Tara's Story

My name is Tara Taylor, and I am the wife of Paul Taylor, who was first diagnosed with pure ocular MG at the beginning of this year. In April, his condition progressed to generalized MG, and more symptoms appeared. We live in Cambridge, Ontario.

We are in the beginning of our journey with myasthenia gravis. It has been an information overload, and we often don’t know where to turn or what to do. It is very daunting and discouraging, to say the least. We are trying to plan for the future while staying on top of this condition.

I worry about what the future holds for my husband. Will I be able to maintain work while also providing his care as his needs increase and the disease progresses?

My typical days now revolve around ensuring that Paul has taken his medications and has eaten properly. I make sure he gets the rest he needs. Day trips and outings can be much slower now. If he is having a bad day, our plans are often shortened or cancelled entirely.

I’ve learned to recognize the difference between Paul’s good days and bad days. On a good day, nothing can stop him. He can accomplish so much, and we truly enjoy our time together. On a bad day, he sleeps most of the day, or at best has very low energy, and we just aim to get through the day, hoping for a better one tomorrow.

Good support means knowing that we are not alone—that there are others in the same situation. Having groups or other people to give encouragement and feedback, along with practical tips to help, would mean everything to us. Paul and I encourage each other, and our friends have been wonderful, but we’re still searching for that broader community.
I wish there were more support groups and additional resources available. We’re looking for that connection with others who understand what we’re going through.