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.

Saturday, December 14, 2013

It has been 10 years, but it seems like only yesterday.

 December 12 is an unusual anniversary date. An unusual anniversary because it was the 10th anniversary of the date that my mother passed away. In many ways it seems like it was only yesterday. And in 100 more ways it seems as though she is still here. She is still talked about and considered. “Mom would really like that person” or  “Mom would have loved that movie”. When I say that she was a big part of our lives, I do not mean just me. I also mean my wife, my children, my in-laws, my cousins and so many others who knew her and loved her.

 There are a lot of beliefs and theories about what happens to us after we are gone. But there is one form of “eternal life” that we can all agree on. The one way that we can live on after we are gone is to live in the hearts and minds of those who knew us best. That is certainly the case with my mother.

 Was she a little bit eccentric? Crazy? You bet and that is how and why she is so fondly remembered. We all have so many wonderful stories to tell about her. So many that it allows any negative thoughts to fade away and what we are left with are happy, joy filled memories. Who wouldn't want to be remembered that way? I don't think that while she was here with us she ever gave a thought to how she would be remembered. But her constant consideration of those that she loved and cared about most of all were certainly her hallmarks.

Maybe that is the answer. Perhaps if we want to be remembered by those who we love most of all, the best way to do that is by a constant consideration and caring for them. It certainly worked for her.

My father told me the story of having attended a funeral and afterwards he approached the woman whose father had died and said “I am sorry for your loss”. Her response was extraordinary. She said “I haven't lost anything. I have just stopped gaining.”

I can only hope to be remembered as fondly as my mother and in the same way this woman loved her father.

 ( After I wrote this I realize that I wrote a similar piece 2 years ago called “Lasagna in your trunk”. I hesitated to publish this and then thought that if I feel the same way, then I should publish it anyway. I hope that you agree.)

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

Wednesday, December 11, 2013

The Best New Year's Resolution Ever.

 That's a bold statement. But it is true and it will be my New Year's resolution again this year. "Resolve to do more”.  I wrote about this a few years ago and thought that it was appropriate to publish it again.

 I hope that you agree and that you will resolve to do more.  

This year, I resolve to do more.

I will love more.
I will laugh more.
I will sing more.
I will participate more and I will make more of a difference in the world around me.

Life is a journey. If we pay attention along the way, we find that it is also a great teacher. Below are some of the things I have learned on my journey:

We all have something.
I have learned that nothing holds us back except ourselves. I have learned that we either have results or excuses as to why not. I have learned that we all have the same amount of time, and that we all can participate more, and do more to make a difference in this world. Whether it is an hour a day, an hour a month or an hour a year, we can all do something to make this a better world.

We can all do more.
Doing more requires only one thing: making the decision to do more. I have decided to do more for the MS Society. I will also do more for my wife, my children and my friends. I will do more for the world around me.

Doing more means participating more. Showing up is a good start, but it is not enough. Participating means rolling your sleeves up and getting involved both figuratively and literally. It means asking questions and learning more. It means listening when a listener is needed and teaching or counseling when called for. It means helping out and contributing time and attention to someone or something. It means caring.

We can all make a difference.
We can only make a difference when we care. Whether it is family or friends, work or a cause - my favorites are the MS Society (
www.nmss.org ) and Chelsea’s Hope (www.chelseashope.org - Please visit this website). Find something that you care about and be a participant. If we participate, we can make a difference. When we make a difference, our lives have meaning and purpose.

Resolve to do more. That is my New Year’s Resolution. I may or may not lose weight, exercise more or save any money. What I will do is MORE…more of what is needed to make this world a better place. I hope that you will make that part of your list of resolutions too.

These are my New Year’s Resolutions and I am planning to have a great year.

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

Saturday, November 23, 2013

“MS Kills Connections. Connections Kill MS.”

This was the theme of this year’s National MS Society's Annual Leadership Conference held in Denver from November 7-9 and what an extraordinary conference it was. The general sessions were attended by 700 to 1,000 participants and greater than the number of attendees was the sense of hope, optimism and outlook for the future of the treatment of this disease.

We all know that “MS kills connections”. The disease causes short-circuits that prevent the brain from sending messages to the body. But how do “connections kill MS”? Very simple.  The more researchers we connect with to study this disease, the more progress we make towards developing better treatments and a cure. The more people we engage in our lobbying efforts, both individuals and lawmakers, the more funding we can get towards research and the better treatment we get for those affected by the disease. The more people become aware and educated about MS, the more money we can raise through our walks, bike rides, dinners, bake sales and any other means used to raise money to help fund our research and advocacy efforts. In other words, our “connections kill MS”.

Inspired? You bet I am. After attending this conference it would be impossible not to feel inspired. Many of the general sessions were spent recognizing those individuals who have made the biggest difference in the past year. The top researchers, the biggest fundraisers and most effective advocates were all recognized for their contribution to the progress that has been made over the past year.

Why was I there? For the 2nd year in a row I was asked to be the co-emcee of the event with Reyna Magpale as my partner.  (She is an amazing emcee and is ready to take over doing the evening news!)  Being asked to participate in this event was truly one of the greatest honors I have ever been asked to do.

I wish that everyone could attend this event because if they did, they would return home ready to do more. They would do more fundraising. They would ask more people to participate. They would be more involved with advocacy and talking to their lawmakers. I know that they would do more because I know that I will do more.

Doing more means making more of a difference. Making a difference means living a life that matters. Living our life in a way that matters is why we are here.

I am ready to do more and hope that you will join me at walk MS 2014 on Sunday, April 6 at the Rose Bowl in Pasadena. To register, donate and make a difference click here.
Participate. Make a difference. Live a life that matters.

Sunday, September 15, 2013

Another Extraordinary Human Being

 The world is filled with amazing people and when we meet or see someone who moves us, we want to share that experience with others. I just watched the video of this young woman and what is so inspiring about her is the way that she chooses to live her life despite her challenges.

 Grab a Kleenex and enjoy this video.

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

Wednesday, August 28, 2013

So little time and so much to read.

 If you are like me, living with MS can take a lot of time, especially if you want to stay current on what is happening in the MS world.

 Recently I was contacted by Cathy Chester, a well-known writer in the MS world, who offered to write a guest blog. She has done a great job of writing about the many resources that we have available. I do hope that you enjoy reading this.

Guest post provided by Healthline

It was easier to keep up with news and information about Multiple Sclerosis twenty-five years ago.  There was none.  There was no Internet, no FDA approved medications and no complementary medicines being recommended by physicians.

Today there is a plethora of information about approved medications, clinical trials, therapeutic modalities, assistive technology, emotional support, employment opportunities and financial assistance.

Now, more than ever, it’s important to stay current with information that suits your needs. 

But who has time to work, take care of your family, tend to your MS needs and stay current with the latest news?

Here is how I try to keep up without having to spend a lot of time combing the Internet to find answers to my questions.

My first piece of advice is this: sign up for alerts: As a writer, health advocate and MS patient, this simple technique is one I rely on every day.  I use Google as my email program (Gmail).  In their settings, there is an area that allows you to type a phrase (or a website, blog, online magazine, etc.) and then specify how often you’d like to receive an alert (daily, weekly, monthly). 

For example, I typed in the words “Multiple Sclerosis”.  Every day I receive alerts for news or blogs appearing on the Internet that contain the words “Multiple Sclerosis”. 

If you don’t use Gmail, and are unsure how to set up your own alert, do a Google search on setting up alerts for your specific email program.

I also do alerts for news and information from reputable websites that I’ve come to trust for reliable information:

·      Healthline
·      The National Multiple Sclerosis Society
·      Multiple Sclerosis Association of America
·      MultipleSclerosis.net
·      Multiple Sclerosis Foundation
·      Medline
·      Health Central
·      Carnival of MS Bloggers
·      MS Views and News
·      Consortium of Multiple Sclerosis Centers
·      CAN DO Multiple Sclerosis Center (formerly The Jimmie Heuga Center for MS)
·      Accelerated Cure Project
·      Myelin Repair Foundation
·      Disability.gov
·      ADA.gov
·      WebMD

I like to also keep up with complementary medicine, and how that can help me manage my MS in addition to the traditional medicine I follow.   Here are some sites I use:

·      Healthline
·      Dr. Andrew Weil
·      The Self-Healing Coach
·      Daily Yoga – My Yoga Online
·      Center for Mindfulness/Jon Kabat-Zinn
·      The Mayo Clinic
·      Psychology Today
·      Naturopathic Sleep Medicine Blog

This is a small sampling of what is available to keep you up-to-date on the news and information that matters to you.  Search for others.  Once you find something you like, set a bookmark, sign up for an alert or subscribe to them.

The Internet makes it easier for you to find answers to your MS questions, and to help you better manage your disease.  (Of course if you don’t own a computer, perhaps a visit to your local library will do the trick!)

Good luck and best of health.

About the Author: Cathy Chester is a writer for Healthline.  Diagnosed with MS in 1987, today her life is dedicated to two things: writing and paying it forward to others with MS.  Her blog, An Empowered Spirit, is dedicated to being healthy and vibrant over the age 50.  It is also to empower people with disabilities to live a joyful and healthy life.  She also writes for other health websites and is a blogger for The Huffington Post.  Her mantra is “Life is delicious, so seize each day by doing the best we can with the abilities we have.” 

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