My name is Ernie Worth. I am a 38-year-old husband, a father of three, and an ALS patient.
For months leading up to my diagnosis last fall, I had been experiencing speech difficulties. For me, this was very strange, as I have always enjoyed giving presentations, public speaking, and the like. It started out subtly, and gradually got worse as time went by. I was also rapidly losing weight, and since I have always been very physically fit and health-conscious, the physical change was quite obvious and disturbing.
After months of going to many doctors and specialists, in September of 2014 I got the horrific news that my diagnosis was Amyotrophic Lateral Sclerosis, commonly known as ALS. My family and I were absolutely distraught, with lots of questions and not many answers. This was just after the Ice Bucket Challenge, so we had a rough idea of what ALS was, including the fact that it is progressive, terminal, and that there is currently no treatment that would sustain a patient long-term.
Fortunately, we were able to link up with the the ALS Association of Texas. They connected us to a network of resources, doctors, other patients, support groups, and information that would all prove to be invaluable over the coming months.
Now, here I am almost a year later and I have progressive difficulty speaking and pronouncing words. An innate ability that we learn at a very young age has now become a wedge for me when dealing with other people. Something as simple as ordering a meal at a drive-through window, or telling your family you love them, has become both difficult and frustrating. I also experience trouble swallowing, so even just taking a drink of water can turn into a choking fit for minutes. My muscles twitch violently all over my body all day and night, making me very tired and lethargic just going through a daily routine. Things that are at the very basic level have now become a challenge; things that I had always taken for granted.
Joining the Fight
When I was diagnosed, my family and I had to find purpose from our pain. We declared that we would fight the disease, and get involved at every level possible to overcome what was an entirely overwhelming circumstance. Whether a cure came in time for me or not, we would do our very best to advance the cause to find a cure. We have been involved in walks; sold t-shirts to increase awareness; helped the ALS Association at various levels; gone to Washington, D.C. to talk with members of Congress; and now I am both a patient and also a member of the board of directors for the Texas Chapter.
The thing I most want people to know about ALS patients is that we are hopeful. We are people just like everyone else, with a desire to live long lives and make memories with our families and friends. We are a group of people that despite overwhelming circumstances have the resolve to move forward and the will to make a difference.
To me, the Ice Bucket Challenge is more than a fundraiser; it is also a great tool for awareness. The more people that rally behind us, the better chance WE have to find a cure. ALS is a non-discriminatory disease that can affect anyone you know, anyone you love, and even you. Two years ago, I would have never imagined sitting here writing this blog, yet here I am. We have to find a cure for ALS, before we lose more good people.