My name is Terry Loustel and I am 74 years old. I have been with my life partner Christine Lasalle for 43 years and we have one daughter Cassandra and a grandson Roman. I worked at Canada Post for 28 years, retiring in December 2010 as a manager. Christine, some friends and myself built our forever home in 1985-1986 on Last Mountain Lake in Saskatchewan. We still currently live there. Living on a lake led to having boats and sea-doo’s to enjoy on the water. In 1991 we bought our first 5th wheel trailer and have since travelled all over North America. Our last trip was in the summer of 2019. But my true passion was snowmobiling, starting in 1972. I went to West Yellowstone for 25 years, sometimes more than once a year with each trip being 7-10 days. I loved anything mechanical and spent endless hours in my garage/shop. I was physically active my whole life until ALS changed my life as I knew it.

In 2019 I began to experience weakness in my right leg and was referred to a neurologist. After 6 MRI’s, 5 CT Scans, 2 PET Scans, 2 muscle biopsies, countless EMG/NCS tests, endless blood samples some of which were sent to the MAYO clinic and 3 neurologist’s I still had no diagnosis. Through this process I went from walking slowly to needing a cane, then a walker and finally a wheelchair. In April 2022 I had my first appointment with the ALS Clinic in Saskatoon, Sk. At this appointment I was diagnosed with ALS. Devastating news to be sure with a life expectancy of 2-5 years. As sick as it sounds, I was relieved to finally know what was wrong with me. Over the course of these 3 years, the uncertainty and putting my life on hold was finally over. I could now plan for my new reality.

Living with ALS means giving up everything you knew or did in life. You become 100% dependant on someone to look after you. Someone must do things like brushing your teeth or washing and shaving you. You lose your ability to feed yourself. You need help to go to the bathroom. Eventually you just become a physical vessel unable to do anything.

The most surprising thing about living with ALS is first, how long it took to get a diagnosis. It’s like everyone was afraid to tell me I had a life ending disease. The other thing is the total loss of mobility. I was not prepared for that.

I have chosen to use my remaining time to advocate for the ALS community. Whether it be doing media interviews, supporting other ALS patients or participating on group zoom calls where we talk all things ALS related. I am a member of ALS Action Canada, ALS Canada
and ALS Saskatchewan. This winter I became a CALI graduate which helped teach me how to better engage with the ALS community. I must admit that my 73 year old brain did not take kindly to doing homework again.

It’s hard for the average person to understand what living with ALS is like. I believe that as a person with ALS it is my responsibility to share my story with as many people as possible. The public needs to understand the importance of finding a cure for this disease so future generations do not have to suffer like I am.

I don’t have emotionally down days for the most part, although I do get frustrated from time to time. I lived a full life with so many good memories and that is what keeps me motivated now. Having a positive attitude goes a long way in living with ALS. I do feel sadness when I hear of young people being diagnosed with this disease as they will not get to enjoy life as I did.

I would say to Canadians, get involved in fundraising and take the message to provincial and federal government leaders to support ALS initiatives. We need to give more support to the medical and pharmaceutical communities so they can continue looking for a cure or
treatment.

A final thought from me is that I do not want future generations to have to go through what I did with ALS. A world without ALS is what we should all strive for as this disease is frankly very devastating.

Thanks for taking the time to read about my journey.

Terry