Matt J.

Meet one of the early users of the diaphragm pacing system.

Note: this is an adaptation of a story from the book Bionic Pioneers

It is all too common for neurotechnology devices to be an option of last resort. It is a precarious situation in which all other options have been attempted with no success. In this particular situation, Matt bucks the trend. This is the story of one family using technology to stay two steps ahead of the progressive condition of Lou Gehrig’s disease or ALS. This is also a story about maintaining quality of life. Quality of life is often talked about but it’s hard to exactly describe what it means. Each individual defines it differently. The impact of quality of life is not always realized until it is compromised.

Matt was a father of five and had a pretty “normal” American life. The first time he suspected something was not quite right was when he was trimming his fingernails and had difficulty putting pressure on the clippers. Then he started to have trouble gripping a baseball and running between the bases. It was like something was seeping into his life, but he did know what.

It wasn’t until Matt started falling and those falls began interfering with his carrier route that he decided to see his doctor. Matt was referred to a rheumatologist who suspected that he had myositis, an inflammation of the muscles that causes weakness and fatigue. Not fully satisfied with the diagnosis matching his observed symptoms, Matt sought another opinion, this time from a neurologist and he confirmed that it was ALS.

As an avid baseball fan, Matt knew of the legend Lou Gehrig and the debilitating disease; which holds his name. After his initial diagnosis, Matt was shocked and even depressed. It took some time for the prognosis to sink in but then Matt had a revelation. He entered into the acceptance phase and determined to himself, “I can handle this.”

Hungry to learn about the progression of ALS and to stay two steps ahead of its progress, Matt hunted the Internet to learn more. He became involved with an ALS on-line support community and would read frequent posts on the site. One post was attractive to Matt and his family. It was written by a woman who described her Diaphragm Pacing System. ALS weakens the diaphragm of its victims causing insufficient oxygen into the lungs. This leads to a condition called chronic hypoventilation and leaving the person dependent on a ventilator to breathe. DPS is a surgically implanted neurostimulation device that improves breathing for those with ALS and other conditions plagued with breathing problems.

Reality of the progression of ALS was seeping into the their lives. At that point, they knew they had to stay two steps ahead of the disease. The preservation of quality of life became a driving force for their future decisions. They spoke with people who use the DPS device to understand the process of getting one implanted. Medicare insurance would cover the device and the procedure. They concluded it would be a way for them to keep a quality of life for a longer time; the time they wanted together. And together they made the decision to have the device implanted into Matt’s body.

Even though getting the device was viewed as a preventative measure or more like a means to stave off the inevitable, Matt recognized that the device “became part of my body.” He had delayed the decision to get the device as long as he could. When the symptoms of ALS started to progress, he viewed the DPS as a less invasive and less obtrusive option than breathing with a mechanical ventilator. It was less maintenance as well.

Endeavoring to stay one step ahead of his disease is how Matt has approached his diagnosis. He has a level of acceptance of his diagnosis and the fate of the disease. It is a noble and courageous one. Matt’s choices are based on his desire to be in control of his life rather than let the disease take over. When he was initially diagnosed he learned everything he could about the disease, its progress, and his options. He knows that he will lose mobility, lose the ability to feed himself, and eventually lose his ability to breathe. He got the power wheelchair before it became a dire need. He will get the feeding tube before he can no longer feed himself. He had the DPS system implanted before he had to live with a mechanical ventilator. This is not to convey that he is pushing the progression of the disease. More so, Matt is leading himself on his own journey.

With that knowledge, he controls his quality of life and he has become a leader to help guide others with similar outcomes. He and Jackie are active in their ALS support group. It has helped him and he finds this as a way to give back to others. Every other month, they host a gathering of people living with ALS and their loved ones into their home. The time gives them an opportunity to reflect, interact, and converse with others in similar situations. It is a time to learn from each other the lessons that cannot be reviewed in a brochure or found through Google.

While using the DPS system, Matt was able to remain as active as possible. He and his family engaged in a YOLO (You Only Live Once) summer tour. They went to places he always wanted to visit and shared them with his family. Starting in Florida, they visited destinations like Graceland in Tennessee, Mount Rushmore in South Dakota, Pikes Peak in Colorado, and the Grand Canyon in Arizona. It was an experience he always wanted to embrace. The joy, the adventure and the sensations are what Matt defines as the best of quality of life.

Learn more about DPS technology and other neurotech devices, therapies and treatments applicable for ALS from our free on-line neurotech directory here: https://neurotechnetwork.org/directory-home/als-or-lou-gehrigs-disease/