May is ALS awareness month. ALS stands for amyotrophic lateral sclerosis, a disease for which there is no cure and for which there are no treatments.
Bobby Thietje and his partner Morgan Grounds recently paid a visit to Paul and Kathy Tavano. Bobby, diagnosed in 2011, and Paul, diagnosed in 2009, both have ALS.
"My first symptoms were muscle vacillations, quite extensive," Paul Tavano said.
As for Thietje, he said in words almost unintelligible, "I noticed I was slurring words with the letter R, so I would think of other words that didn't have an R."
They each sought out medical assistance as soon as they noticed symptoms, but diagnosing their symptoms as ALS was not a quick process and medical professionals try to first diagnose it as anything else.
"It's a diagnosis by exclusion," Grounds said, "because there is no test for ALS. It took us about a year."
Thietje said it was rough when he got the final verdict.
"The final test was a spinal tap and I went to the doctor’s office and he says it was negative, so that meant I have ALS," Thietje said.
Paul's wife Kathy said she found herself thinking things she never thought she would.
"You were praying it would be a disease, like cancer. Cancer, diseases like that, you have a chance. ALS, there is nothing you can do, you don't have a chance," Kathy Tavano said.
The disease progresses at different rates with different people, and even after the diagnosis, there is still a torturous wait for the patient and their family to try to determine how long they'll live.
For Paul Tavano, that wait for that news took another nine months.
"They monitor you and see what's happened over that period of time," he said.
Paul Tavano's progression has been slow. Thietje, diagnosed two years later, has had a very different experience. Thietje has trouble speaking and needs a brace to hold his head up. Breathing problems have started as well, but he is trying to keep a positive attitude.
"Everyone is going to die, but you don't know when. You can get in your car and boom. So, I live each day and appreciate what I have," Thietje said.
Meanwhile, the families of those diagnosed try to find ways to help their loved ones, such as the annual golf tournament the Tavanos hold every year to benefit ALS research.
"I can't do anything to change the disease for Paul, that is going to stop it or reverse it, but I can do something that may find a treatment or a cure. We want to change it for other people," Kathy Tavano said.
For more information on how you can help, head to http://www.wewillcureals.com/.
