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  • Writer's pictureEllen Bookman

Fear sucks!

Everyone knows that we can’t control everything in our lives. Many of us wish we could and are very good at attempting to have everything go our way. I know I am guilty of that. But, I will say that since being diagnosed, I spend less time controlling things and more time wondering when the shoe will drop. It’s not every minute of every day, but it is there. And, honestly, it’s downright scary. Pd is called the ‘“snowflake” disease because it is different in every single person. The fact that there is no guide or roadmap of how this disease manifests itself in each person is very disturbing news.

Today, I feel very stiff in my legs. And, at the same time they feel kind of wobbly. These are the days when my fear level goes very high. I am not incapacitated. I worked all day. But, every now and then, it creeps in and I wonder is today the day that things start changing? Is this the day when I move into the next phase? I don’t even know what the next phase is or how it’s going to affect me. It’s weird to not even know what you are afraid of or even what to expect

I found this article on and thought it did a good job of talking about fear and what it means for people diagnosed with Parkinson’s disease

I think the quote above is probably something that people don’t even consider is an issue for those living with Pd. Remember when the doctor told me that anxiety is not a part of Parkinson’s (I will NEVER let this go…even though it’s getting really old)? Well, she was wrong and fear is real. This fear affects you and causes stress, which then brings on symptoms.

I hate to admit it but trying to be positive is very important! Now, don’t get me wrong, I don’t always follow this advice. I don’t even pretend to not feel down. Have been a lil down the last few days, actually. At the same time, I don’t feel that down that I need to climb into bed like the old days….and stay there for too long. I am going to go to the gym tomorrow and the doctor for my newly acquired tennis elbow - I don’t even play tennis. I got it from boxing. Go figure!

Lesson Learned. Don’t give up! I know it sounds like I am saying it’s easy. It’s not. But, what other choice do we have. I refuse to let this beat me….well, some days it actually does. I think I learned a valid lesson from my former therapist: Whenever I fell off the wagon, all she would say is “then get back on.” It’s such a simple piece of advice, but it actually makes sense.

This is one piece of advice that I have really lived by prior to the diagnosis….now it’s just part of who I am. The alternative sucks!

Comments (1)

Newest First Oldest First Newest First Most Liked Least Liked Subscribe via e-mail📷debbie buchman 8 months ago · 0 Likes Ellen, thanks for you incredible courage and honesty that you are sharing with your loved ones and hopefully helping other people struggling with PD, both physically and emotionally. I guess we never know how strong we are until we are put to the challenge. I know life has given you many blessings and continues to do but now you are faced with the challenge of your life. Please know that I (as well as I'm sure all your friends and family) care deeply about you and want to support you in anyway we can. I love you girl! (by the way, I dropped my phone in the bathtub last night and my new phone will not arrive until tomorrow). Love and miss you and you still brighten my world and make me laugh!


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