You may not be able to see it, notice it. But, be sure of this – even though you may not be able to see it or notice it, but if you’ve got Parkinson’s disease, it’s anything but invisible.
I can’t tell you how many people with Parkinson’s disease (PD) say that (when gathered within some sort of PD group), they can’t stand it when they tell someone they have PD and the response is, “You don’t look like you have Parkinson’s disease.” The thing is, for as much as they can’t stand to hear someone make that remark, they can be just as guilty for saying it.
While I was attending the 2016 World Parkinson Congress in Portland this past September, I had several people make that comment to me and except for one (and she was married to a man with it). You have two reactions when that situation occurs: you are somewhat glad you present yourself as ‘Parkinson free’ and on the other hand, you feel like others think you’re faking it.
What, exactly, is Parkinson’s disease? What is PD supposed to look like? Flailing and shaking – acting like you’re drunk as you walk down the street? Parkinson’s disease can look like whatever it feels like looking like and it goes much, much further than that. It doesn’t limit itself to our imaginations of what this disease should or should not be, what it is or it isn’t. It can expand the borders of our minds or confine them.
And – Parkinson’s can be a concealed disease, visible to no one but the one who has it. For a while, anyhow.
Severe headaches, vision problems, swallowing problems, speaking problems, choking problems, drooling problems, smiling/facial expression problems, neck stiffness problems…
Did you notice anything? These are all symptoms of PD from the neck up and even this is not an all inclusive list for that area. Many people are surprised to hear such a list but then begin to realize tha.maybe it’s true. Maybe PD can be considered an invisible disease simply because they didn’t know it could envelope so many different areas.
When my symptoms began to emerge (tremors, for example) and become more obvious to the outside world, if I was standing I would either fold my arms together or I would stand with my arms at my sides and clench my fists until the tremors would stop. If I was sitting, I would sit on my hands. This became such a habit of ‘concealing’ my disease that I didn’t even know I was doing it. It took my doctor to point it out to me.
Among the symptoms (either from the neck up or from the neck down), that can plague a person with PD, there are a few which get completely ignored because they are so often, hidden so well.
There is grief for those things lost and for the things that may be lost. This isn’t negative thinking in regards to things yet to come. It is a case of being realistic.
There is depression either from the disease itself (an actual symptom of PD) or from life itself, which in turn can magnify the depression caused by the disease.
There is despair. A loss of hope that things may improve. This can be easy to experience when you are continually reminded by others (or by yourself)that things will not improve, there is no cure, and grief can be your constant companion.
The symptoms may differ slightly to greatly when comparing different chronic illnesses, but the ‘ignored’ symptoms can be seen across the board in Diabetes, Multiple Sclerosis, Alzheimer’s and more. They can be included in an extensive list of diseases that are able and do change the course of one’s life. Whether slowly or overnight.
But, I think that there is one symptom that is unique to people with PD in terms of being invisible.
Diabetes, MS, Alzheimer’s and others cannot be blamed for taking away your smile. Not literally. We can allow anything to rob us of joy, to rob us of a reason to smile. But, only PD (as I know it) can literally take your smile away, causing you to appear to others as sad, depressed, sorrowful, and/or full of despair. You aren’t but others think you are. This is due to the face muscles losing their ability to work properly resulting in the inability to smile. In turn, you can feel one way and actually appear another. People don’t see the joy because it’s hiding in the muscles that are concealing your smile.
I have honestly heard the following comments by strangers and friends/family, with or without PD alike:
– Don’t look so sad! (I include an exclamation because they did in their delivery.
– What’s wrong?
– You look like your mother died! (Again… delivery.)
– Why do you look so depressed?
– Cheer up. Things can’t be that bad.
I have learned (from having PD) that people with the disease can appear to be ‘drunk’, so when you’re about to judge someone who is acting ‘different’ – stop.
I have learned (from having PD) that not only is each day different, but one moment to the next can change, especially if your’e medications are wearing off. You can be running with your grandson one moment and tripping and falling the next. Yes, that’s how fast it can sometimes happen.
I have learned (from having PD) that if a person is not smiling, it doesn’t mean they are depressed, sad, or the like. They may very well be in a better state of mind than you are. So about making those mood observations above – just don’t.
Instead, have a seat. Sit and talk to me and tell me about your day. Tell me about your grandchildren. Ask me about the flowers I planted yesterday or the birds I saw. Tell me about my family. I will more than likely smile. Maybe cry, depending on what comes up. But I can guarantee, the joy will be there just the same.