are Thinking Of Me.

- As seen on the internet

Participate. Make a difference. Live a life that matters.

Monday, March 8, 2010

What will you do?

The National MS Society has declared March 8-14 “National MS Awareness Week” and the MS Foundation calls March the “National MS Education and Awareness Month”. With that said, the question is “what will you do?”

Over the past few years we have become increasingly involved with the National MS Society. What I have learned from that involvement is that most everybody wants to help. They just don’t know what to do. Below are a few suggestions and I hope they will help you.

Join one of 600 MS Walks taking place from coast to coast
Better yet, join our team, the JiggyWiggits on April 18th at the Greater LA Walk around the Rose Bowl in Pasadena. The Walk is a great way to spend the day and participate in raising money to find a cure.
Click here to Join or Donate or Find A Walk Near You

Become an MS Activist
This is easy to do, free and makes a huge difference. The more voices we have, the more we are heard. The more we are heard, the better the research funding, legislation, services and more for people living with MS.
Be an MS activist.

Be a volunteer
Volunteers are needed and make it all happen. They assist with all the big events (The Walk, the Bike Ride and Challenge Walk) and with individual support and activities (Peer counseling, financial aid, referrals and resources).
Click here to Volunteer

Learn something new and share it
There is so much to know and so much information available that it is impossible for any one person to stay on top of it all. Fortunately, the National MS Society does a pretty good job of that. But having the info on their website is not enough. It needs to be read and shared with others. Learn something new about research and treatments and share it with someone you know.
Learn Something New About MS Research and Treatment

Join an MS Support Group
If you live with or are caring for someone with MS, then there is probably a Community Support Group near you. These groups provide a forum for the exchange of information and ideas on living better with MS. Join the community. No one has to go through this alone.
Support Groups In Southern California
Find a Chapter of the MS Society near you.

Host your own fundraiser
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For many people, fundraising is a four letter word. But after years of experience, I know how to make it easy. Ask the people that you give money to for help. Ask your doctor, lawyer or accountant to donate. Ask your insurance agent, electrician or plumber to help. And, if you ask everyone that you give money to for a donation, they will do it. It is a very simple concept. “You wash my back and I will wash yours.” But if you don’t ask, you don’t get. So do it today. Send them to our link. You’ll feel good and they will too.
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The first step is to increase awareness. With increased awareness comes increased funding. With increased funding comes a cure. We can all be a part of the cure for MS. The only question is “What will you do?”

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Wednesday, March 3, 2010

A Pill That Is Not Hard To Swallow

This entry is specifically for people with MS.

Today I was contacted by a representative from Acorda Therapeutics to talk about AMPYRA, the newest drug to be approved by the FDA specifically for people with Multiple Sclerosis. The drug is designed to improve walking speed and ability. They want to get the word out to our community and have contacted several bloggers to help them do that. That’s where I come in.

I am also uniquely qualified to talk about this drug because its main ingredient is 4-aminopyrodine (4-AP for those in the know), which I have been taking for the past several years. The good news about 4-AP is that it works. The bad news is that it is not an FDA approved drug, is only available through compound pharmacies and insurance companies won’t pay for it. Now all of that is changing.

To varying degrees, many of us with MS have difficulty walking. In clinical trials AMPYRA helped improve walking speeds by as much as 25%. Having taken 4-AP, the main ingredient in AMPYRA, I can tell you that I walk better and feel stronger when I take it and that is a good thing. Keep in mind that AMPYRA is not a substitute for one of the disease modifying drugs and will not impact the course of an person’s MS. But it will improve walking ability for many who take it.

Were there side effects? Yes, there is a risk of seizures and we knew that when I started on the drug. At first I took 10 mg a day. No problem. Then 20 mg a day and then 30 mg a day. No problem. Then I took 40 mg and BAM! I had a seizure that night. I dropped back down to 20 mg. a day and haven’t had a problem since.

The recommended dosage is 10 mg. twice a day. There is no evidence of incremental benefit with increased dosage, so don’t take more or you might have a seizure! Also, do not take AMPYRA if you have kidney or renal problems.

Here is what they won’t tell you…..4-AP is a leading brand of bird poison. It causes seizures in birds and that is what keeps them away. Who figured out that it might be good for people? I love modern medicine.

Acorda Therapeutics, the company that is marketing AMPYRA, is making the product very affordable for almost everyone. Like many drug companies, they have a program for the uninsured and under-insured who qualify, to receive the medicine at no cost. For those of us with insurance, the company has agreed to limit our co-pays where allowed (Sorry Massachusetts residents) to $40.00 per month. This is much less than what I pay the compounding pharmacy each month and that’s a good thing.

To learn more go to:
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Participate. Make a difference. Live a life that matters.