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.

This Is What Young Onset PD Can Look Like

Not so many years ago, I was taking 27 pills a day to curb my Parkinson’s symptoms. That number didn’t include the supplements that I was advised to take along with my medication. You take some of the pills to mask the symptoms and you take the others to combat the symptoms caused by the pills that are aiding in making life a bit ‘easier’. That is some 700+ pills a month. Over 700 pills to help you stop shaking so much, to keep your mood somewhat elevated, to ease the physical pain that no one else knows is there, for aiding in the reduction of rigidity in your muscles, and more. This is what PD (Parkinson’s disease) can look like.

My symptoms, when going through my medical history with my Movement Disorder Specialist (EVERY PD patient needs one of these, if at all possible) over the years, he discovered that my journey with PD began way back in high school. Yes, that time of playing in the band at Friday night football games and Thursday night basketball games and wondering why I felt like I was trembling inside while sitting on the bleachers or marching on the field or studying for exams or whenever they (the tremors) felt like making themselves known.

Up to 44% of those with PD have experienced internal tremors. This is also what YOPD can look like. In my early 20’s the tremors continued and I started having gut troubles. I didn’t think much of it, but looking back on my medical history my doctor felt confident tthat PD was playing a quiet role way back when.

Fiona MacDonald of Science Alert says, “Researchers have noticed that people with Parkinson’s often report…digestive problems, up to 10 years before they notice tremors. There’s also evidence that people with Parkinson’s disease have different gut bacteria to other healthy adults.” This is also what PD can look like – but you can’t see it.

I began reading through my journals (kept from way back when) and began to see my symptoms actually did begin in high school. But they were subtle. They were unpronounced, minimal, silent, unassuming. There was some rigidity. Internal tremors. Gut problems. Not much but enough to put a connection to. This is what Young Onset Parkinson’s Disease can feel like.

When I was 32, I was misdiagnosed with Lupus and medicated with pills that didn’t make a difference. This is not uncommon.

I visited my regular doctor for twitching in my fingers and shaking in my hands, the right one most predominantly. I was 44 by then. I knew something was wrong. She sent me to a neurologist. I didn’t like his diagnosis nor his bedside manner so I found a Movement Disorder Specialist (MDS). His diagnosis was the same but his bedside manner much better than the neurologist, so I stayed with him.

For the sake of pity, I often don’t let people know how I’m really feeling. People treat you different when they know you have a disease. I don’t necessarily want to be treated different. My heart is still beating. I am living. I have too many weeds yet to pull, too many roses still to prune. I have grandchildren to watch grow and (hopefully!) more to be held. I have things to paint, to fix, and to make. I have birthday cakes to bake, popsicles to slurp, and summer days made for catching ladybugs. I don’t have time to wallow in a sea of sorrow over a disease I have but would rather not. But – since I do – I recognize that there are times (and they are increasing in number) when it’s okay to be treated different and need help. Really okay, because…

that’s what PD can look like.

Bringing Awareness to Something You’d Just as Soon Forget

Some  people think Parkinson’s disease is a movement disorder and they would be correct. Others would say it is a disease that affects more than movement and they would be right. Some say it starts with a tremor and that is likely. Some say it starts with stiffness and that is a possibility but did you know the first symptom that is often overlooked and undertreated is depression?

April is Parkinson’s Awareness month and with that comes a responsibility to make aware the effects of this disease to the community at large by those affected by it. If people wtih Parkinson’s disease (PD) or people who know someone with PD don’t bring an awareness to this debilitating disease, no one else will. If it’s not important to make known the importance of finding a cure with those affected by PD, it won’t be important to anyone else.

PD can take many forms. It can begin with depression, as stated above, include tremors, dystonia (a cramping and tightening of the fingers, feet, neck, and/or other parts of the body. The Parkinson’s patient can experience dyskenesia – involuntary flailing about movements. These are the signs/symptoms that most people generally associate this diease with, but that is becasuse these are the symptoms of having Parkinson’s that are visible. Other signs that are not as commonly known and have been associated with having Parkinson’s disease include losing the ability to smell, uncontrolled drooling, a softening of the voice, walking as if you are dragging your foot, a shuffled walk, tripping/falling, and more.

Parkinson’s disease is also known as an invisible diease becasuse there are many other symptoms that are found with having PD. Along with the visible signs, the invisible signs take just as strong a toll on the body, both physcially and mentally. These invisible signs can include severe back and neck pain, migraine-like headaches, a tightening of the muscles, a change in handwriting quality, an expressionless face, and also depression, as mentioned above.

Someone can have all the symptoms associated with PD, some of the symptoms, and/or some sympotms can change or disappear. PD mimicks so many other diseases, such as Lupus and Multiple Sclerosis that it often makes it difficult to properly diagnose and often takes a neurologist who speciaizes in movement disorders to make a correct diagnosis. This is especially true with people who are experiencing symptoms at an age uncommon to those riddled with PD (the elderly).  This age group of people – those who are diagnosed under the age of 60 – are known as patients with Young Onset Parkinson’s disease (YOPD) and the number of those being diagnosed with YOPD is increasing daily. What was once known as an “old people’s disease” is becoming more common with those under the age of 50.

There are several organizations with resources readily available for the asking. These include the Michael J Fox Foundation (michaeljfox.org), the Natioinal Pakrinson’s Foundation (parkinson.org), and the American Parkinson’s Disease Association (apdaparkinson.org). In Oregon, the Parkinson’s Resources of Oregon (parkinsonsresources.org) is available to answer quesitons regarding PD and also has much informatioin available to the public as well.

PD doesn’t play favorites. It does not take age into account, gender, or race. It can affect anyone, at any time. It can advance quickly or it can progress slowly. The cause and the cure is still unknown, which is why bringing awareness to this disease is so important. If I (now 55 and having had PD for 24 years) don’t think it important in bringing awareness to this debilitating disease, I can’t expect anyone else to think it important.

Journeying with you,

Sherri