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The Mental Health Consequences of Living With Parkinsonism

I have Parkinsonism, which is exactly like Parkinson’s — but my physicians aren’t sure if it will progress or stay idling exactly where it is right now. 

My symptoms are the same and are believed to be caused by a rare movement disorder called dopa-responsive dystonia. I still take Parkinson’s medication four to five times per day to keep me from turning into the Tin Man and freezing up. Also, it helps my muscles, finger and toes from cramping up. I sometimes need to take extra medication depending on my exertion levels. That exertion is determined by a big troll that follows me wherever I go. It pulls me down onto the couch handcuffed to it each day. That troll is named “Apathy,” and you can’t find it taking jabs on Twitter. This troll is a looming creature that likes to envelope its prey in a gray covering, filling limbs with cement and brains with sand. 

Apathy is one of the most devastating parts of Parkinsonism. It is insidious and overbearing. Apathy has a way of taking your life force and draining it down like a cheap battery. You start to have chronic daydreams of being the Energizer Bunny and living your old life, but the person you used to be has been sucked out and all that is left is fatigue. Fatigue and the feeling of “meh.” It is hard to convey apathy to someone who has never experienced it. The best way would be to think about a situation where you were the least motivated in your life. Now, magnify that by 100. 

Apathy wreaks havoc on your mental health because with the troll, Apathy, comes its twin, Guilt. Guilt is there with Apathy and it sits by your feet, so when you do finally get up off the couch, it trips you up.  Guilt makes you feel useless, it strips away your dignity and gnaws at your sense of self. When you add these two together, you get depression. Depression is the byproduct of apathy or it can be the cause. It is hard to tease this one out because one of the causes of Parkinson’s disease is believed to be lack of dopamine and dopamine is the “feel good” neurotransmitter that helps keep our brains vibrant and humming along. Low dopamine means low motivation, low motivation means apathy, apathy means low motivation, low motivation means depression, depression means apathy… do you see the vicious cycle here?

Please understand that if you have a friend, family member, co-worker, anyone that you know who has Parkinsonism or Parkinson’s and they cancel plans or they aren’t motivated like you, it is not in their control. Each day we are fighting an internal war. This is one of the most devastating parts of Parkinsonism and has detrimental effects on our mental health. Exercise can and does help with apathy, but you have to break free from it to exercise and there we are again back at the vicious circle. But do not give up. Try and push yourself each day to do small, attainable goals. This will build your sense of self-efficacy and loosen Apathy’s hold. Most importantly, remember this is not your fault and kick guilt to the curb. 

Getty image via Ponomariova_Maria

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