Andrew's #LifewithALS and History with the Disease
If you are interested in seeing videos, made entirely using my eyes, documenting and educating on my #LifewithALS, I post to Instagram,Tiktok, Facebook, and Youtubeall under the username @AndrewWithALS.
I was diagnosed with ALS in May 2017. This was only a few months after my initial symptoms — continuous twitching in the muscles of my right arm and a growing weakness in that right hand — that had me convinced there was something neurological going on with me. I underwent a couple of MRIs of my neck and head looking for a possible pinched nerve (both not revealing any problems) and then a nerve conductivity test with my limbs (which showed problems but not a conclusive culprit). Guessing I may not get the specialized neurological examinations locally (in the New River Valley of Virginia) that I was quite certain I would need, I left for Chapel Hill as soon as my semester of teaching was over. There I knew I could avail myself of the many resources of UNC's and Duke's hospital systems.
After a wide array of tests, I was called in to Duke's neurology clinic where they informed me that I likely had ALS. (Perhaps the strangest part of ALS is that there is no definitive diagnosis, just an array of symptoms and a bunch of tests meant to rule out every other possible cause.) The diagnosis wasn't a shock to me, as I had already reached the same conclusion based on my research into my symptoms. The neurologists and my parents probably thought I was in denial since I took the news so matter-of-factly, but I accepted the diagnosis as a change in my life and not a death sentence. I still look at my ALS in that way.
Prior to my ALS diagnosis, I was a professor of photography at Radford University in Virginia. After the diagnosis, I made the decision to keep teaching as long as I could since the progression of this disease is so variable. Unfortunately my symptoms progressed rapidly. I was only able to make it through one more year of teaching before my voice, legs, and hands had too much difficulty with all the demands of teaching. And I owe an enormous thanks to my brother Coleman who came to live with me during my last few months of "independence".
Now, after 7 years of living with ALS, I require an eye-gaze computer to speak, text, and email; all of my meals are via a feeding tube; my breathing is constantly supported by a tracheostomy and a ventilator; I am confined to my wheelchair or hospital bed with almost no muscle movement; and I need the 24-hour support of a team of nurses.
So where does ALS United North Carolina and the Walk ALS Triangle fit into all of this?
ALS United North Carolina (formerly the ALS Association North Carolina Chapter) has been there to help me since the very beginning. They provided me information as I sought to understand the disease and what to expect from it. They gave me details on the various ALS clinics in North Carolina and Virginia so that I could consider which would be best for me. They demoed technology equipment for me that I otherwise might not be aware of. ALS United NC hosts gatherings of persons with ALS and their caregivers to educate them on the disease. They provide a wide variety of loaner equipment. More than anything, ALS United North Carolina is always there to support those of us with the disease and our caregivers.
The Triangle Walk raises funds to support those affected by ALS and to spread awareness of the urgency to find treatments and a cure. Please consider walking with me or, if you can't, by sponsoring me. With your help, we will be able to make a difference in the lives of people affected by this disease.
Thank you for helping me reach my Walk ALS Triangle fundraising goal!
If you think this page contains objectionable content, please inform the system administrator.