The Stare

It’s bound to happen. You know – that dreaded moment when a stranger can’t stop looking at you because you can’t stop wiggling. If only you could sit down and put your hands under your behind, it’s likely no one would notice. But it doesn’t matter – you’ve been found out. You can respond to this moment in your life in a positive way, or you can get in his face and scream, “What’r you lookin’ at, dude?”

Well, it happened to me. The other day some friends took me to lunch. As we stood and waited to be seated, this man, about 50ish and also waiting to be summoned to a table of his own, just kept staring at me. Well, specifically my The arm. I was late in my meds and beginning to feel ‘off’ and it was more than obvious to those around me.

I didn’t say anything to him. Most people will just blurt it out. “What do you have?” Or better yet, “What’s wrong with you?”

So, I’m standing there, waiting. And I feel like someone is watching me and lo and behold, I’m right. Mr. Dude can’t stop watching my arm move around like a chicken with its head cut off. I usually have something on with pockets so that I can put my uncontrolled limb inside and no one is the wiser. Not this day – this day I had no pockets. I was on my own.

I’d like to tell you I walked over there and said, “I noticed you were staring as if perhaps I’ve been drinking. The fact is I have Parkinson’s Disease, like Michael J. Fox, except that I’m a girl and he’s not. If you have any questions, I’d be more than happy to answer them, Mr. Dude. Otherwise, I’d appreciate if you quit staring.”

I began clenching my hand as I find after a few seconds it relieves the tightening of the muscles enough that they let go and relax a bit.

That day, Miss Wimp let Mr. Dude’s rudeness get the best of her.

This is what I have to look forward to, I thought to myself.

The next day I went to the hardware store. I love the hardware store. I could spend the whole day in the hardware store. I was on the aisle where the lawn fertilizer is when I noticed a man standing nearby. He turned and looked at me. I kept looking to find what I had come for and I felt him look at me again and then noticed him walking toward me out of the corner of my eye.

“Have you hugged a Parkie today?” he asked inquisitively. I had my bright yellow PD shirt on with the shaky bear on the front and he read the caption outloud. “What’s a Parkie?,” he added.

“A person with Parkinson’s.” Straight and to the point.

“Oh, that makes more sense now.” He got his whatever it was and walked away.

Makes more sense? I mulled that over for a while wondering what he meant by that. Did he even know what Parkinson’s was? Was he aware that it was a disease? Did he think I was supporting the homeless people who hung around the park and was part of a campaign to make them feel loved, calling them ‘Parkies’ in the process?

Whatever he thought, he was like Mr. Dude and once again, I played Miss Wimp.

I mulled that over, too. The part of Miss Wimp. Why didn’t I say more? Am I embarrassed? Afraid? This is the conclusion I came to:

I don’t necessarily like talking about it. If your tremor’s out of control, it invites questions from well-meaning people who don’t understand. If your speech is below an auditory level, they don’t understand why you seem to insist on talking softly. I suppose I could give Mr. Dude and the hardware man the benefit of the doubt. Perhaps they do understand and they care for someone with a disability or at least know someone who does.

I try and go easy on the dudes. I use to be a dude myself (in the sense that I thought of and reacted to people with disabilities as Mr. Dude did – stared) and I’m not really a wimp, as I will talk about my disease if someone is interested in listening. But what has happened since having PD, is that now I am not afraid to go up to the person with an obvious disability and ask them questions about how they’re doing.

A few weeks ago, I was walking into the supermarket and an older gentleman was in front of me. Then he fell. A younger guy sauntered over, followed by a little older guy. I was helping the man to stand back up and it was obvious he was embarrassed. The two younger guys left as quickly as they had come. I walked the man into the store. He was shaking like crazy on his right side. I asked him if he had Parkinson’s. He said he didn’t know as he’d never been checked for it.

Keep that incident in mind while I tell you about this weeks. I’m standing in line at the grocery store and the older woman in back of me is struggling to put her groceries on the belt. When I say struggle, that doesn’t begin to describe it. She’s hardly able to grasp the items with her fingers. I began helping her as the clerk began scanning mine. She was very appreciative and I asked her if she had Parkinson’s. She didn’t know what it was.

I’ve had a lot of thoughts about those two incidences. Did they both have PD and yet, because of their ages the doctors figure there’s not a lot of options anyhow so why bring it up? I hope not. I told them both to go and get checked. If it is PD, whatever their doctors can do for them may make the last part of their lives a little bit easier. It’s times such as those that I feel this little monster (aka PD) has a purpose.

I guess I’m not so wimpy after all. But, I have my moments. Fortunately there’s a lot of dudes out there, so it balances out.

An Acrostic: Just What Is Parkinson’s Disease?

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Sprinkled Pink Photo by Sherri Woodbridge, 2016

Painful.

Always present. Always. Even if ‘evidence’ is not outwardly apparent.

Relentless. Mentally, physically, and emotionally.

Kin-friendly. While research shows the numbers to be close to nil for PD to be hereditary, researchers now think that about 7 or 8 percent of patients with PD have a direct genetic link.

Individualistic. No two cases are exactly alike.

Non-discrimitory. Anyone, any age, any race, any shape or size, any language, any gender, anywhere, any hair color, any time, day or night. You get the picture, right?

Shuffle-walking-causer

Oblivious to how I may want my day to go.

Not very nice. No. Not at all.

Shaker-maker

 

Drool and depression inducer

Icky, icky, icky

Stiffness and slowness creator

Enhancer of humility in so very many, many ways

Apathy-maker

Subject to dystonia and dyskinesia and great dislike by its recipient

Exactly that aforementioned above and much more!

Apathy in Parkinson’s Disease

Just what does apathy mean? Some say that the opposite of hate isn’t love, but apathy – an attitude of not caring. Miriam Webster defines it as showing little or no feeling or emotion. Spiritless. There’s little or no interest or concern. You feel:

  •  indifferent
  •  complacen
  •  disinterested
  • unconcerned

You are

  •  lukewarm
  • aloof
  • cold
  • numb
  • unemootional
  • detached
  • unfeeling
  • insensitive
  • unattentive

Ever feel that way? I highlighted the word spiritless above, because I think that sums up the whole mess.

Apathy can be pretty pathetic and discouraging when you come across it in someone. Most people who are apathetic cause you to feel frustrated by their seemingly sense of detachment and unfeeling attitude toward life. However, in a person with Parkinson’s disease, often beknownest to them what is truly happening, they don’t want to feel this way. They don’t want to feel numb, lifeless, or spiritless.

Some tend to believe that apathy and depression are one of the same. According to the Journal of Neuropsychiatry, “Apathy is defined as diminished motivation not attributable to a decreased level of consciousness, cognitive impairment, or emotional distress. Depression involves considerable emotional distress, evidenced by tearfulness, sadness, anxiety, agitation, insomnia, anorexia, feelings of worthlessness and hopelessness, and recurrent thoughts of death.” In a study conducted several years ago, doctors concluded that in Parkinson’s disease, apathy is present, but depression is more consistent with the disease. So do we ignore the sometimes and shoot for the consistent? No. It all needs to be addressed. So where do you start?

I have struggled with both aspects of these two specific non-motor symptoms. Apathy has robbed me of time. Opportunities. So has depression. Whereas apathy has left me feeling unemotional and numb, depression has left me in darkness, despair and desperation. When they have coincided with one another, it has felt like a ticking time bomb in my head and spirit. It is a scarey place to be and it is real.

  • For me, part of the apathetic feeling I had came from feeling like I didn’t know what to do next. Feeling stuck in those ‘off’ moments. Keeping a list of things I want to accomplish or need to accomplish, no matter how simple or mundane it may seem, helps to bring things back into focus. Here are some practical suggestions for those moments when you feel bound in the land of apathy (and they help for depression mode, too):Get up, take a shower, get dressed. Don’t think about how you ‘feel’. Don’t allow yourself to get distracted just be like a Nike commercial and Just Do It. Get going. And laying out your clothes the night before may sound childish, but who cares if it makes your life easier.
  • Get some exercise. Stretch. Walk. Go for a swim. If you can’t motivate yourself, ask someone to help you/keep you accountable. To pull you out of the house if they must, and drag you along until you’re going along because you now see just how much better you can feel.
  • Take your medications on time. This involves sorting them beforehand and having them ready to pop in your mouth. When you’re feeling apathetic or depressed, it is easy to just forget it becasuse unscrewing five child-proof prescription bottle caps four times a day isn’t something you’re going to feel like doing. You’ll pay for that apathetic thinking within the hour.
  • When you have things you really shouldn’t put off, do the things you hate first. That will make accomplishing your goals easier.
  • Talk to a friend. Have someone pray with you and/or for you. Having another person to share life’s struggles makes the struggle bearable.
  • Talk to your doctor. There are treatments for apathy and depression for people with Parkinson’s disease who find themselves fighting to stay sane. This disease already takes enough from us. Don’t let it take your joy and happiness, too.