I love spending time with pALS. ALS research and fundraising are very, very important, but so are the individuals and families living with the disease. Some people just don’t understand that! A friend of mine has been living with ALS since 2011 and two weeks ago, I got the opportunity to visit her in her home. I was both excited and nervous for this visit – excited because I had not seen this friend since the Chicago Ice Bucket Challenge in August, but nervous because I knew the visit would be a reminder of my many visits with Dr. McLaren.
I had to emotionally and mentally prepare myself before visiting my friend in order to stay positive and make the most out of the visit. I was so afraid that it’d be too difficult for me that I almost backed out, but I eventually found the courage to go. When I entered her home, I found my friend sitting in a chair in her kitchen and watching television. Her adorable and very protective dog was yipping at my feet. Almost four years after she was diagnosed with ALS/MND, my friend can no longer use her arms and legs and is losing the ability to speak. During my visit, I could barely understand what she was saying, so her caregiver sat behind me and ‘translated’ everything for me. I felt absolutely terrible. My friend was trying so hard to speak to me and I couldn’t make out each word. No matter how upset I felt, I knew I had to keep a smile on my face. I told her all about my sophomore year of college and the ALS work I did during my winter break. As I spoke, my mind kept wandering back to Dr. McLaren. I remembered him sitting propped up in bed and looking at me as I blabbered on about life. I pushed those sad memories to the side and focused on the present. I wanted to make the most out of this visit; I didn’t know when I was going to be back at her side. We continued to talk about family, driving, jobs, and more! One important topic that was brought up during our conversation was the ALS Association’s stance on Genervon and GM6. Many pALS and their families don’t like how the ALSA will not allow this new drug candidate to become publicly available. I completely agree with them. I think the ALSA really needs to take the time to step into the shoes of people living with the disease. The drug may or may not help pALS, but we won’t know until we try! This bothers me. It’s starting to feel like there are two different sides forming in the fight against ALS/MND. I don’t understand why because we should all have one common goal – a cure for this disease. We won’t be able to put an end to ALS/MND until we all work together as one. If you’d like to read a letter about the Genervon situation written by the spouse of a pALS to the President and CEO of the ALS Association, please go to http://www.webelievefightals.com/dear-ms-newhouse.
Over the past few years, several people have asked if it saddens me to spend time with people living with ALS. It does make me a bit sad, but I do my best to focus on the positive moments. If I focus on the sad parts, then I will never get to experience the joy of meeting such amazing people. I’m so thankful I got to hang out with my wonderful friend. I am looking forward to seeing her again at future ALS/MND events. I’d also like to provide a quick update on some current ALS projects. I’m forming a partnership with the Iowa Delta chapter of Phi Delta Theta at Drake University. Phi Delta Theta is a social fraternity that has a special relationship with the ALS Association in honor of former brother Lou Gehrig. The first project we will be working on is my blanket project. After I heard that no blankets were being made for Iowa pALS, I decided to continue my blanket project to help keep pALS in Iowa toasty! I had the idea in my mind since August of 2014, but it just was not the right time. I am so glad I kept it! The next idea I will put into action is the Sarah’s Mission ALS Teen Advisory Board. I will be working on the application for teens in Illinois and I expect it will be available within a month. Stay tuned for more details. I cannot wait to see this advisory board project unfold over the next few months.