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My Parkinson's Journey

In which Terri shares a humorous look at her journey with Parkinson's disease and Dystonia:

For me, illness and health are not opposites but exist together. Everyone has something that is challenging to them. Mine just simply has a recognizable name. My life will take a different path because of this but that's okay. Everyone has changes in their lives that create their path.  I'm learning how to enjoy whatever path I'm on.

Was that a ....? Never mind.

Terri Reinhart

There are a lot of places where dogs are allowed to visit nowadays, but hospital infusion centers are not the likeliest places to see someone in a wheelchair with a poodle on their lap. It worried me. Had I really seen this? Sure, the poodle could have been a service dog, but .. well, how many service dog poodles have we seen? I turned to my daughter. Dare I ask? 

There's a new commercial out about Parkinson's disease. It's presented as an awareness ad; awareness of the lesser known symptoms of hallucinations and delusions in Parkinson's. The ad is very emotional, and I understand because these symptoms can be frightening, but it's also stirred up quite a lot of mixed feelings within the Parkinson's community. I mean, come on! It's hard enough to feel confident socially. Now you're going to blast it to the world that we're seeing things? The ad doesn't start explaining delusions, but just the word... it doesn't sound good. 

And that's part of the problem. As soon as we hear of the possible issues that can affect our thinking, we immediately want to say, "but that's really rare. It doesn't affect most people", and by that we mean, "not me". What we also mean is, "dear God, please not me". All sorts of our culture's worst insults come to mind, especially as they're being used often by and about people in politics these days: crazy, loony, lame, insane, idiot, screw loose, mad, demented, mental, or sad. The stigma of mental illness is often more damaging than the illness itself. When there is such shame attached to any health condition, it makes it much more difficult for people to ask for help.

Okay, with this in mind, having an awareness ad about hallucinations should be a good thing, right? By the way, this ad is put out by a drug company. Oddly enough (or perhaps not so oddly), the ad doesn't mention the fact that a lot of these symptoms can be caused by certain Parkinson's drugs. There's no suggestion to have your doctor evaluate the meds you are already taking. The patient in the ad is portrayed by an actor. The sound effects and music are eerie. The whole feeling is one of sadness and fear. But they tried. They are honestly trying to bring awareness to these symptoms, the symptoms we don't want to talk about. And sell drugs. Let's be honest. They're marketing their product.

So how can we bring awareness to this type of issue without portraying the person as sad and suffering and dependent? ... without portraying these issues as a tragedy? Could we provide a somewhat more positive picture? When my able bodied friends see a commercial like this, I brace myself and get ready to hear their condolences on having this horrible, tragic illness that has obviously robbed me of having any sort of a normal life. 

Would someone like to stand up and tell me what normal is? 

On the other hand, there are those typical drug company commercials which show beautiful, cheerful, active adults swimming, climbing mountains, taking their grandchildren to the park... and hey! They are beautiful, cheerful, and active because they take this drug! All the while, of course, you hear the narrator speaking as quickly as possible describing all the possible side (ie: non-marketable) effects of this drug and all the ways it can kill you. Let's not go there.

I hallucinated once - only once that I know of. I was in a restaurant with my grandson and I watched a family come in. Someone was pushing a stroller that had a doll in it and someone else was holding a chihuahua in their arms. A couple adults took turns holding the baby doll. Why would anyone bring a chihuahua into the restaurant? And, putting the dog in the high chair? I said something to my grandson and he looked at me and laughed and said, "Grandma, you're silly!" That was my first clue that just maybe my brain was playing a few tricks on me. Will it happen again? I was relieved when I finally asked Emma about the dog I saw at the infusion center. She had seen it, too. Someone really and truly had a service poodle.

What do I need to know about hallucinations? The one I had was right after starting on new medication that gave me insomnia. I've since talked to others who've had hallucinations when taking that particular drug. My experience with hallucinations was startling, not scary. All the same, it took awhile before I told anyone about it. Had I seen this ad right after my experience, I would have totally freaked out.  

While I don't have THE answer, perhaps it's time to let a group of people with Parkinson's create these ads.

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