Sharing Your Diagnosis

When getting first diagnosed, it is hard to know how and when to share an Alzheimer's diagnosis with others. It is a personal decision and you should feel comfortable about it when and how you decide to break the news. Some families think it is too devastating to share, others need help and want others to know.

Personal decision

In my case, I wanted people to hear it from me. I was still working at the time of my diagnosis, and I wanted to be truthful to my staff and those that I came into contact with. I had a pretty high-profile job and I knew that word would get around quickly but I ultimately wanted it to come from me.

A new set of court rules

Several years after my retirement I started playing pickleball for exercise. I enjoyed playing but found that my Alzheimer's created a new set of problems for me.  After I finally got the hang of the game I realized that the noise from other courts was bothering me. I could not filter the noise out so it was difficult for me to concentrate.

Drown out the noise

We also played in a gymnasium where one side of the court was filled with bleachers. People would sit on the bleachers and wait their turn for a court. People were constantly moving around on the bleachers, talking, and this distracted me too - I could not focus on the game.

In order to help myself, I began bringing earplugs to drown out the noise. I asked my partners if they minded that I play on a certain side of the net with my back to the bleachers. No one questioned it and I didn't feel comfortable sharing the reason with people I didn't know very well.

I also didn't want to share because I knew firsthand how people treat you differently when they find out you have Alzheimer's. I talked it over with my husband decided since we were new to the game we would keep it to ourselves for a while. I was not ashamed of it, I just didn't want to have it affect my relationship with new friends I was making.

Out of bounds: calling a fault

Then, it happened. I was having a bad day on the courts and I left the gymnasium. I only remember that I had to get out of the building and get away. Everything was crashing in on me and I needed to get out. I was having a major panic attack. My husband found me outside sitting on a park bench. It was cold and I could not understand what he was telling me. I didn't want to go with him. He finally convinced me and he took me home. It was scary for us, as that was the first time I wandered away.

Sharing my Alzheimer's diagnosis

That is when we decided we needed to share my Alzheimer's diagnosis with some of our fellow players. Many times I play pickleball without my husband and I was afraid that if I wandered away again no one would know to come to look for me. I needed others to know so if they saw my purse and belongings and they couldn't find me they knew to go looking!

All of them took it in stride and never flinched. They now understand when I am having a bad day on the court and need a break. They treat me just like everyone else and take pride in beating me on the court!

Do you have a diagnosis story that you want to share? Our community wants to hear from you!