How to be beautiful

One of my favorite greeting cards reads "For your birthday I was going to get you a day of beauty for $175. But all I could afford was a day of relatively attractive for $35."

Just a couple of weeks ago I went to the movies with my wife and my travel companion, my wheel chair. While there a woman approached me and much to my surprise said "You're beautiful. Oh my God, you are beautiful" and then began to awkwardly apologize. She went on to explain that she wasn't used to seeing attractive people in a wheelchair, but I think she was saying much more than that.

I am not beautiful. There are no beauty pageants in my future. No one has ever come up to me and said that before. What she was really confessing was that her image of a person in a wheelchair was of someone 'unattractive'. That a wheelchair somehow suggested a deformity or disfigurement and thankfully, I don't have either of those. What I do have, and many of us with disabilities have, is to have combat those expectations of being unattractive, deformed, mentally incompetent (STUPID), hard of hearing or somehow less than ``the more able bodied occupants of our planet'.

So let me tell you what I do. I smile at people and say hello. I start conversations with strangers. I make it a point to be seen as the happy guy in the wheelchair….whether at the movies, the grocery store, the doctors office or the airport. Some of the places we go to regularly know me for that and if I have somehow changed their expectations of a guy in a wheelchair, than the world is a nicer place and we are all better off.

Do smiling, saying hello and being friendly make someone more attractive? I think so and apparently the woman at the movie theater thought so too.

Whether in a wheelchair or not, become known as the happy guy. Change people's expectations of how people are and how you are. Smile, say hello, ask a stranger "how are you today" and see what happens.

My guess is that before too long, someone will tell that you are beautiful

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

Ten things to learn from Japan

I received this e-mail the other day and thought it was worth sharing. I hope you think so too.

1. *THE CALM*

Not a single visual of chest-beating or wild grief. Sorrow itself has
been elevated.


2. *THE DIGNITY*

Disciplined queues for water and groceries. Not a rough word or a crude
gesture. Their patience is admirable and praiseworthy.


3. *THE ABILITY*

The incredible architects, for instance. Buildings swayed but didn't fall.


4. *THE GRACE (Selflessness) *

People bought only what they needed for the present, so everybody could
get something.


5. *THE ORDER*

No looting in shops. No honking and no overtaking on the roads. Just
understanding.


6. *THE SACRIFICE*

Fifty workers stayed back to pump sea water in the N-reactors. How will
they ever be repaid?


7. *THE TENDERNESS*

Restaurants cut prices. An unguarded ATM is left alone. The strong cared
for the weak.


8. *THE TRAINING*

The old and the children, everyone knew exactly what to do. And they did
just that.


9. *THE MEDIA*

They showed magnificent restraint in the bulletins. No silly reporters.
Only calm reportage. Most of all - NO POLITICIANS TRYING TO GET CHEAP
MILEAGE.

10. *THE CONSCIENCE*

When the power went off in a store, people put things back on the
shelves and left quietly.

With their country in the midst of a colossal disaster - The world can learn much from the citizens of Japan.

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The power of the internet to do good. More about Chelsea's Hope

I wrote a blog about 18 months ago called "What if it was your child?' It is about my niece, Chelsea who has an extremely rare and always fatal condition called Lafora Disease.

It is so rare that there are only a couple hundred known cases worldwide. There is also no treatment and no cure. Here is what we know about Lafora today:

Kids are typically diagnosed in their early teens

The mental and physical deterioration occur rapidly

No one with Lafora has lived to be 30 years old

Life expectancy is usually about ten years from the date of diagnosis. Chelsea was diagnosed almost six years ago.

What does all this have to do with the internet? Plenty.

Increased awareness means increased funding for research and treatment. Chelsea, or rather Chelsea's Hope, a non-profit organization founded by  her incredible parents is now in the final round of a contest sponsored by Toyota. 

If we win, a car will be decorated and dedicated to Chelsea's Hope. To win we need votes which you can do every day until May 1st. We need your vote.  We need your friends to vote. We need you to go onto Facebook or MySpace or Linked In or whatever social  network you belong to and help us generate as many votes as you can. That is the power of the internet to do good in the world. But if we do nothing, nothing will happen.

Voting is simple. Just CLICK HERE.

To learn more about Chelsea's Hope, CLICK HERE.

To make a difference I the world, TELL A FRIEND.

That is the power of he internet to do good in the world. I hope you will help us to do that.

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

What do bingo, drag queens and MS have in common?

Plenty…..especially if your bingo is hosted by a well known drag queen named Belle Aire and all the profits go the National MS Society. 

Tonight was our night and we (The JiggyWiggits) hosted our first fundraiser of the year and it was a hit. We netted just over $3,000, all for a great cause and all for a great organization. It was fun, entertaining (and how!), inexpensive and we gave away dozens of great prizes that were all donated by friends, friends of friends and businesses that we frequent. We kept it simple, low cost and I am sure that we will do it again next year and the next year and the next.

I am telling you this because I am very proud of what we have done. My wife and daughter took the lead on this event and made it all happen. It was definitely something different. More importantly it was something.

The key to fundraising is to do something. Girl Scouts sell cookies. Students sell chocolate bars. Churches have yard sales. Even neighborhood kids set up lemonade stands. If you want to raise money you have to do something.

The National MS Society gives people opportunities throughout the year to participate, raise money and make a difference. Then there are scores of people who do their own events be it concerts, tennis tournaments or bake sales.

The question for us is always what else can we do? Your question is what can you do, or better yet what will you do?

I recently read about a man who since 1999 has raised over one million dollars for the Society (Momentum Magazine - Winter 2010: “The Gillespie Whirlwind”). He has MS Walk teams in eight states, does a big wine tasting event and has enrolled the help of many others to achieve these results. I know that I can do more and he is my inspiration.

Bake sale? Carwash? Or just drag queen bingo? That is up to me. What will you do? I would love to know.

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

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.   

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

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

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.

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

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?

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

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.

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.

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