ALS IN WONDERLAND Foundation

Kristine Phillips, ALS service learning project, UA of Little Rock Nursing.

On Saturday, February 16, 2018, I and a few of my classmates visited with Mr. Jim Bell and his wife in their home. Mr. Bell is diagnosed with a disease called ALS. ALS is a progressive neuromuscular disorder that completely disables the body of all motor function but does not affect the brain. It is unknown as to when motor function will start to decease in the patient. No one person progresses in this disease the same. The only known thing is that inevitably, the patient will lose all motor function at some point and will require a tracheostomy to assist in breathing, and a peg tube to assist in feeding. Doctors usually give the patient about a 2-5 year lifespan after diagnosis. 

Mr. Bell first noticed that something was wrong in January of 2018. He was working out, which was very normal for Mr. Bell, and after his workout he collapsed. Before this incident, Mr. Bell described himself as a very healthy individual. He worked out often and ate well. Mr. Bell stated that after collapsing, he no longer went to work out and began to seek out what caused the incident. Mr. Bell said that he visited the doctor many times and was put through many tests. Mr. Bell said that he and his wife moved to Arkansas around June or July of 2018 and in August he received his diagnosis of ALS. As of now, Mr. Bell is still ambulatory. He can walk but needs to have the assistance of a cane, walker, and sometimes a wheelchair. Mr. Bell said that he is now a fall risk, he has fallen about 7 times since being diagnosed. Mr. Bell was still hopeful that he was misdiagnosed as many are with ALS, since there is not one definitive test that will diagnose such a disease. At best, they can rule out all the other neuromuscular diseases. He received confirmation of his diagnosis in October of 2018. Mr. and Mrs. Bell both stated how shocked they were to hear such a diagnosis. Mr. Bell stated that he does not have any family history regarding the disease. Mr. Bell stated that he always thought that since his work was dealing in chemistry, that he would get cancer due to dealing with chemicals daily. Mr. Bell stated that he never would have imagined being diagnosed with ALS. Mr. Bell has been proactive in his care, he got a lift chair that gives him a boost so that he can get up when his legs are feeling weak. He got a lift on his toilet for the same reason. He uses his cane, walker, and wheelchair as needed. Mr. Bell stated that he now has an aid come to his house a few times a week to assist him in his daily life. This is now his future, he will need assistance from someone for the rest of his life. He stated that he doesn’t feel comfortable leaving his home anymore, because of the risk of falling or being a burden on anyone. 

Mr. Bell and his wife were very welcoming of us in their home and answered all of our questions, but you could tell if was difficult to discuss such a lifechanging disease. It was very apparent that they themselves were still adjusting to the news. There is still so much unknown to them and they stated that the resources available were lacking. We offered Mr. Bell our service, if there was anything he would like for us to do while we were there. He declined our offer. I do not know if our visit was of any help to Mr. Bell or his wife, but I do know that they have made such a huge impact on my life. I have had the pleasure of caring for ALS patients in a clinical setting, but they were total care patients and have been diagnosed for some time. Mr. Bell being a newly diagnosed patient, really opened my eyes to the type of emotions and fear that a patient can have with this diagnosis. I really feel like I now have a better compassion and understanding for these patients. If I come across a newly diagnosed patient in the clinical setting, I believe I can be a better nurse in taking care of them and their family. Being a nurse is not only about medical knowledge, it is about how you connect on a human level with your patients. They can’t just be seen as an object of science. 

Kristine Phillips 2019

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