You and PD: What are you afraid of?

Photo by Sherri Woodbridge

When people with Parkinson’s disease were asked: Are you scared of your future with PD, they replied with a resounding yes, followed by what they feared the most:

  • Losing their driver’s licenses.
  • Losing their independence
  • Having to depend on others.
  • Facing the unknowns and what-ifs.
  • Having to ask for help.
  • Knowing what their family/caregiver(s) will have to handle.
  • Having no one around to help.

The most popular advice in response to these fears: Keep a positive attitude.

  • Other responses:
  • Never give up.
  • Listen to your doctor.
  • Learn what you can about Parkinson’s.

There are so many other fears that this list doesn’t even begin to name them all. Fear of choking on a raisin, a piece of chicken, or a glass of milk. Eating – in general. Fear of drooling so much you’ll need a wet/dry vac to suck it up. Fear of being unable to be social anymore because though your friends think you’ve invented some snazzy new dance steps with the way you shake, you know better. Fear of dementia and Parkinson’s at the same time and not being able to remember what you can’t remember. Fear of losing your voice and no one will be able to hear you complain ever again.

The list could possibly be endless, but if I were trying to think of every possibility of things to fear because I now have PD, I’d be ignoring the most popular piece of advice in response to those fears: Keep a positive attitude.

I know when I am down, the most likely way to keep me there is for me to stay focused on the negative. Thinking about all that drool and dementia that hasn’t happened yet (and may never). You can’t predict the future because it is different for each of us with PD. Perhaps two journeys begin the same, but one may go straight on a fairly smooth, pleasant path, while the other takes a sharp right up a steep hillside.

We know the possibilities, the likelihood of what could happen as Parkinson’s progresses. But we must keep in mind that possible is not a definite term. You can’t pinpoint the definite in possible. You can only make a guess. We cannot predict the future. Not people with Parkinson’s, not caregivers, not doctors nor nurses nor wizards.

So, if we don’t know what’s going to happen, why do we worry about what might?

Here’s a little story to illustrate my point:

Olaf was a stout little man with a disease most would consider dreadful. He would shake when he wanted to be still and he’d talk quietly when he wanted to be heard. Olaf also lived with a lot of pain and sometimes his fingers would suddenly twist into a mess. It felt as if they were in a vice and someone was trying to straighten and stretch them to no avail. Other times, he seemed to feel fairly good. No tripping, no falling or shuffling that day. No drooling, nor stammering for the right words. No pain.

But Olaf had a problem. He never acknowledged the fairly good days. He’d grown so accustomed to listening to the news each morning and that, to his detriment, was mistake No. 1. It only left him feeling more despondent, hopeless, and fearful. A bad combination.

His friends and family asked him to accompany them on walks, which he nonchalantly declined, promising maybe tomorrow. They got him a dog to lift his spirits and help him with his balance. But he never got out of his chair and the dog got tired of just sitting at home and left.

Olaf mumbled to himself throughout the day about his predicament. He didn’t like feeling alone without help to get through the day. But he also didn’t like asking for help.

He didn’t want to lose his independence, he told himself and he convinced himself that asking for help would do that.

He didn’t realize that by not asking for help, he was losing more of his independence because he wasn’t able to do as much as he would be able to had he someone to call upon.

And he did have others to call upon. But he wouldn’t.

It was a vicious cycle.

And so Olaf sat, thinking about the unknowns of his future. Wondering about his demise. It was not uplifting to dwell upon, but he had grown accustomed to such miseries.

Would he choke on the spaghetti that Meals-on-Wheels delivered promptly at 4:30 each afternoon? Would he trip over the kitchen rug and lay there to drown in his own drool because no one would be coming to care for him? Would he become so rigid that when he went to stand one day, he wouldn’t be able to, because the only exercise he got was walking to the bathroom twice each day between reruns of “I Love Lucy”?

Olaf was going to change. He was determined. No more of this sitting around and watching himself fade away. He was going to fight.

He got up slowly but with great determination and walked to the front door and carefully down the front steps. He was going to find his dog and walk him every day. But first, he thought, my keys! He had forgotten to lock the door.

As he turned to go back to the house, he was hit and run over by the paper boy. As he floated off into clouds to his new life, he thought to himself, “I wish I hadn’t worried so much about things that never did happen.”

See what I mean?

When God says “Wait”

Sometimes life is hard to understand. Sometimes it is difficult to understand why God says ‘Wait‘.

I’m not sure I like that word. Actually, I am sure. I do not like the word wait. I’d rather hear the word ‘no’ so that I can at least move on. But ‘wait‘? You’re stuck in limbo. You have to take a seat, sit down, trust and… wait.

I’m a pretty patient person. I don’t run red lights (intentionally). I don’t try and finish other people’s sentences. But when it comes to certain things, I find my patience running on low.

My family found itself in a interesting predicament several years back. I am on disability, due to my Parkinson’s disease. My husband was winding down his ministry where he had served for over five years due to the lack of support we had and we both felt it was time to move on. He was trying, unsuccessfully, to find a job.

My oldest son was trying to find a job in Oregon, my daughter was trying to find a job in southern California, and my youngest made a job for himself in the summer doing yard maintenance. But sooner, rather than later, winter hit and he was no longer able to do that and found himself looking for a job, anywhere, alongside the rest of his family.

So while we waited – while they waited for a job and I waited for God to answer my prayers – they had interviews and others were chosen to occupy the positions they would have liked to fill.

And I didn’t understand.

They were (and still are) all hard workers. They were (and still are) all honest. They were all responsible and would have made great employees wherever they were employed. But they were not getting jobs. They continued to fill out applications and make phone calls and knock on doors.

One day my daughter received an email that she didn’t get the job she really was hoping to get. My husband relayed the message to me. Again, I didn’t understand. We believed in a God we could not see, were trying to hold onto a faith that often faltered (speaking for myself), and attempted to remain hopeful while all around us things would appear to be hopeless.

I sat on the stairs and cried out to the Lord, “I just don’t understand. I was on my knees today asking You to bring them jobs and again you said no.”

Now, first of all – a side note on my prayer…

Do I think that just because I prayed my contrite little prayer that it is God’s duty that He answer on that particular day? We are supposed to pray in faith, believing that He will answer. So yes, I believed He would but it also is not His obligation to do my bidding.

I also wanted the best for each of my unemployed family members, but I didn’t want God to answer for my sake if it wasn’t for their good and their best.

Secondly, He didn’t say no, He said… wait.

There was that word again.

In Psalm 37, it says to ‘Trust in the Lord and do good; dwell in the land and enjoy safe pasture. Delight yourself in the Lord and he will give you the desires of your heart. Commit your way to the Lord; trust in him and he will do this: He will make your righteousness shine like the dawn, the justice of your cause like the noonday sun. Be still before the Lord and wait patiently for him…’

Trust in the Lord.
Do good.
Dwell in the land.
Delight in the Lord.
Commit your way to Him.
Trust in Him.
Be still.
Wait patiently.

Trust is commanded twice in this passage. Perhaps it’s because we have a tendency to falter. At least I do.

Be still. (Easy to do if we’re trusting.)

And then, the whopper… wait patiently.

I found it rather comical when looking up the word ‘wait’ in the Thesaurus. Two phrases that I found to describe it were: hang on and hang around. I had this picture of God saying, “Hang around. The best is yet to come.” But we’re not just to merely hang around, but to hang around patiently. In other words, without complaint.

 

The phone rang and it was my daughter. I didn’t know how I was going to cheer her up when I myself was a wreck. I answered.

“Hey mama,” she greeted cheerfully.

She’s probably trying to disguise her disappointment, I thought.

Being careful not to bring it up unless she did, I said, “So… how’s your day going?”

“Good.” Same cheerfulness. She’s trying to not be down.

“Did dad tell you I didn’t get the job?” she asked.

Here we go. Be strong, mom. Your daughter needs encouragement.

“Yes. I’m so sorry,” I said and almost before I could finish, she responded.

“I’m not. I’ve been praying that God won’t give me a job if it isn’t His best for me and this wasn’t it. He’s got something better.”

l had a lump in my throat. My daughter was just rejected from an employment opportunity that she really wanted and she’s encouraging me.

She went on to say that she had peace about ‘their’ decision. She wondered how God was going to take care of all her school bills, but she knew He would. She wondered where He would send her, but she knew He would. She wondered why it was taking so long for Him to provide, but she knew He’d come through.

With an unshakeable faith, she was trusting in a God she could not see. She was dwelling safely and doing good, committing her plans to His will.

There is a song by Jeremy Camp that is somewhat worded as follows:

Scattered words and empty thoughts
seem to pour from my heart.

I’ve never felt so torn before and it seems
I don’t know where to start.

But its now that I feel your grace fall like rain
from every fingertip, washing away my pain.

Though questions still fog up my mind and even when answers slowly unwind,
it’s my heart I see you prepare.

And again, I feel your grace fall like rain,
from every fingertip washing away my pain .

The only place I can go is into your arms, where in brokenness,
I throw to you my feeble prayers.

I can see that this was your will for me.
Help me to know that you are near.

I still believe in your faithfulness.
I still believe in your truth.

I still believe in your holy word and even when I can’t see,

I still believe.

 

That song came to my mind after I got off of the phone with her.

Even when I can’t see – when I don’t understand… I still believe.

And so I will wait. Still and again. Patiently. And in the waiting, I thank God for my daughter who could see, through the eyes of faith, that our God had something far better than I could ever understand.