Welcome to the 5th Annual David Wilson Rollin’ & Rockin’ “Pass the Gift” Fundraiser. We are here to celebrate and enjoy family, friends, food, and fantastic music. Thanks to each and every one of you for making this a successful event for 5 years now.
I was diagnosed with ALS, Lou Gehrig’s Disease, in 2008. My body and quality of life have continually devolved into almost complete motor paralysis, a condition known as locked-in syndrome. My brain and senses remain unaffected but all of my voluntary muscle movements die. My only means of communication are with my eyes, and as scary as it is for you all, now my brain. The eye gaze software and the new BCI are not covered by insurance and the monies raised from this event help to cover the continual out of pocket medical expenses. This means so much to me since this is my only means of communication.
This year has been a special year in the media, and especially social media, for ALS. The Ice Bucket Challenge has made a significant difference in our world. I am very happy that more people know about ALS and its devastating affects on the body. Before this challenge, most people did not know of this disease unless they knew someone personally who was affected by it. Or, no one wanted to talk about it because of how it affects the body and yet not the mind. The awareness is amazing and the funds raised phenomenal. My hope is that this disease will be stopped in its tracks and paralyzed. Thank you to all who participated in the Ice Bucket Challenge in my honor and for those who participated in the Uptown Shelby Bucket Wave Challenge. I am truly blessed by your thoughts of me and my family. The social media attention has been incredible for me to watch. Facebook is my main connection to the outside world and I enjoy watching people stand up to ALS on my behalf, and of course, to laugh at you all for looking so pretty when doused with freezing cold water and your reactions to it.
Deciding to share the proceeds, or passing the gift, is my way of giving back and sharing my belief that being sick does not excuse us from participating in humanity. Losing the ability to walk, speak, or function without pain or weakness makes my world smaller. When a friend offers a hand, that world begins to expand, and when a lot of friends reach out, the world opens wide. The miracle is that by giving, we receive, and what better way than a big ole party with lots of fun and great music.
Since this is the 5th year, I would like to recognize those who have been beneficiaries of this event. Alan Biggerstaff, Hannah Conley, Tanner Deaton, Dana Hare, Gail Langston, Ashley McIntyre, Roger Padgett, and Bethany Preston’s family. This year we add Brian Dukes to the list. Last year we created the 1st Annual Alan Biggerstaff Local Musician Award. The recipients of this award also receive monies from this fundraiser. Last year we honored Art Mauney. This year we will honor Eddie Javan Cook. Eddie is a local guitarist and you will often finding him playing at Ni Fen Bistro. Eddie suffers from seizures and yet he still plays his beautiful music as often as he can.
The band Ponder has played every year at this event. Unfortunately, they will not be able to play this year as Tommy Adeimy, the guitarist has been in the hospital and had a cancerous mass removed. We are thinking of him, his family, and the band and sending prayers.
Because my world is limited, I needed help in choosing a recipient for this year’s event. I used Facebook to put out a call for nominations. In mid-March, my inbox exploded. The community overwhelmingly picked the Dukes family. Brian, Violet, and Scarlett Dukes to be exact. I began learning of Brian’s story of living with Gullian-Barre. Brian experienced in a matter of days what I experienced in a matter of years. He lost all motor function, was hooked to a ventilator, and was paralyzed. It was a new experience for me because he understood what I have experienced. The difference being that Brian can, and will, recover from this disease. The Dukes family visited with my family. We shared our experiences and it was interesting how similar they were. Who else could understand the concern of not being able to close your own eyelids?
I had a God given moment during our visit. I was able to have Scarlett held close to me. She is a very cute and very good baby. I was smitten with her. And as only a child could, she was not afraid of me or my ventilator. It was refreshing. Adults can sometimes be intimidated by what they see. It also brought back memories of my own girls when they were little…and sweet…boy was that a long time ago.
My communication is still hard. I use an eye gaze software and when it works, it works well. Sometimes it gets stuck and I spend lots of time recalibrating in order for the program to work with my eye movements. I have started with a new form of communicating called BCI, or Brain Computer Interface. BCI uses a computer and the EEG signals, or brain waves, recorded from the scalp to allow communication that does not depend on voluntary muscle control. Electrodes are connected to the scalp and behind the ears. The scalp electrodes are embedded in an electrode cap, which fits like a swim cap. An electrolyte solution is placed in the electrode which allows the electrical signals from the scalp to flow to each electrode. I am then presented with a sequence of visual stimuli and the task is to focus on them. I would like to share that to many of you and your dismay, at no time do I receive any type of electrical current, so don’t get any bright ideas. I would love to show you how it works sometime and my opening, and most frightening line for you is, “Welcome to my brain.” Oh, and I can also still tell my girls to “hush!” Haha!
I would like to thank everyone involved in this event: my family, my friends, the sponsors of all levels, the golfers and teams, those who made donations for the silent and live auction, the Cleveland Country Club, those who bought raffle tickets, and those of you here tonight. Now raise a glass, let’s say cheers, and let’s enjoy the fun. I am a grateful man and I hope you will continue to Pass the Gift.