Person on blankets and sheets holding arm over head with eyes open in fear.

Worrying About Parkinson's: What Keeps Me Awake At Night?

I often worry about my Parkinson’s. There are things that sit deep inside my brain that whenever I’m feeling low, tired, or when I’m lying awake at night - that's when they rear their ugly heads. As a general rule, I try not to worry about things I can’t change, but these ugly brain occupying monsters didn’t obviously receive that memo.

Six fears about the future with Parkinson's

I reached out to the community to see if the things that frighten me about the future also weigh on them. The fears seem to fit into 6 categories:

Fear 1: Being alone

"Fear of dying alone."

"To end alone and unable to communicate."

Fear 2: Being reliant on others and a burden

"That I become completely dependent on 24x7 full-time care and am incapacitated."

"It scares me the thought of having my family care for me, as I just want to do that for them."

"Being incapable of doing things for myself, being reliant on others for help. I've always been fiercely independent, strong, and in control. I can't bear the thought of this trickling away. It already is."

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"Being helpless, wheelchair-bound, and a burden on my kids."

"Knowing how I could end up, being a burden to my family and not being able to cuddle my grandchildren."

Fear 3: Being absent

"That I will go for DBS surgery and either not survive or be left with incapacitating effects leaving me unable to work or talk. I don’t want to leave my kid with no parent at such a young age. It terrifies me."

"Not being able to be around for my kids."

Fear 4: Being unfulfilled

"Wondering which is going to run out first. Money or my quality of life."

"Not getting to do things I want before my quality of life deteriorates because money isn't available now."

"Losing the person I used to be and hoped to become."

"Losing my job."

Fear 5: Being in the dark

"Unknown progression."

"Not knowing what the future holds."

Fear 6: Being more susceptible to dementia

"That I will develop dementia."

"Increased likelihood of dementia."

And so what's my fear?

And so I guess now it’s my turn. I’m scared of being single until I die. My last serious relationship ended over 2 years ago, and I haven’t met anyone since that can handle what I’m dealing with. I hold on to a tiny thread of hope that someone out there can so I won’t have to face every day as a lone wolf. I want to be part of a pair again. I want there to be someone who is my person who I come home to. I’m getting the sinking feeling that might be too much to ask.

By writing about this, I don’t mean to scare or upset people or impose fear on those who don’t feel like this yet. But I very much believe that an unspoken fear can grow and grow until it becomes all-consuming. Simply by reading these fears and knowing that I’m not alone lightens the burden and sharing mine gave it less power in my headspace.

How to dampen these fears

I believe the key to dampening fears is to:

  • Connect with people going through the condition too. They get it and probably feel the same.
  • Voice them to someone. Family members aren’t always the best choice, but maybe someone a little more removed, a friend or health professional for instance. Even writing them down can ease the space they occupy in your mind.
  • Look after yourself and try to still your mind. Yoga and meditation can help clear your mind for a short time and changing thought behaviour patterns can really help your brain stop replaying the same worries on a loop.

What are your worries about your Parkinson's disease?

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

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