BillsStory

I retired at 58 years old from CAA Niagara on October 1st 2021 after 40 years with my last role being Vice President of Automotive Services. I was ready to spend time with my wife enjoy travel, or kids and grandkids and become one of those with snowbirds in the south. I had soon started dealing with some very mysterious health issues starting March 2022. My family actually had an intervention with me thinking I was closet drinking and not adapting to retirement but I assured them I was not and something wrong medically was happening to me? Over the next 6 months I visited the ER quite a few times resulting in being referred frequently to the Stroke Clinic in Niagara Falls. Several tests were done over a few months having 3 cat scans, an MRI, Doppler test, bloodwork probably 20 times and even saw 2 different Neurologists in Niagara Falls and all they could tell me in Niagara is “its not a stroke”. They also advised it could be possibly be related to vaccinations for at that time I had all 3 COVID shots as well as 2 Shingrex shots. I was then put on a waiting list for a Neurologist Investigator in Hamilton in August 2022 but earliest appointment I could get in was April 2023! ( I would never have made it!)

I truly thought my time was limited for now I could no longer maintain our home, I could no longer drive and becoming depressed because my symptoms were multiplying. We made the decision to sell our home and move to a condominium to make things easier and deep down I was wanting to make sure my wife was looked after. 

The end of September 2022 my heath really declined rapidly for my slurred speech was terrible, I couldn’t chew/swallow to eat, double vision, eyelids had pretty well shut, my hands were cramping, arms and legs weak, could no longer hold my head up for no muscle strength and then lastly the worse it got to my lungs and I was having difficulty breathing. I now had really become a hermit because I was embarrassed to be around people. 

My Son lives in the Ottawa Valley and was hosting Thanksgiving but deep down I knew I had to get to him for I figured once he saw how serious my condition had gotten so quickly the last few weeks he would maybe come up with some idea on a game plan. I felt he was my last resort to make things happen for I honestly thought my own Dad was going to outlive me!

My Son, who works in heath-care in Finance and knowing how the system works knew that the hospital in Renfrew Ontario (who were excellent) was a feeder to the larger Ottawa Hospital . He knew people there and knew certain channels had to be followed that we had to go through their ER doctor and once they saw my condition he was confident they would take action. He was correct the ER Doctor was very thorough and excellent! He did several tests then advised me he had a discussion about me with the Neurologist on call at Ottawa Civic Hospital and advised us he got me an emergency referral appointment to Neurology at Ottawa Civic Hospital. Due to my history he also arranged the appointment to be with a top Neuromuscular Neurologist Investigator whom he referred to as the “House of Ottawa” which to me he was my life saviour.

All my health records were transferred in advance of me arriving  and once there I met Dr. Pierre Bourque investigator in Neuromuscular Disease who immediately started a couple hours of testing. He came back and said he was positive he had a diagnosis but however to back up his diagnose they had to do an EMG a very invasive shock test where they used an X-ray/ultrasound style scanner and electrical shock would be sent through my head, arms and chest to see the blockages in the small blood vessels. He also asked if I was fine if he brought in a team of student doctors to witness because if he is right it’s very rare and he wanted them to experience, I was totally fine. The test was the worst pain I ever went through but it was definitely worth finding out what was wrong with me. Concluding the test I was taken back to his office where he confirmed his diagnosis of Myasthenia Gravis. He said there is no cure but he can fix me and I sat there with my head in my hand sobbing for finally I may have help. He also took more blood and sent it away which later came back ” AchR High positive”. Dr. Bourque said I was in a full blow crisis and I was immediately admitted to the ICU. I spent 5 days in ICU with 4 straight nights of receiving IVIG  infusion but wow every day I was improving and getting more functions back. I spent 8 days in the hospital total and left a new man! It is nice now knowing a diagnosis but unfortunately the next few months would be getting me stable with the medication to live a long normal life. 

Dr. Bourque had a dietitian come to my hospital bed before being released providing me a diet that will help. 

It is now July 2025, I am feeling good and continuing to I have my life back but it’s life with MG. I have to listen to my body for when I am tired rest and don’t over exert myself for I will pay for it. I do have good days and bad days where I am pretty well in bed all day but thankfully I have many more good days. I know I have a long road ahead of me but so far things are going well. 

Diagnoses of the rare Myasthenia Gravis is scary yet I am very relieved to know what I am dealing with and I am up for the fight. Having a fantastic understanding caring wife who doubles as my caregiver has made the MG journey a true “for better for worse in sickness in health” for she has been my biggest supporter, cheerleader, nurse and not sure if I would have made it through this without her. 

Dr. Bourque also gave me peace of mind saying that there is no clinical proof that my getting Myasthenia Gravis has 100% nothing to do with vaccinations! He still today with my compromised immune system he makes sure my vaccinations are always totally up to date. 

C