I have been living with ALS for over eight years. It is the most difficult, heart wrenching thing I have ever done. What is ALS like? I am so tired all the time. I doubt that most people have anything to compare this to. On my best days, my energy is comparable to when I was exhausted before ALS. This is beyond tired in your bones, the bones that now show because the muscles aaare so atrophied it`s as if they don`t exist. The muscles are gone` so that itch that I have on my cheek has to either wait until I am able to tell a caregiver and have them scratch it for me (and despite best efforts is never quite in the right place), or I can sit with it and wait for it to go away. And very often I would rather just sit with the itch and pretend that I have some time to myself. For some reason people with ALS get itchy all the time, so this scenario happens every day. I would rather have the minute torture of an itch in false solitude than have to use the energy of calling out to someone in the next room and explaining what I need help with yet again. Because I`m never alone, not even to go to the bathroom. Forget modesty and having any sense of control. Independence is found in the small moments of still being able to move my head to get the toothbrush in a better place while someone else is holding it, or choosing what tea I want to drink. Now, take all of this and add some daily pain that you are so used to that you don`t realize how much you hurt. On top of that, imagine how hard it is to breathe when a full grown Bernese Mountain dog is sitting on your chest and you have phlegm in your throat that you cannot cough up. And then imagine trying to talk with a spike going through your tongue and someone has their hands around your throat. Add that sense of depression that can only come with the knowledge that you are dying (probably soon), that the government and health care industry don`t really give a damn about your plight, and that no matter how bad you might be feeling right now, it will get worse`much worse, before the end. Finally, try to be patient and kind and forgiving when the people who are taking care of you spill your entire meal of liquid food all over you and your bed. Somehow, I still find that I love my life and manage to find joy almost every day.
The past two years have taken on a life or death purpose for me. Since my diagnosis of ALS in April 2018, I went from working a full time job and living a comfortable, independent lifestyle, to a disability and fighting for my life and control of the most basic things in it. Since my diagnosis, I have been keeping busy fighting for policy change and early access to promising treatments for all ALS patients. Recently, there were 2 new bills introduced for ALS: HR.7071 and S.3872. Also, recently the National Institute of Health introduced an award program that will dedicate $25 million over 5 years to ALS research.