Thursday, November 26, 2009

Today I am thankful

Happy Thanksgiving. I have a very long list of all that I am thankful for. This is just a part of it.

At the top of the list is my wife. She is everything to me. She gives me a life and love. She is my companion on this journey and being with her makes everything better.

Then there is my family. Our two great kids who are both good, smart, kind and a never ending source of joy. Then my siblings, which includes my brother with his huge heart and sister, who continues to become more extraordinary every day. Then my parents. My father, who is always teaching by his example and my deceased mother, the most amazing woman ever, who is still with me all of the time. My family also includes my mother and father-in-law whose support of and for us is endless. I can’t imagine our lives without them. That is my immediate family and I am thankful for each one of them.

Then there are my friends and what a wild and crazy bunch they are. Their commitment to us is constant, as is their companionship. There is not enough time to spend with all of them. But there is more fun, entertainment, support, encouragement and love than I ever could have hoped for.

Then there are my abilities which I do not take for granted.

I used to jog everyday. Now I can walk just a little and am very grateful for that ability and all of my abilities which are many. I can see, hear and listen. I can feel and care. I can think and reason. I can speak and communicate. I can make choices about my life everyday, wake up happy and grateful, make each day good for me and others, make a difference to someone or something or not.

These are some of the things I can do everyday and for all of them, I am grateful…..and thankful.

Our world is filled with millions of people who are struggling, starving, at war, abused, lost their jobs, homes, faith or hope. I do feel for all of them and yet, am thankful that I am not among them.

Today is Thanksgiving and today there is much that I am thankful for. I hope that you are feeling very thankful today too.

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

Friday, November 20, 2009

Are we having fun yet?

The real question is, if we are not having fun, why not? Fun is a choice, a perspective and an attitude towards life. So if you are not having fun, it may be time to ask yourself why not?

Life’s challenges and circumstances provide all the fodder any of us need to have fun. Being able to laugh (especially at ourselves) and have fun make having to deal with our challenges all the more do-able and bearable.

In our house we like to play a game that I call “Fun With Hearing Loss.” My hearing is just not as good as it used to be and there is no telling what I am going to hear. In fact, what I hear sometimes is pretty funny stuff. Our MS Walk Team is called the “JiggyWiggits” and the name comes from my constantly singing the WRONG lyrics to a song a like. Can you guess the song?

When I am out and about in my wheelchair, especially at hospitals or airports, I have made a habit out of pulling my chair up next to someone “older” than me that is also in a wheelchair and asking “Are you here for the races?” The response is almost always the same. First they are startled by the question and then they laugh. The wheelchair allows me to spread a little good cheer that I could not have done otherwise.

My doctor never knows what to expect from me. Not long ago he wanted to check my coordination. He sat in front of me on his little round stool (doesn’t it seem like every doctor has one of these?) with his hands on his knees and said “Go like this”, He then flipped his hands over repeatedly and quickly. So I did exactly as he did. I reached over, put my hands on his knees and began flipping them back and forth. The look on his face was priceless. I am sure that no patient had ever done that before. A memory I am not soon to forget, all because I was willing to have fun.

I am not the only one who thinks that having fun is a good idea. Even Listerene has gotten into the act and created a mouthwash for children. Where there is plaque on the children’s teeth, the teeth turn blue (Only temporarily! It’s easy to rinse.) The blue encourages kids to do a better job of brushing and that can’t be a bad thing.

The fact is that having fun and making things fun can and does make the world a better place. It makes people laugh, brings smiles to faces and can break up the monotony or tensions of an otherwise mundane activities or ordinary day.

Recently I received an e-mail which directed me to a website hosted by Volkswagon at On the site it reads “This site is dedicated to the thought that something as simple as fun is the easiest way to change people’s behaviour for the better. “ Wow! What a concept! I was blown away by that idea.

Spend a few minutes on the website and you will discover some of the fun ideas they have implemented to get people to take the stairs instead of escalators, throw away trash and recycle. It is brilliant clever and wonderful.

What is also wonderful is that they are looking for more ideas and having a contest and the entry deadline is December 15th. Do you have an idea that could change people’s behavior and make the world a better place? If you do, I hope you will take the time to visit the website, enter the contest and help us all to have more fun.

Hmmm……..Having fun when and where it is not expected? Changing people’s behavior for the better? That sounds like a choice we could all make.

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

Saturday, November 14, 2009

The Lesser of Two Evils

This blog was written with the help and editing skills of my good friend, Vicki Bridges.

Life does not always give us perfect choices. If it did, decision making would be easy. All too often the decision to choose one thing means choosing to not have something else. And then, of course, there is the risk involved with any decision, even the ones that seem good for us.

For instance, have you ever watched and listened to a television commercial for a pharmaceutical drug? They are funny and scary at the same time. If you listen to the lightning speed disclaimer at the end, you have to ask yourself "Why would anybody want to take this?"

"May cause nausea, vomiting or dizziness."

"May cause liver or kidney failure."

"May cause stroke or heart attack."

"People who are pregnant, smoke, breathe, have a pulse or who want to live should not take this drug!"

The fact is that virtually every medicine we take to combat a disease or condition has a side effect. The question is, how do we decide? Some decisions are easier than others. Sometimes it comes down to choosing the lesser of two evils.

Recently I had to make one of these decisions. I have multiple sclerosis which is a currently incurable disease that effects the central nervous system, but some of the many symptoms can be managed or eliminated. One of my symptoms can best be described as electrical shock activity in the body, sometimes annoying and sometimes downright painful.

My doctor suggested I try Trileptal to reduce the neuropathic pain and it worked. The problem was it also gave me a side effect: fevers.

Fevers? That doesn't sound so bad. Take two aspirin and call me in the morning. But this is MS and it is not that easy.

Many of us with MS are sensitive to heat and this includes fevers. Though the pain went away, my energy was sapped away by the fevers and I could barely move, barely walk (with a walker) or even get out of bed. For me, that was an easy decision to make. I could readily live with the MS evil of recurring pains better than I could with the side effect of constant, extreme weakness. But not all decisions are so easy.

In the MS world, there is a newer disease-modifying "miracle drug" called Tysabri. It has improved function and quality of life for tens of thousands of people with MS. But it does have many side effects including: severe brain damage (PML), liver damage, and death. The side effect (called PML) has only affected about 23 people out of more than 40,000 who are currently using this treatment. Technically, I suppose that there is a very low risk of being "adversely affected," but I could be number 24. So for me, that side effect is too great a risk to take.

How do we make the difficult decisions about which drugs or treatments to take?

Below are my considerations when making these decisions. It is not an all inclusive list, but if it helps anyone, I am glad that I wrote it.

Have a doctor you trust.

Talk to your doctor and insist that he/she explains things so that you understand.

Are the side effects worse than the condition?

What is the benefit to be realized?

What is the risk and are you willing to accept that?

What is the risk of not taking the drug?

I would love to hear about your experiences and suggestions too. Perhaps together we can develop an all inclusive list.

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

Thursday, November 5, 2009

What can I give you today?

Today is my 52nd birthday and I do not have a gift picked out yet for all of you.

You may recall that last year at this time I published a blog about my birthday philosophy (Click Here). That is that my birthday is a time for me to celebrate those who are closest to me and those who make a difference in my life. This includes family and friends, and it includes all those who read, comment and inspire me through my blog. To me, that means that some of you deserve gifts, some acknowledgements and others need to know and trust that you really do matter to me.

I don’t drive, so I did not go shopping. Besides, money has been very tight this year and I can’t afford to buy all the gifts that my friends and family deserve……and they are very deserving. So what can I give them instead? What can I do to express my gratitude and affection for those who matter most to me?

One of the things that I think I do best is having relationships with people. I care. I communicate. I listen. I support. I truly want the best for the people I love most and I think they know that.```````````

So my gift this year is to do the same…….more of the same. I will continue to care and listen. I will continue to offer you my perspectives on life and I (we) will continue to keep our doors open for those seeking respite, companionship, laughs and friendship.

Yes, there are many things that I cannot do physically or fiscally. But what I can do and give is more of the same.

Hmmm………More of the same is my gift to you? I think I have just figured out what to give myself.

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