Friday, July 4, 2014

I celebrate my independence on Independence Day

I wrote this blog a few years ago and since it is Independence  Day, I thought that I would update it and repost it. I hope you enjoy it.


 I stopped driving about 10 years ago and was very concerned that I would feel a loss of independence. But I didn't. I stopped walking almost 4 years ago and thought that I was done and there would be no chance for independence. But that didn't happen. Why is that? I think that it is because my mind is free to think and my heart is free to feel.

 Yes, I do need help and am dependent on others for assistance, but that is not how I define independence. My feelings of independence really do come from what I think and feel, from my relationships and from my activities. Sure, my  activities outside of the house are limited. Having a computer gives me the opportunity to have unlimited activities online.

 Does needing help make me feel dependent? To some extent, yes. But the truth is that everyone needs help. My needs may be more visible than the next guy, but so what. The seemingly physically healthy person may have more mental and emotional issues than I do and I would rather have my physical challenges than those any day. (well, at least most of the time)

 We all need help in other ways too. We all need doctors, accountants and mechanics. We may need electricians and plumbers. We need teachers and preachers. We need clothes, jobs and roofs over our head. In other words, everybody needs help And knowing that allows me to feel a little better about the help that I need. I also feel pretty good about the mental and emotional freedoms that I enjoy every day.

 Let's celebrate our independence on the 4th of July and everyday.


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

Sunday, June 15, 2014

My favorite nameTo be called is "Dad".

 Over the years I have been called many names. Mister, boss, buddy, sweetheart and a host of more colorful names that I won't bother to mention. But without a doubt, my favorite name to be called is "Dad". For me, being a father or "dad" is the greatest privilege that I have ever enjoyed.   

 I have two great children, now ages 31 and 30 (can I still call them children?) and they have given me more joy, pride and happiness than I ever could have dreamed of. I distinctly remember the day that my daughter was born, she is the older of the two, and feeling as though my world had changed. I felt as though a whole new instinct had taken over and suddenly I knew how to love in a way that I had never dreamed of. Over the years I have continued to tell people, especially friends and close friends of my children who were pregnant, that you may love your husband or wife, you may love your parents, and you may love someone else who is very important and close to you. But the love that you have for a child, for your own flesh and blood, is completely different. You made them and that creates a bond that is different than any other in life.

 In the beginning we spent a lot of time cuddling, holding them and feeding them. As they grew, our activities changed. We added peekaboo, tickling, playing with toys and rolling balls. Then, before we knew it, they were in preschool, kindergarten and elementary school. In fact, for many years I said that my favorite years were when they were 2 to 5 years old. It seemed as though every day they were adding new words to their vocabulary. They were still so wide eyed and innocent and honest and every experience was new to them.

 As they grew, they became involved in more activities. Dance classes, Little League, shows at school and so much more. They began to socialize more and develop relationships and they made good choices about who they would be friends with. In high school they both became involved with theater and music (Hmmm..... I wonder who they got that from?) and every single performance was an opportunity to fill our chests with pride.

Today they are grown. I love seeing them and watching what their lives are becoming and who they are becoming. They have both moved away for school and even further away during college to study in London and Washington DC and they did it quite successfully.  Our daughter came home and has stayed. Our son moved to Washington DC where he lived for several years and found the love of his life, married her and now we have a "new daughter" and together they live in Austin, Texas. But we are confident that when they are ready to start a family, they will move closer to us.

I know that not everyone has had the same experience as we have. Good kids can come from terrible parents and terrible parents can produce great kids. I believe that having good kids is a combination of parenting and luck of the draw. We have been very lucky.

Among their very first words was the word "da da" which eventually evolved into “dad” and they still call me that 30 years later. Of all the names that I have ever been call "dad" is still my favorite.

Father's Day is the day that I can celebrate being a father. I can thank my two great kids, and their incredible mom for that.


I do hope that all of the dads out there feel the same way I do and have a very happy Father's Day.

Tuesday, March 11, 2014

Last week was MS Awareness Week and I missed it…but not really.

For me, I am very aware of MS every day, every week. every month and every year. That is because I live with MS and it is has had a great impact on my life and the lives of my family and friends.

The challenge of MS Awareness Week is to raise awareness. Well, we did that last week and will be doing it again this week and next week and for the next few weeks. That is because we are raising money for Walk MS 2014 and our team, the JiggyWiggits. All the money raised goes to the National MS Society who funds more programs, services and research than any other organization. With their help, and with your help, we will find a cure for a disease that affects almost 2,500,000 people around the world.

We do a lot of things to raise awareness about MS. I run a support group, write a blog and usually post those blogs on Facebook, and more.   We attend MS events (and are sometimes asked to speak), go to educational seminars, make comments on MS related blogs and read a whole hell of a lot on the subject to stay informed and to know what is happening in the MS world and community.

That is what a person living with MS needs to do in order to feel as though they have some influence over the course of their disease…. or I should say that is what I do so that I can feel that way.  

Become a participant or supporter of our team at Walk MS 2014. Do the Walk with us or make a contribution that will make a difference for years to come.


To learn more, join our team or make a donation click here. Increase your awareness of MS for a lifetime.

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

Wednesday, March 5, 2014

An unusual anniversary.

There are a lot of different kinds of anniversaries. There are wedding anniversaries, birthdays anniversaries, the anniversary of the passing of a loved one, and on and on.

The date of March 5th is the anniversary of my diagnosis with MS. It is the date that my life, and the life of my family and many of our friends was forever changed.  Although some of the changes have been quite dramatic, they are not all bad. In fact many of the changes have been quite positive and that makes it an anniversary worth celebrating.

Occasionally we will hear about someone who contracts a disease or has an incident which forever changes their lives and their response will be “that their lives today are much better because of what happened to them”.

Many years ago Kirk Douglas had a stroke and then wrote a book called “Stroke Of Luck”.  After his accident Christopher Reeves wrote a book titled “Nothing Is Impossible” and Michael J. Fox's first book was titled “Lucky Man”. All of them suggest that the events in their lives forever changed their perspectives for good.

There is the man with no arms or legs who paints by attaching a brush to a holder attached to his head and he feels lucky. There are children who are dying who feel extremely grateful for all of the privileges that they have enjoyed in their short lives. There are poor people living in the worst of conditions who feel extremely fortunate to be living how and where they are. They feel as rich as kings because they have their health and family surrounding them.

There are scores of speakers who are using their choices about how they live with their disabilities to inspire others to live their lives to the fullest. One of my favorite quotes is from a gentleman who lives with cerebral palsy who challenges his audiences by asking “I know what's wrong with me. What's wrong with you?”.

What I have learned is that living with a disability, or with whatever challenges come our way, is an opportunity for us to make choices. We can choose to be grateful for all that we do have or we can focus on what we do not or no longer have.

The people I mentioned all made positive choices. That is why they inspire us. Ordinary people who make positive choices also inspire us by their decision to be grateful, to feel lucky and inspired about the opportunities available to them with every life experience.

Today is my 13th anniversary. Today I feel grateful for what I have learned from living with a disability. It has truly been an opportunity.

Today I make a difference in the world by being active with the National MS Society and raising money to find a cure. You can make a difference too by clicking here and supporting us and joining us. It would be the best anniversary present that you could give me.

Click here to join the team or donate now. Thank you!

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

Sunday, February 16, 2014

Fears, anxiety and … action!

This is a guest post and it is written by my friend Dan Dignann, who has been living with MS for some time and always maintains a great attitude and perspective. I hope you enjoy what he wrote. I certainly did.

Fears, anxiety and … action!

I don’t know about you, but I never asked if I could be diagnosed with Multiple Sclerosis  .                                  

It was like my doctor had mysteriously turned into a street thug and sucker punched me, leaving a mark that seemingly is going to last a lifetime. I never saw it coming.

Blindsided, the grief-stricken thoughts swirled around my head: “What do you mean, ‘I have MS?’” “What the heck am I going to do?” “But I didn’t do anything.” “This is so unfair.”

Would you believe that a line from the Hollywood movie “Tombstone” actually inspired me to move forward?

I always have loved this movie about Wyatt Earp starring Kurt Russell, Val Kilmer, Sam Elliot and Bill Paxton. In case you haven’t seen this 1993 film, according to IMDb it is about, “A successful lawman’s plans to retire anonymously in Tombstone, Arizona, are disrupted by the kind of outlaws he was famous for eliminating.”

The line that inspired me comes from a scene early in the movie when Wyatt Earp, played by Kurt Russell, gets in a standoff with Johnny Tyler, a local bully of sorts played by Billy Bob Thornton. Earp smacks Tyler several times, and with each smack Tyler comes back with empty verbal threats of retaliation.

Earp calls Tyler’s bluff: “Are you gonna do something? Or just stand there and bleed?”

For as much as I cried and for as angry as I got following my diagnosis, I realized that I either could wallow in my fears and idly let the disease control me, or I could transform my fears into taking action.

Remembering this line from “Tombstone” I called my own bluff and took control of my life with MS.

I started by learning as much as I could about the disease, taking better care of myself through diet and exercise and investigating possible treatment options.

Taking such actions gave ME the agency in this newfound relationship with MS.

Did any of the more than 2.1 million people worldwide ask to be diagnosed with this chronic disease of the central nervous system? Um, I doubt it.

But how empowering it is to realize that there is so much that we all still can control. It all starts with attitude. And in the 14 years since I was diagnosed, I’ve realized I am the one who determines whether I let the wicked disease or my positive attitude have the starring role.

So, who are you casting as the lead in your life with MS?

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

Saturday, February 1, 2014

Gone, but certainly not forgotten. My “Internet friend”, Vicki

  If the Internet is so impersonal, then why do I care so much.

 I call her my friend. I never met her and only spoke to her on the phone a few times. But when her life partner e-mailed me to tell me that she had passed away, I realize that I cared about her more than I thought.

 Vicki was an extraordinary lady. She was a writer and made a great contribution to the MS community by writing scores of articles for MS Central (HealthCentral.com) and through her own blog. She also took the time to read other blogs and to comment on them. She certainly did make comments on my blog and I made a number of comments on her blogs and articles as well.

 The comments are great and through these comments, which became conversations, we established a relationship. What I remember most of all is her kindness. That is the one word that I keep thinking of when I think about her. As I think about it, what a great way to be remembered. I can only hope to be remembered the same way.

 When her partner called me I immediately shared a story with him that certainly applies to her. Below is that story.

 “My father told me a story several years ago. He had gone to a funeral and after the service approached the woman whose father had died. He said, "I am sorry for your loss". Her response was "I haven't lost anything. Everything that I ever got from him I still have. I just stopped gaining."

That is how I feel about losing my Internet friend. I can only hope that people will feel the same way about me when my time here is over.


 Goodbye Vicki. You are missed by me and I am certain that you will be missed by everyone who knew you. We have all “stopped gaining”.

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