The four parts of my ALS work are conducting scientific research to help determine the cause of the disease/develop effective treatment for patients, raising awareness of the disease/educating others, helping nurture young scientists so that ALS research can continue, and working with people with ALS (pALS) to help improve the quality of their life. In order to help improve the quality of life for pALS, I attend support groups around Illinois and Iowa. My favorite support group to attend is hosted by the ALS Association Greater Chicago Chapter and is held in North Riverside, IL the third Saturday of every month. Ever since Dr. McLaren lost his battle with ALS in June, support groups have become much more difficult for me to attend. Discussing the struggles pALS are facing or seeing their withering bodies reminds me of Dr. McLaren’s pain and a wave of sadness washes over me. There are no words that could ever describe the pain of losing someone you care about to this disease. I still remember being at his side during some difficult moments. Since support groups are already filled with tears and despair, I try my best to push my negative feelings to the back of my mind. There is nothing I can do to bring Dr. McLaren back so I need to focus my energy on moving forward and helping those currently fighting ALS.
The support group that was held on August 19th was a fabulous opportunity to learn more about the respiratory struggles pALS face and devices that are available to assist them. A respiratory therapist from Home Patient Services was in attendance along with a few assistive devices. The first device that was introduced to the audience was the Cough Assist. The Cough Assist is non-invasive, easy for pALS or caregivers to use, and effective in clearing secretions. Keeping the airways clear can truly help pALS feel better. Coughing is a natural part of life, but people with ALS will most likely experience a loss of respiratory muscle strength resulting in a inability to cough or effectively clear secretions. When a person with ALS inhales, the device will gradually give them air (positive pressure) and when the person exhales, the machine quickly pulls the air out of their lungs along with secretions (negative pressure). Because there is such a rapid shift in pressure, the person’s cough increases in strength and becomes more effective. The Cough Assist helps keep the airways clear in pALS and so the risk of respiratory infections decreases. There are times when this device can be uncomfortable. The person using the device should avoid taking too many breaths as this may result in pain and exhaustion. Many pALS and their caregivers have reported that the Cough Assist has been very effective. Another device the respiratory therapist brought was the Trilogy Ventilator. The purpose of this portable and lightweight ventilator is to artificially assist a person’s respiratory muscles in performing the act of breathing. This assistive device can provide either invasive or non-invasive ventilation. A non-invasive ventilator will provide support through a nasal mask or full face mask while an invasive ventilator will provide support through an endotracheal tube or tracheostomy. As one can see, support groups are always a reminder that I have so much to learn about every aspect of the disease.
A topic that was brought up during this support group was the possible link between ALS and repetitive head traumas/concussions. An elderly man with ALS seated at the table next to mine stated that before he was diagnosed with the disease, he had fallen down the stairs and hit his head on the floor. He wondered if that head injury was related to his ALS diagnosis. I let him know that it was possible, but millions of people around the world get concussions and never get diagnosed with ALS. For those who are unaware, there is a controversy as to whether or not concussions cause ALS. Although there are more and more NFL players and others that are prone to head injuries being diagnosed, it has not yet been proven that repetitive head traumas/concussions definitely cause the disease. There are research studies currently being conducted at institutions around the world on the relationship between ALS and concussions. Discussions like this truly make me think. What if concussions do cause ALS? What makes some people who get concussions develop ALS and others don’t?
Even though I walked out of the meeting room feeling much more informed about respiratory devices, I found myself asking more and more questions about this mysterious disease. I sometimes struggle with the fact that I leave support groups with none of my questions answered, but I keep in my heart the knowledge that I may one day use this information to help put an end to ALS.
My mission to end ALS was featured in the Des Moines Register today! Please go to http://dmreg.co/1qu3Cs5