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."

"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?