Tell us about your symptoms and treatment experience. Take our survey here.

Monster under my bed

I never shared my story before or made a formal announcement of having PD, so here it goes ...

I was diagnosed in 2012 but I had my suspicion earlier than that. To this day only family and very few close friends know. I worked in retail from 2006-2018 till they closed their doors, never told my employer. I guess it was somewhat mild at that time and I didn't want to be pittied or seen differently.

I went on disability

I then got another job (not retail) but still did not tell anyone until a customer came up to my window for help. This gentleman had PD worse than me. I went to the break room and broke down. My heart hurt for him. But it also hurt for me. I was looking in a mirror and saw a reflection of what I was to become.

My boss saw me crying miserably so I told her, she understood and never treated me differently. I worked there for 3 years. I went on disability due to sleep was hard to come by and handling the computer was awkward when the effectiveness of my medication was gone.

PD invaded my life

I call PD the monster under my bed because it came into my life and is slowly trying to take over my life. I have kept kicking it back under my bed all this time, but the monster is winning after all these years. This monster invaded my life, he was invited in, and I certainly wasn't going to acknowledge him.

It has been 11 years and I somehow have to make peace with this monster. I need to find a way to co-exist with this beast. The uninvited guest is here to stay.

For most of these years, I was hoping to get a call from my doctor telling me I was misdiagnosed. The call is never coming. At the beginning of my journey, I would schedule my doctor's appointment for the first one of the day. I would be in and out so as to not see anyone with the later stages of PD.

My denial and fear. I was petrified of what my future was to become, it wasn't what I dreamed of for my life. My life now has an expiration date, not from PD itself but from complications of PD.

My life now

My life as of today, retired little over 2 years. I get roughly 1.5 hours of sleep a night. the effectiveness of my meds is again changing which means the monster is gaining ground. I move slower than I would like. I dealing with some depression. There are good days but also a lot of bad.

I have my first counseling sessions in August which I guess is a good thing. I started looking for support groups in my area. If there was a silver lining in all this it would be I still have breath in me to fight the monster God's Blessings to all.

By providing your email address, you are agreeing to our privacy policy.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The ParkinsonsDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

Please read our rules before commenting.

Community Poll

Now that it is getting warmer, are you able to sleep well?