On June 20th 2012, Ted Haakonson's life turned on a dime. It was the day he would start to call his "New Normal." Ted loved to use his hands to woodwork. He had built sofa tables, chairs, stools, spoons and much more. It was because of woodworking he first noticed a strain in his right thumb. But he dismissed it as probably arthritis or carpal tunnel. After the diagnosis, he started looking back at all the signs that you don't think much of at the time. He began to put together the pieces of what turned out to be ALS.
Ted's love of woodworking lead him to develop tools to cope and ultimately give him hope during his fight for ALS. The first tool came right after his diagnosis because he felt so helpless and that helplessness turned to hopelessness. He realized very quickly that you can't live without hope. So he and his wife, Jaci, started "talking about it." They would talk about the disease and what's next. They would talk to their family; they would talk so anyone who would listen could get a better understanding of ALS. He even talked to a class of nursing students who wanted to hear about his journey and ask questions about the disease.
The second tool Ted developed to cope with ALS was to try to continue doing the things he loves to do, while he's still able to do them. When that is no longer possible, Ted says, "We adapt. We do that as quickly as we can so we don't waste time thinking about what ALS takes from us. I keep a very positive attitude. I don't want to waste a moment."
Ted's third tool to cope and hope during his battle with ALS is the determination "to do something!" Ted is determined to stay active and do anything he can to help. That's why he and his wife started researching clinical trials. In late May, (less than a year after his initial diagnosis), he had his own stem cells injected into his spinal cord. He was doing something to help. "I always tell people that if I couldn’t benefit from the trial myself, then I was going to participate to help someone else."
After his one-time dosage of stem cells, he experienced several positive effects, which they've concluded are a result of the trial. His fatigue was significantly reduced and he gained seven pounds and maintained the weight. But the biggest change involved the twitching that occurs with ALS. After the stem cell trial, his twitching was reduced by about 90%. He says, "MY ALS IS STILL PROGRESSING, but so far, at a significantly reduced rate."
Throughout all of this, Ted still feels blessed. He has the strong support of his family and friends, who have joined Ted and Jaci in the battle to fight ALS. He thanks the Mayo Clinic team fighting the fight with clinical trials and their support of events like benefits and running races as well as their donations to help fund research to find a cure.
Despite the advances in treatment and therapies, like stem cell trials, ALS is still fatal. No one diagnosed with ALS has survived.
Your donations to ALSA Wisconsin directly help ALS patients and their families who are fighting this disease in Wisconsin. Donate this Giving Tuesday because nobody should have to surrender his or her passions and hobbies to a disease.