Old Stories

Age is different than it used to be. When I was a kid and my grandfather was 65 years old, he was a little old man. Back then many companies had mandatory retirement at age 65. Today people in their 60’s are an active, vital part of the workforce. It was rare that you met someone who was in their 80's and today it is a common occurrence. More and more I meet people in their 90's and I love it. Especially when these "mature” members of our community are still active and vital and ALERT!

Over the years I have gathered a few stories about these “Super Seniors”. This blog is written to share a few of these stories with you.

Meet Uncle Sam and Uncle Larry

Uncle Sam and Uncle Larry were identical twins, always have been and as far as I know, always will be. Sam lived to be 94 years old. When he passed the doctor said that Harry will probably pass within 30 days and he did. This is not uncommon for identical twins. It is also great that they both lived so long.

The story about Uncle Sam

Uncle Sam was a happy man. Most days were started with a couple of Bloody Mary's followed by a visit to the putting green right outside his door. He was happy for several reasons. One is that his hearing was not so good. I often say that he was happy because he hadn't heard anything that anybody said for 20 years. (Maybe we could learn from that!) Everyone knew that he had a hearing aid because we could all hear the ringing noise that it made. That is, everyone could hear it, but Uncle Sam.

After my great, wonderful and beautiful Aunt Elaine, Sam's wife of many years, passed away he got a much younger girlfriend who was only in her 70's.

The story is that one morning Sam's grandson's wife called to check on him and the conversation went like this.

" Grandpa Sam, it's Jenny"

" Who Is it?"

" it's Jenny. Steve's wife, Jenny.”

" I can’t hear you and don't know who this is, but I can't talk right now. I have just taken a Viagra and my girlfriends coming over." CLICK

There goes a happy 94-year-old man.

The story about Uncle Larry

One day I was out with my family and we ran into Uncle Larry at a deli close to where he lived. We had just a short conversation and he said one of the greatest things I have ever heard.

"Uncle Larry, how are you feeling?”

"The closer I get to 100, the worse I feel."

If that is not the good news and the bad news all rolled into one, then I don't know what is. 

My friend's aunt

My best friend's aunt passed away recently at the age of 91. Her mother had passed 14 years earlier at the age of 100. 

The story is that when the aunt was only 77 years old and her mother was 100 years old, she was visiting and talking to her mother and at one point her mother interrupted and said this:

"What are you complaining about? You have got your whole life ahead of you!”

That is something that most 77-year-olds don't hear from their mothers.

The Old Testament and my 93 year old grandmother.

The Old Testament tells us that we are to live to be 120 years old. It is common among Jewish people that on birthdays our birthday wish is "you should live to be 120".

My grandmother lived to be 93 years old and her mind was sharp and quick up to the very end…. except for one thing. She could not remember the punchline to this one story……

Molly Picon, a well-known actress within the Yiddish theater (she also played Yente, the Matchmaker in Fiddler On The Roof) would always greet people the same way on their birthday by saying “you should live to be 121.”

Someone asked “Molly, most people say that you should live to be 120. Why do you say 121?”

She replied saying “So you shouldn't die suddenly.”

May we all lead long and healthy lives. May we all live to be 121!

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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.

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.

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

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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.

Excuses

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?

Comparisons

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.

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:
http://www.ampyra.com/consumer
http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm198463.htm
Or watch a video from the National MS Society at:
http://www.youtube.com/watch?v=8E7DUwkAQv4

Walk better. Then sign up to do one of the more than 600 MS Walks taking place from coast to coast. Bring a friend or join us. You, and your friend, will be glad you did.
Join Us At National MS Society - Walk Event:

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

Sense and Sensibility

When I talk about senses, I am not talking about sight, smell, touch, taste, etc. I am talking about something perhaps a little bigger. I am talking about those senses which give meaning to our lives. I am talking about having a sense of who we are in this world that we live in.

Sense of independence
When I gave up driving four years ago I worried that I would lose my sense of independence. I have not. What I have learned is that my independence is not dependent on my driving, ability to get my own meals or take care of all my daily needs. My independence is found in my thoughts, feelings, actions and words. Yes, my disability requires me to be more dependent on others than I ever dreamed of. But thankfully, that is not where my sense of independence comes from.

Sense of community
We all belong to something that is bigger than ourselves. But belonging is not enough. We must be participants too. Being a participant means that our goals are not driven by just what is good for ourselves. Instead we are driven by what is good for everyone.

Sense of humor
“I don’t think that I should use self-deprecating humor. But I think you should.”
We must first be able to laugh at ourselves. Then we can laugh with the world around us. Laughter leads to joy and joy is contagious. Be the source and cause of laughter. Life is too short to go without it.

Sense of wonder.
Marvel at the world around us. Be impressed by the beauty of life. Find majesty in sunsets and awe in the miracle of life being created. Be inspired by the power of the human spirit. Love the fact that you are alive and savor everything that life has to offer.

Sense of purpose
This can best be defined as the quality of having a definite purpose in life. Know why are you here and find the meaning your life has. Make a difference to someone or something and wake up everyday feeling great about the opportunity that each day offers.

We may lose our sense of taste or smell as we get older and that is okay. What we really want is to develop these other senses. After all, it may be the only truly sensible way to approach life.

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