My name is Edana Gust. When I was diagnosed with ALS on April 1, 2019, I told the doctor that it was April Fool’s Day and I was hoping he was joking. He assured me it was no joke. My husband Doug and I were just numb from the diagnosis. I’ll provide a little background on how we arrived at the diagnosis. A year or so earlier, I had noticed some discomfort with my right knee, and we started a process to find out what was happening. The consensus was that it was osteoarthritis, but nothing seemed to be helping and my mobility and balance were beginning to suffer. In December 2018, my voice changed and there was concern that perhaps I had suffered a stroke. All the tests for heart conditions came back negative so I was referred to a neurologist. After a CT scan and MRI, I was scheduled for an EMG on April 1 and the diagnosis of ALS was made.
The next month can be described as a grieving process where we wrestled with the reality of the diagnosis and came to grips with what the future might hold for us. Life is a journey, we don’t get to pick what’s placed in path, but we can choose how respond to the unexpected. Fortunately I didn’t have to wait long until I was able to attend my first ALS Clinic where I was able to meet the amazing resources dedicated to supporting those living with ALS. I met Michelle with the ALS Society shortly thereafter Rob came for a visit.
We were living in a two-story house and owned a bungalow style condominium that we had as a rental property. We began plans to renovate the condo and make it “wheelchair accessible”. What a blessing to eliminate stairs and have everything on one level! The ALS society provided a porch lift, a scooter, and a walker, so I had my mobility back!
My speech continued to deteriorate, and I met the speech therapist with ACETS to began learning the fine points on use of speech devices. I now have my speech device and know how to teach it my favorite phrases.
I have been blessed with incredible support from friends and family and we keep in touch through zoom and “socially distanced” visits. I am thankful that I can continue to knit and crochet. In 2020, I set a goal of knitting 20+ sets of toques and scarves for my brother to give as Christmas gifts. I started them in July and completed them by September. I then began a quest to complete an afghan for each of my nieces and nephews. The first 20 were complete in time for Christmas. The next twelve are now complete. In the midst of the afghan project, I did 7 baby blankets for the new additions to the family, and 40 preemie hats.
I am grateful for the ALS Society and the support they continue to provide. It was wonderful to be asked to share my story.