My Year With MS

We live an extraordinary life and 2010 was certainly no exception. We went to Australia for two weeks and it was incredible. One of the most beautiful and friendliest places we have ever been. Then we went on a big family cruise to the Mexican Riviera. Swimming with dolphins is amazing and something everyone should do….and that’s just the beginning.

Living with MS and traveling, which I love to do, does take its toll on me. The trip ‘down under’ included two fifteen hour plane rides. While there I spent all day every day in the wheelchair. My bad. When I got home I had less ability and confidence when using the walker. Then a few weeks later we went on our cruise to Mexico. Again no walking, all wheelchair. Guess what happened next? I got a blood clot which landed me in the hospital for three days on anticoagulants. OY! Long plane rides put everyone at risk for blood clots, especially people like me with limited mobility to begin with.

Then in September I started experiencing weakness which came on very quickly. In fact, because of the rapid on-set, we were certain that it must have been an infection and rushed to see a doctor. (Have you ever tried to see a doctor at Cedars-Sinai on a Jewish holiday? Good luck!) Exam, blood, urine, the works and there it was; an infection. Thank G-d. Now we knew what was causing all of this and could treat it. Right? Not quite.

The most common form of MS is Relapsing-Remitting MS and is characterized by exacerbations, or flare ups. Periods of greater weakness and often other symptoms that last for shorter periods, usually weeks. They are followed by a recovery, often full and all too often leaving the MS’er with less ability or more symptoms than they had before the flare up. I don’t have that.

I have what is known as Secondary Progressive MS. This form of MS is characterized by a slow, steady progression of the disease without flare-ups. Or as my doctor put it “You don’t get exacerbations….unless you do.” That was me. Years without an exacerbation until 2010 and then BAM! I got one.

We will never know which came first, the infection or the exacerbation. My ability to move, stand and walk was already pretty limited. Once the exacerbation hit, the standing and walking were gone. I also could not transfer from one chair to another on my own and needed a caregiver to help me to the wheelchair, toilet, shower, back to the chair. You get the picture.

This went on for a few of months with no improvement. Then in January of this year my right calf started to swell and harden. Another blood clot? I called the doctor and he said to go the emergency room. I did. No blood clot. Hurray. They did, however, admit me and gave me three days of IVIG, an infusion treatment for acute exacerbations. While there I was evaluated by the physical rehab’ team and accepted into the program, extending my stay by another two weeks and receiving 3.5 to four hours of therapy everyday……and do you know what happened? I got stronger.

Evidently five months of not moving can really contribute to muscle loss. Though I did make a lot of progress, I am still not walking with a walker and barely (and rarely) able to stand. But it’s a start and I’ll take that.

There is also more to MS than just disease activity…...at least there is for me.

I run a monthly support group in our area for the National MS Society that continues to grow in size and value. Also, Gail and I have served three times as co-facilitators at a weekend relationships program for people with MS that the Society puts on and we have loved doing this. We hope to do it again and again. Our 2010 Walk MS Team, "The JiggyWiggits", was again one of the top fundraisers in the country bringing our four year total dollars raised to just over $130,000. (Our next Walk is April 3rd and everyone is welcome to join us. Just click JiggyWiggits.) Finally, although my blogging has slowed down a bit, it still gets a fair amount of traffic and is a very rewarding experience for me.

It must read as though our lives revolve around MS. They really don’t. There is so much more going on than I can fully address in this letter. Gail runs (and I help) her dad’s foundation (www.zachorfoundation.org ), we are starting a new business, we take time with family and friends and we manage to have things to do most every hour of every day. Add to that the fact that my beautiful wife has had some of her own health issues to deal with and we stay very busy.

And then there is MS which is like having a gorilla in the room. It can’t be ignored and when MS wants our attention, it lets us know.

My year with MS was certainly a year of challenges and changes. It was also a year of learning more about MS and about me. This year, 2011, is off to a good start. I feel fortunate, blessed and privileged and much of that is because of the people around me. My wife, my children, my family and friends all show up and all contribute to this amazing journey we call life. They make it possible to do all we do and to make a difference and that makes me very happy.

When I went to the hospital I wrote “I am happy to be here.” Now that I am out and home, I have much more to do.  Will I continue to exercise?  Will I continue to exercise my influence over this disease? Will I continue to participate and make decisions that result in my happiness regardless of circumstances?  That’s up to me. That’s my choice. That’s what I am choosing to do.

Support me in this year's MS Walk. Join our team and contribute to the JiggyWiggits by clicking here. You, and everyone affected by MS, will be glad you did.   

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I am happy to be here

Be where? Paris? Honolulu? No, in the hospital.
In fact, I have never been happier to be in the hospital than I am now. Why am I happy to be in the hospital? Because I am about to begin an estimated two weeks of physical rehabilitation.

Last year was a very challenging year for me physically. My ability to walk with a walker continued to lessen until I no longer could. The same is true with my ability to stand with a walker… and I am not ready to give those abilities up.

My rehab’ program will include several hours of exercise every day and what I will really be exercising is the influence I have over my body and this disease. I may not have control, but I do have influence and it is up to me to exercise it and I will.

Exercising our body, or our influence may be one of the most important things we can do for our health. It is also important to exercise our influence in other areas of our life as well including relationships, finances, careers and much more. We may not always have control but exercising our influence may be the difference between success and failure.

I can let my MS take over, but instead I have chosen rehabilitation as my way of exercising influence over the course of my disease. How do you exercise influences over the events and conditions of your life? I would like to know.

Linsday Lohan and Robert Downey, Jr. , Look out. I will be out of rehab’ soon and have no plans to ever go back again!
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Practically Famous

A few months ago I was contacted by an organization, Health Central, and asked if I  would be interested in doing some videos about MS for them….and so I did. They came to our house, filmed and I never heard from them again….but I did hear from my mother-in-law.

One day she was surfing the internet and there I was, talking about living with MS. I did a little research and found five short videos featuring ‘yours truly’. I decided not to give up my day job, but did want to share the links with all of you. Enjoy.

http://www.5min.com/Video/Attitude-and-Perspective-for-Better-Living-with-MS-500242114

http://www.5min.com/Video/Best-Exercises-for-Living-with-MS-516932385

http://www.5min.com/Video/How-to-Recognize-the-Early-Signs-of-MS-500251885

http://www.5min.com/Video/Adapting-Your-Home-to-Make-Life-Easier-When-You-Have-MS-485893499

http://www.5min.com/Video/Alternative-Treatments-for-Living-Well-with-MS-516932438

Wishing you all an extraordinary new year.

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Labor of Love

It happened on Christmas Day 28 years ago. It all began on the 22^nd. We thought it would happen on the 23^rd, but it didn’t. Then for sure it would happen on the 24^th, 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 24^th , 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 24^th.

Then on the morning of December 25^th, 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?

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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.

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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…..like 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.

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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.

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.

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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.

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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.