Near the end of August, 2021, my husband, two daughters, granddaughter, and I noticed that my speech was starting to slur. I did not think too much about this at the time. For the next three months, my speech continued to slowly decline, until a new symptom appeared. I began to choke a lot when eating or drinking; I even began to choke on my own saliva. I made an appointment to see my family doctor in January 2022.
My husband, Rick, went with me to ensure that the doctor could understand what I was saying. That appointment was the start of my journey meeting a number of doctors and going in for tests in a number of different fields of medicine. All had the same answer that nothing was wrong from their exams or test results. I went to the Speech and Swallow Clinic at the Glenrose Hospital, and the results of their test was that I had a decrease in muscle strength in my tongue: cause unknown. I met with a dietitian after the results and she went over my diet, ( I’m celiac,) and made helpful suggestions on what to eat to reduce the chance of choking while eating. They also referred me to the Speech Therapy program, only a six-month wait to get into. At least I had some indication on what was happening.
Over the next six months I met with my family doctor again, inquiring if I had a mild stroke or anything else that could cause the symptoms that I was having. My speech was still declining, not noticeable on a day-by-day basis, but friends who had not talked with me in a few weeks or a month could notice the change. My family doctor got me a referral to a Neurologist for December 1, 2022. Rick and I arrived early for the appointment, and our daughter Kimberley insisted on coming with us. We met with the doctor, who did a clinical exam and then an EMG. At 10:00 AM that morning, his diagnosis was ALS.
Our world changed in a nanosecond. He said that he would arrange for a MRI on the brain and refer me to the ALS Clinic at the Kaye Centre in Edmonton. A lot of tears were shed on the way home. We talked to our oldest daughter, asked her to come over, and told her the diagnosis. My sister also came over and we chatted. More tears. Rick picked up our granddaughter from highschool and brought her home with her mom and aunt. We told her the news, more tears. Some difficult phone conversations were made with family and friends – all were devastated by the news and very supportive. I received a call from the ALS Clinic, booking an appointment to meet with another neurologist to confirm the diagnosis in January. His diagnosis was Bulbar Onset Amyotrophic Lateral Sclerosis.
We met with the ALS Team at the Clinic. They were all very supportive, and willing to spend the time to answer all of our questions, no mater how trivial. They told Rick to call anytime with any question or concern, and that they are there to support us as we are on the journey with Susan. The ALS Clinic said to register with the ALS Society of Alberta, as they have many supports for both the patient and family caregivers. It was the first website Rick visited for information on ALS and how to support the individual with ALS. He called the 1-800 number and talked to a person in the Calgary office. She was extremely helpful and said that she would transfer him to the Edmonton office, as that is where we reside. He had an excellent conversation with Stephanie Saga, who helped him through completing the registration process while on the phone. She sent an email regarding the process and told us to call if we had any questions. A few days later, we received an email from the ALS Society inviting Rick and I to participate in online Zoom support groups, with me in the patients group and Rick in the family support group. Thus far I have participated in one session, as my speech is altered so it is difficult to understand what I am trying to day. Rick has participated in a number of family group sessions, and all have been extremely helpful in sharing our story, listening to other caregivers stories, and the positive exchange of group members supporting each other. One participant shared that her father with ALS had a stair lift installed so he could continue to access his “man cave” in the basement. When I had a respiratory illness and lost weight and strength to the point it was challenging for me to climb the stairs, Rick thought about that conversation.
On the next caregivers support group session, he asked a question regarding stair lifts. Stephanie called him and let him know at my next ALS Clinic session to request a home assessment and a PT or OT will come to the home, make an assessment of what health care aids are required, and the ALS Society will make it happen. I could not ask for better support than that. To help with the choking and to ensure that I do not lose any more weight, the ALS Clinic suggested a feeding tube. I had the PEG Tube “installed” on January 19, 2023 and the choking issues dropped significantly to the point where it has been days between episodes. I can still eat almost anything that I want to in addition to the formula I receive via the “tube” at the present time. I started on Riluzole, an ALS medication that had been used for almost twenty years at this point. Hopefully, it is slowing my journey with this horrible disease.
I just started on Glycopyrrolate, which is supposed to help reduce the amount of saliva the body produces to a much lower level. A nice benefit about the G tube is all medications are given through the tube ,so I do not worry about choking issues trying to swallow pills. I have signed up to participate in clinical trials to find a cure for ALS. Hopefully a cure will be found sooner rather than later. My symptoms at the present time are speech. choking, swallowing, excess saliva, cramping in both hands, and loss of fine motor skills in my right hand. No mobility issues at this time, thankfully. I am starting to use a text to speech app on my iPhone and iPad to assist in communication with family and friends. I am getting better at using the app the more I use it each day. I still like to walk to the mail box each day, chat with neighbours as best I can, and spend quality time with our two daughters and two grandchildren.
Rick and I still make a Starbucks run occasionally, and now with the return of warmer weather the occasional DQ sundae. I want to spend as much quality time as possible with Paxton, who is turning two years old at the end of May. Reading is still a passion – the library is close by, which is a good thing as I am there almost every week. I would like to thank the ALS Society of Alberta for their ongoing support as I continue my journey with ALS. Hopefully it will be a long and slow journey.