The Arrows of God

    Hollyhock LoveHollyhock Love

The other day a friend who also has Parkinson’s disease (PD) put up a post (that I’m fairly certain stemmed from her personal experience of how people react/relate to her in her dealings with ‘our’ disease) on Faebook.

She said having PD changes her personality, her thinking, and her decision-making skills. She said she liked her old personality. How true this statement is for people having to deal with this little monster. Yes indeed, we would love to have our ‘old’ personalities back, for sure.

She said that hEric PD causes anxiety and depression. I can whole-heartedly relate to this statement.

She said that she appreciates the kindness of others when they hear things that should be obvious [and understandable] come out of her mouth. She appreciates their kindness when they see her do things that may seem dumb, say something backwards, or not know how to answer a sincere, “How are you?” Again, I can relate.

For this type of disease – a brain disease – she does ‘one day at a time’. It’s a brain disease. Not like the flu where you can hopefully sleep it away. Not like a cold that you might be able to sneeze or cough it away. It is a disease of the brain which is intolerable often, undeniably unpredictable at times, greatly misunderstood, and sadly – incurable. It is no secret that the public, by and large, is uneducated, misinformed, and unknowledgeable about Parkinson’s disease.

If you asked someone what Parkinson’s disease is, most people would say, “Isn’t that where you shake a lot – like Michael J. Fox?”

Yes. And no.

Some shake (with tremors) and some (although much lower in number) do not shake at all. Some shake (like Michael J. Fox has been seen to do) on a greater scale, some much less. But it doesn’t start or stop there. There are many more symptoms a person with PD deals with. Visible and many more that are invisible.

Along with the things my friend mentions, you can experience some level of forgetfulness and confusion, as eluded to by her comment in regards to needing help with her DVD player. Now, given that DVD players are naturally frustrating (for me, at least), add that confusion to a person with Parkinson’s disease and you have a major melt-down about to occur, especially if that aforementioned person, with the aforementioned forthcoming possible melt-down has missed one or more of their much needed anti-depressant drug. This can only serve to intensify the forgetfulness and confusion.

I know about this – the forgetfulness and the confusion – because I know this: Parkinson’s disease. As my friend said in her post, “I can’t even work my DVD and my son put on labels with arrows to show me how.”

Her son “put[s] on labels with arrows to show [her] how to” work her DVD. I’m afraid labels wouldn’t be enough for me. I need a full-time techie to serve in that area.

But the arrows – I can follow arrows. I’m really good at following arrows and when my friend wrote that her son labels her DVD player not just with’labels’ but arrows, I had an epiphany…

God has a set of arrows for each one of us. He marks our path, whether we would choose that path or not, with His arrows. And the path marked with the arrows of God are arrows that are leading us out of this world. The paths we are on are leading us home. To a better place. The paths are not marked with maps that remind us of navigating a DVD player, but they are marked with arrows that are easy to follow and as long as we follow them and do not turn to the left or to the right, make a U-Turn or plant ourselves in the middle of the road out of defiance, we are going to male it home. The One who is ushering us out of this world with endless mercy and unending grace is the same One who is waiting to usher in into eternity. I don’t know about you, but that encourages me and gives me great hope.

All we have to do…

…is follow His arrows.

Parkinson’s Disease: Can you really call it INVISIBLE?

©2011 Sherri Woodbridge
©2011 Sherri Woodbridge

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.

  • Grief.
  • Depression.
  • Despair.

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.

Joy.

JOY?!?

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.

One of ‘Those’ People

About a week ago, I met one of my neighbors.  They travel a lot in their motor home and had just pulled in from a long stretch. Gone all winter to Arizona and for the summer, they were camp hosts over at Crater Lake.  So, I wasn’t being ‘un-neighborly’.  They are just never there.

I had gone to the mailbox and on the way back my neighbor was standing at the back of his motor home with two other older fellows.  They were chit-chatting or as some say, ‘shooting the breeze’.

I had been singing as I walked and brought it down to humming to myself as I approached the threesome and was about to walk by when my neighbor broke the conversation he was having with his two friends in order to tell me to “Lighten up.  Things aren’t that bad.”

Oh great.  Another one of those people.  Now, I have nothing against ‘those’ people.  I’m not even sure what I mean by ‘those’ people, except to say, they don’t get it.

Some people measure happiness and joy by the smile across someone’s face.  If they’re smiling, they muse be doing great and yet, how many times have you put on a smile for the crowds, meanwhile inside, your world is falling apart?  But – it doesn’t work the same in reverse order.  If you look down, people assume you are down.  They aren’t familiar with the effects of Parkinson’s disease (PD).

Many think that PD is simply an illness that makes a person shake and, it does do that.  However, that’s only the tip of the iceberg.  Did you (anyone unfamiliar with PD) know that Parkinson’s disease can include (but is most certainly not in the least bit limited to):

  • loss of smell
  • loss of balance
  • stumbling
  • depression
  • fatigue
  • dry eyes
  • lack of muscle control
  • tremors
  • severe pain
  • stiffness? (— to name just a few symptoms.)

So, when my neighbor from across the street interrupted his friends to make his comment about me putting a smile on my face and added, “Now, isn’t that better?,” I was frustrated because I was happy.

So often we think that unless the other person is smiling, something’s wrong.  We assume that something is troubling them.  People with PD have a disadvantage in this area – being able to show on the outside, how they feel on the inside.  A person with Parkinson’s disease often loses his or her smile, as the facial muscles in a PD patient has caused their smile to tighten up and… disappear.  Many people who know nothing about Parkinson’s disease don’t understand that and end up yelling at others to put a smile on their face, if one is missing.  If that weren’t enough, they follow it up with, “Now, isn’t that better?”

Being happy doesn’t mean you walk around with a smile plastered on your face. Many people are smiling on the outside whole dying on the inside.  The next time you see someone who looks lonely, sad, down – ask them how they’re doing.  You might be surprised at their reaction.

Journeying with you,

Sherri