Let’s Get Started

I’m an expert in Parkinson’s… I have it. I know all about the disease and all of the symptoms. Wait, what? Everyone experiences it differently? Well that’s just dumb. Honestly, the more people I talk to with the disease, the less I know about it. Think about it. We’re all individuals, with individual lives. How could anyone claim to know anything about Parkinson’s without knowing everyone with Parkinson’s? Parkinson’s is too confusing. Someone should write an angry letter. To whom, and to where is anyone’s guess.

Often I hear about the Parkinson’s community in which I am a part of, but like any community it is diverse. Diverse in personalities, and diverse in the experiences with the disease. Since the date for the cure is unknown at this time, it would be nice to treat the diversity in symptoms until we all have a standard Parkinson’s with which we live with. It’s insane how many symptoms are associated with the disease. They’re all guest who make themselves at home, just because we said to make yourself at home. I was just being polite, get your feet off my coffee table! I don’t even like you, why are you here? Look at the time symptoms, you don’t have to leave, but you can’t stay here.

Sometimes I talk to people with Parkinson’s and I wonder if we even have the same disease? I have a resting tremor in my right hand, but some people don’t even have a tremor. You need slowness of movement and one of the other motor symptoms to be diagnosed with Parkinson’s. We all have one thing in common. We’re all turtles from time to time. After that, it’s a bag of mixed nuts. Some of us get a little nutty from the disease, others not so much. Don’t get me started on the treatment. Some people get a little horny, some just get crazy into exercise or an activity. Look at the list of non-motor symptoms and side effects from the disease and treatment. It’s no wonder why so many people get depressed. Everyone lives with it differently. You feel alone sometimes, even if you’re not alone.

Lately my face has been oily, which is a non-motor symptom of Parkinson’s. I’m waiting for Halliburton to knock on my door so they can frack me. Some people don’t experience that. I have trouble sleeping at night, others sleep like a baby. I suffer from depression due to treatment for multiple neurological illnesses, others are as happy as a pig in shit. I cycle, when others are confined to a wheelchair. I’m young, they’re old. I experience dyskinesia on a low dose of Sinemet, while others are on a high dose for a long period of time. You feel everything, I feel nothing. I’m like an old iPhone battery that constantly needs recharging. You’re the latest model. We are all different, and it is frustrating.

No matter. We all have Parkinson’s and that’s our common bond. That’s what brings completely different people from all over the globe together. The race isn’t for a cure, or for the latest medication or treatment, it’s for the ability for all of us to accept that we don’t know anything about Parkinson’s until we know and accept everyone with their own version of Parkinson’s. It seems simple, but caring for others above yourself is anything but simple. Perhaps the cure to living with Parkinson’s is giving everyone with Parkinson’s the benefit of the doubt. Accepting their Parkinson’s as if it were your own. It’s not a straight sprint, but a tough mudder that is all over the place. You’ll get a little dirty, but in the end you and me, will truly understand PD(shameless plug). So, what do you say? Let’s get started.