Todd Galli. Gone, but Not Forgotten 1976-2012

A year ago today, my friend, Todd Galli died peacefully in his sleep. Like me, Todd had Duchenne muscular dystrophy and used a ventilator. He may have only lived thirty-six years, but his was a full life. His disability did not keep him from enjoying life to the fullest. If he wanted to do something he would make it possible. To him obstacles were there to be overcome, not to keep him down. He was determined not to miss out on life. Years ago he made a list of things he was going to accomplish. A month or so before his death he had completed his list.

There were many items on his list. One item was his desire to climb a mountain. For a person in his condition, this was an audacious plan. Todd was undaunted. He raised the funds, recruited volunteers, and had a special chair made so he could be carried up the mountain. Once everything was arranged he was able to climb a 10,000 foot mountain in the Sierra Nevadas. Another was his desire to go sailing. With the help of a local charity, he was able, through the help of adaptive controls to control a small sailboat.

His most important items on the list were getting married, and being a father. He met his wife, Molly on an internet dating site, and it was a great match. They were together for ten years, and married for eight of those years. They were made for each other. The two of them became a family with the adoption of Mary Grace. Todd was so happy to be a husband and father. He showed a deep love for his wife and daughter, and always had their best interests at heart.

Though I only knew Todd about five years, his life has had an influence upon me. I strive to do more with my life, and to not give up on my dreams. He was always encouraging me to go for it. I may fall short at times, but I still make the effort.

Jason Hinkle

I have a friend, Jason Hinkle, who is an aspiring documentary filmmaker. He has Friedrich's Ataxia, but this has not stopped him from pursuing his dreams or from enjoying life. He doesn't let his disability get him down. If disabled people are looking for a role model, Jason is it. He has made two short movies which can be viewed on his MySpace page at www.myspace.com/jrhink .

Lianne Harding 1963-2007

Today I attended a memorial for a good friend. Lianne Harding was a regular at the Muscular Dystrophy adult support group that I attend quite regularly. Her form of MD,took quite a toll on her body. She had hearing loss, a pacemaker to assist her weakened heart, couldn't walk without difficulty , and had a whisper of a voice.Yet, she was able to keep on going and enjoying her life. She may have been frail in body, yet she was strong in spirit. Her concern for others was wonderful as well as her kind heart. She was concerned with how I was doing, especially when I was so seriously ill last year. Her kind e-mails always made my day and brought smiles to my face. Iwas inspired by her. It was privelege to have known her and she will be missed.

Her husband of 17 years, Bill truly loved her and strove to bring happiness and enjoyment to her life. He stood steadfastly by his wife's side. He always looked out for her. When he was on active duty in the Navy, he always made sure Lianne would be well-looked after when he was out on deployment. He should be commended for the dedication to his wife. Many men might find it hard to deal with a wife's progressive disability, but not Bill. He never gave up on Lianne.

On-line Monopoly

Today I played Monopoly with a couple of friends--Alan and Jeff--over the internet. It is a lot of fun, especially since we converse during the game using the Skype internet phone. There are many laughs, and friendly competition--with a few barbs of the joking kind thrown in.

The internet has really opened up the world for people with disabilities. It allows me to meet new people all over the world and to communicate with them. If not for the internet, I would not have found the DMD Pioneers internet group, where I have found much support, and given support to others living with Duchenne Muscular Dystrophy and their loved ones--parents, wives, girlfriends, friends, siblings. We are a group that does not give up, and goes boldly forward like a group of pioneers. It is great to be able to talk to people with similar issues, complaints, concerns, and experiences as me. I no longer feel alone in this world. I am part of an international community. There are members from all over the U.S. (Alan is from Pennsylvania, Jeff is from Kansas), Canada, Europe, Australia, and Asia. This is all thanks to Jeff McAllister(1977-2005)--the founder, and a moderator. We lost him last year to heart failure at the age of 28. He is still missed. But, others have taken over the mantle to keep the group alive in Jeff McAllister's memory.

I also am part of the the Vent Support Network, an internet group founded by Mark Boatman of North Dakota for all ventilator users and their loved ones. It is yet another great source of support and information. Happily, Mark is still with us at the age of 30. Mark has been forced to live in a nursing home in Jamestown, North Dakota for the last three years, but the good news is that he will be gaining his freedom next month after much persistance. He is moving to Missoula, Montana where he will receive in-home nursing care and not be confined to an institution. I celebrate his coming independence.

Joe Malone 1969-2006

It has been about two months since my good friend, Joe Malone died. Though, we were only friends for less than a year, his death hit me hard. Joe, was 36, and like me, had Duchenne Muscular Dystrophy, was trached, and used a ventilator to help him breathe. He was a free-thinker, a non-conformist, and had an open mind about many things, much like me. I was able to have intelligent conversations with him on many subjects. We both shared a constant drive to learn. He was also a lover of animals and nature, as I am. I looked forward to our continuing friendship.

This all ended very suddenly on a January night in his apartment in the Point Loma area of San Diego. His death had nothing to do with Duchenne Muscular Dystrophy, but human error. As he backed up his power wheelchair, on his way to use his computer, he hit something which disconnected his breathing tubes from his vent on the back of his chair. He could only be off his vent for a minute or so. The nurse on duty at the time reconnected the main tube to the vent, but one of the smaller tubes was still disconnected, and she failed to find it. She called the nursing agency and they called 911. His roommates tried to get air to his lungs, but were unsucessfull. When the paramedics arrived, they were unable to revive him. He died the next morning at the UCSD Medical Center in San Diego.

I found out about his death when I logged on to Yahoo!Instant Messenger to chat with him, which we did quite often. The night before, I was unable to reach him; because he was in distress at the time. I typed a greeting to him, and was shocked to get a response from one of his roommates. She informed me that Joe had died that morning. I went cold and I had a sinking feeling in my gut. Seeing the words, "Joe Died" hit me like a ton of bricks. I was angry that my good friend had been snatched away, but then I realized this is the reality of DMD. But when I found out that human error, and not DMD killed him, the loss was even harder to deal with. But, for one little tube, he would still be here today. It was a tragic accident for Joe, his family, his roommates, and the nurse whose inability to reconnect his vent tubing led to his death.

Joe lived for today and made the most of his life. A favorite quote of Joe's was by Joan Baez who said " You don't get to choose how you're going to die. Or when. You can only decide how you're going to live. Now."