Relan Crosby’s ALS Story written by Cathryne Wickwire (wife)
On December 10th, 2021, Relan went to his doctor because his left arm was not functioning properly in the shoulder area and was aching a lot. He attended physiotherapy, did exercises that were prescribed, and also had an ultrasound on the left shoulder. On June 20th, 2022, his physiotherapist discussed with Relan’s GP that the exercises were not doing what they were supposed to, and in fact, his arm was losing ground. He suggested that his diagnosis of arthritis and bursitis was not the problem.
On July 28th, 2022, Relan had his first appointment with a neurologist. This appointment lasted over 2 hours and the neurologist suspected ALS. On August 30th, Relan had an MRI and on September 12th 2022, the neurologist confirmed that Relan had ALS, insisting that Relan not work another day. At this point in Relan’s personal journal, he started numbering the days – this was Day Number 1.
Relan was born with a bright and cheerful disposition – he looked for the good not the bad, and did not dwell on the negatives. He decided that ALS stands for Always Laugh and Smile. So, we started an ALS book. The sections of this book included Timeline, Contacts, and Discussion. Re-reading this book has put this disease in perspective. We went from “Everything will be ok; my work has a medical benefits program” to “What! I don’t qualify because I am over 65?”, to finding other agencies that DO put the patient first.
Family, friends and agencies that work with ALS patients have helped tremendously in getting the items that were needed when they were needed. Items like a lift chair that Relan lived in and later became his bed, sitting in it constantly because with just a small adjust, his back would settle down, his legs would be comfortable, and his peace of mind would settle. We moved from an apartment that had 22 outside steps in the country to a seniors’ apartment building in Leduc that was wheelchair accessible. This happened on January 27th, 2023, with the help of EMS. We received commode chairs, portable power lifts with slings to go with them, and a bed that the air mattress adjusted to movement. And, on the 23rd of February, he received a power wheelchair. I noted in our ALS Timeline that it was a red-letter day! This was Day 166 in Relan’s journal, and another change, he could no longer hold a pen in his right hand, and I started keeping track in my personal journal of his days.
Relan chose not to take part in any of the medications that are offered by the ALS Clinic. We proceeded on a day-to-day basis, choosing not to do any searching of symptoms or signs of what’s next, but chose to proceed with each day as it came and handle it the best that we could with the help that was available. As one of Relan’s visitors said, “He handled it with such courage and dignity. I will never forget that visit.”
On Day 170, February 27th, Relan had a tightness in his chest. Relan had started doing personal messages on his phone to each member of his family and to personal friends, so on Day 170, we started transferring these messages onto his computer. On Day 179 (March 8th), we went and picked up a 2004 Dodge Caravan that was a factory wheelchair-accessible vehicle. We took it to our mechanic ,and on March 20th, Day 190, Relan was able to drive his power wheelchair into our van and he was once more able to be more mobile. Day 199, March 28th, Relan has a catheter installed, the reason being that we will be able to have better nights’ sleep. Relan is starting to become very short of breath.
Day 205, April 4th, Relan goes to the Misericordia Hospital and is in ICU. While here, he gets fitted with a BiPAP machine, a feeding tube inserted, his anxiety is worked on, LVR is introduced as well as a cough machine is used. Relan is here until April 19th, Day 220.
Relan was able to stay home for a short period of time. He did not use his electric wheelchair much, his right arm and hand were failing quickly, and he couldn’t use his computer mouse or answer the phone. He is on the BiPAP machine almost 24 hours a day now, with short periods off of it. Because of not enough arm/hand movement, he can’t alert me. The ALS Society of Alberta has provided a bell system that Relan is able to touch just with a slight movement of his finger that will buzz the speaker that I am provided with. We set it up so that when he does touch it the buzzer plays the William Tell Overture or the Lone Ranger theme song – it seems appropriate for a Western movie buff!
It was such a blessing to have Relan back home, and even though things were continuing to change daily, we still got into a schedule that was good for us both. At this point I had decided that it didn’t matter what household chores were left undone, if Relan wanted to watch me play a game on the computer/big screen TV, then that is what we did. He had lost his sense of taste and his desire for eating, but on April 27th (Day 228), our first anniversary, we shared a replica of our wedding supper from the year before. Relan even had a couple of bites of Caesar salad and lasagna.
On May 3rd, Day 234, Relan woke with sharp pains in the lower right-hand quadrant of his abdomen, went back to the hospital and it was determined that with medication and time, his problem could be fixed. On May 4th, Day 235, time was not on his side, and he determined that it was time to leave. So, still smiling and being cheerful he slipped quietly into a final rest at 10:25 pm.
Thank you, Relan, for the example you left for all those that were watching this part of your journey.