Category Archives: Parkinson’s Disease

What Does God Say To Grief?

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After the winter, God ALWAYS sends the spring. ALWAYS.

We were traveling toward downtown Capitola. Gayle’s Bakery – specifically. The place in town. The place for a great Chocolatine. Ham and Cheese Croissant. Bear Claw. Raspberry and Cream Cheese Danish. All fresh. All scrumptiously delicious. The best you’ll ever taste. I now think I am very hungry…

We (my daughter Tamara and her friend and maid of honor, Ashley) had spent the day before looking at wedding dresses for my daughter, who just happens to be getting married in June to a wonderful guy – my future son in-law. My daughter was driving and Ashley was sitting in the back seat. We were making a pit stop at Gayle’s that morning before going to look at bridesmaids dresses.

As we pulled into the parking lot, my daughter and I were having one of those discussions. You know – the kind where she tells me something and I’m supposed to know about it because she’s told me before. The problem is – I have Parkinson’s disease and quite often, I have been known to forget things. I can blame it on the disease, because besides it being a movement disorder, where we loss of movement plays a major role (among so many other things I won’t go into), a person with PD can also suffer from memory loss. However, the good thing is we may not know memory loss can be an issue because we may not remember we have PD. Wouldn’t that be great for a day!

The bad thing is – everyone around you remembers what they told you (or thinks they do) and you are the one who takes the fall because it’s easy to blame a person with PD, because – not only do they question themselves constantly as to whether they remember the situation correctly or is this is just another time the other person feels a great need to be right?

Anyhow – my daughter had told me something, which I had legitimately forgotten and she wasn’t trying to be right. She put the car into park and knew when I turned my head to the side, I was trying to hide the onset of my eyes watering. Ashley got out and Tamara, my daughter, asked her to give us a few minutes, which she cheerfully agreed to and headed into a shop depicting a Paris theme – a perfect shop for exploring decorating options for the French Country theme my daughter was going for in her wedding.

Tamara turned off the engine. She was frustrated. So was I. This was supposed to be a happy day. A wonderful reason to be going to Gayle’s. To celebrate a glorious, once in a lifetime event. But I had forgotten something. Something important. I might be able to tell you what it was, but I honestly can’t remember what it was…

Now – let me back up a bit.

I have been writing on this blog – specifically targeted re: my journey with Parkinson’s disease – since 2007. I have been writing about my journey of DP, er PD (I’ve often wondered if PD is to blame for dyslexia in later stages!? – comment?) since the ripe old age of 32, when I was misdiagnosed with Lupus.

I have – or so I thought – dealt with the five, or seven, or ten (depending on how quick you want to get through them I suppose and which book of expertise you’re reading on the subject) stages of grief over this not-so-little monster. For the sake of time, here’s a summary (and believe me, this really is condensed):

The Infinite Stages of Grief…

These stages/suggestions were found while conducting a Google search on the stages of grieving. I have compiled the highlights. Some are honestly crazy in terms of how they were worded, but hey – I didn’t come up with them (and my input is italicized).

As I said earlier, there are numerous techniques/stages of grieving. My findings were that the least amount of stages begin with four and after compiling the ones I did find (and there were jumbles more), I ended with a total of 21 stages. Each stage is highlighted and what was said about them is defined below the stage title.

SHOCK & DENIAL –

You may have numbed disbelief and deny the loss. Shock provides protection and may last for weeks. “I’m fine,” is a noted response. Denial is replaced with awareness of possessions left behind after you die. (Someone really did write that.)

PAIN & GUILT -

Shock is replaced by these two emotions (pain and guilt). “It is important to fully experience the pain.” You may have guilt over things you did or didn’t do while you had time before ‘the loss’.

ANGER AND BARGAINING –

Frustration becomes anger and you want to lay the blame for your loss on someone else. Please try to control this.

“Why me?” comes into play. Due to anger issues, the individual is difficult to care for due to rage and envy. “I’ll do anything. Just get me out of this,” they say to God.

DEPRESSION, REFLECTION, LONELINESS –

About the time you’re moving on with your life, you begin to ask ‘Why me?’ In this stage, you realize the magnitude of your loss and get depressed. You isolate yourself. Focus on on the past. Feel empty. Sense despair. Feelings of “I’m so sad.”

THE UPWARD  TURN -

Calmness sets in. You are more organized. Depression begins to disappear. (And this was what stage? The upward turn? Depression is going upward?)

RECONSTRUCTION & WORKING THROUGH -

Your mind starts working again. You seek solutions to problems regardless of (and perhaps because of) your loss. Don’t try to go over it, go through it. (This stage was repeated in two different stage articles.)

ACCEPTANCE &  HOPE -

Learn to accept and deal with reality. You can never return to the “carefree, untroubled YOU that existed before this tragedy, but you will find a way…”. (How encouraging! Not.) Accept the pain. If you cannot accept it, try tolerating it.

“It’s okay.” “You’re gonna make it.” Come to terms and accept your mortality.

ACKNOWLEDGE THE IMPORTANCE AND POWER OF YOUR DIAGNOSIS -

Move through it. (Again, this step was found twice.)

HONOR YOUR GRIEF EVERY DAY -

Set up a sanctuary in-house or in nature so you may open fully to your grief for 10-20 minutes each day. (Say what?!?)

ADDRESS UNFINISHED BUSINESS -

You can address this stage however you like.

CREATE NEW LIVING PATTERNS -

Resolve to get on with your life.

EXPLORE THE DIRECTION AND QUALITY OF YOUR NEW LIFE -

This stage will bring new perspectives, directions and choices.

DON’T PRESSURE YOURSELF TO GET BACK TO NORMAL -

LET YOUR FRIENDS KNOW WHAT YOU WANT AND NEED FROM THEM -

Let them know how they can help. Meals, errands, back rubs, walking partner, checking up on you. Let them know you may be withdrawing during this time. Let them know what they do that is not supportive. Encourage them to educate themselves about what you’re going through. Remind them your grieving will take a long time.

ACKNOWLEDGE THE ANNIVERSARY OF YOUR LOSS -

Do something to commemorate the date. Go easy on yourself. You may still be depressed.

CELEBRATE THE CHANGES AND NEW PERSPECTIVES -

FIND SOMETHING TO DISTRACT YOU FROM YOUR LOSS, ESPECIALLY SOMETHING THAT WILL MAKE YOU LAUGH -

ASK YOURSELF HOW YOU ARE FEELING -

Stop from time to time throughout your day and ask this question. Get in touch with your feelings, not with what your head is telling you. Take a deep breath throughout the day and ask yourself how you are feeling. Then feel the answer. You might discover you’re feeling pretty good.

BREATHE -

There are several ways to breathe, but all require taking a breath from the diaphragm – breathing from the belly. Focus on the breath and let it bring you to the now – where relief is found. For just one moment, focus on your breath.

JOURNAL -

Don’t edit, just write. Words are powerful and will lend to healing.

LAUGH -

Balance your emotions with a ha-ha or hee-hee or a ho-ho. Even if you don’t feel like it. Create the sound of laughter. It raises your vibration. (Is that anything like shaking – as in tremors?)

I don’t think I had a problem with the denial stage. I was actually relieved to have it diagnosed correctly and begin to get some things under control. I also would say I didn’t experience the pain or guilt, unless you count an obsession of bleach to sanitize stuff and inadvertently inhaled too many fumes and fried my dopamine supply. That would be the guilt right there. I journaled and still do. I he-he and ha-ha and leave the ho-ho’s up to Santa. As far as the breathing and asking myself how I’m feeling, well – let me just say – I’ll leave that to someone else to try and please let me know how that goes for you.

And the stage pertaining to honoring your loss and/or letting your friends cater to and pamper you – well – what can I say? Send me a comment and let me know how that goes and how your friends react after you ask if you can give a copy of the scheduled back rubs you have for them to do for you.

What I haven’t mentioned yet, is the stage of anger. I’ve never really gotten upset over my diagnosis,perhaps because – perhaps again – I felt relief more than anything. But what about anger?

Back to the car in front of the French store, across from Gayle’s Bakery. Tamara and I sat in the car as she apologized for making me cry, but the thing was – and I told her so – I wasn’t crying over anything she had said or done. I was sobbing because I was angry. Angry that I had Parkinson’s disease. I didn’t say or think, “Why me?” or anything like that. My anger was focused on what this disease has taken and will only continue to take – the ability to move freely without pain or stiffness, my memory, positive state of mind, and more. I have no desire to be grateful for what it gives – shaking, restless legs, dystonia, dyskinesia, depression, and more.

“I want the old me back,” I cried. “I don’t want the me I am now.”

Tamara cried with me. “I want the old you back too.”

That didn’t really make me feel better (did she not read the stages of grief – the part about doing and saying things to help me?), but I knew what she meant.

I find it consoling that God knows what we need before we even ask. For example, when I got home that day, I turned to a page in a devotional I have and it read (paraphrased):

“Be still in My Presence, while I tell you of My Love for you. There is nothing more powerful than My Love. You are constantly aware of limitations, but there is no limit to My Love. It fills all of space, time, and eternity.

“Now you see through a glass, darkly, but someday you will see Me face-to-face.

Then you will be able to experience fully how wide and long and high and deep is My Love for you. …the knowledge of My loving Presence is so sufficient to carry you through each day.”

The same day, I was doing my regular Bible reading and picked up where I had left off…

“Do not be afraid. Stand firm and you will see the deliverance the Lord will bring you today. …the Lord will fight for you: you need only to be still.”

Coincidence? I hardly think so. One begins with ‘be still’ and the other ends with ‘be still’. While I am aware of my limitations, there is no limit to God’s love for me and His comfort and care. While I cannot see what is ahead of me, looking ahead to experiencing God fully will be sufficient to carry me through each day. Therefore, I need not fear. I need not give in to anger or the ugliness it can bring – bitterness and pain.

And then, I need not fear the future. While I am told to be still, I am not told sit and wait – I am to  – stand firm. And He will deliver me. He will fight for me. My part? To be still.

He will bring you through the grieving process. He will deliver you from the pain. The loss.

He will.

He will.

You don’t have to he-he or ha-ha or ho-ho. You don’t have to manipulate your friends or experience be in the moment and experience a breath.

All you have to do… be still.

“We find a place for what we lose.

Although we know that after such a loss

the acute stage of mourning will subside,

we also know that we shall remain inconsolable

and will never find a substitute.

No matter what may fill the gap,

even if it be filled completely,

it nevertheless remains something else”.

— Sigmund Freud (1961)

 

I Cannot Tell A Lie

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Pockets of Hope

I don’t know about you, but I find it difficult to lie. For me, I consider that a good thing. Now, I’m not saying I’ve never lied. If we’re all honest, we’ve all lied. (No pun intended.) However, consider what you are about to read and then ask yourself if you can’t lie or if… you can’t lie. Read on and you’ll understand.

In the early 1900’s, Carl Camp wrote something to the effect that Parkinson’s patients were those who worked hard and who resisted the influence of tobacco and alcohol, among other respectable traits. Because of these findings, research has been conducted to prove whether or not this is actually an accurate account. The association of PD with personality or behavioral traits have shown over again that PD patients have traits such as being productive, inflexible and passionate about whatever they do. And…they’ve also been described as being honest.

Honest how? They cannot tell a lie. Does that mean that Parkinson’s tends to target honest people? Possibly. It’s been said that certain chemical changes in the brain during the course of the disease may have something to do with it. Another study found that the change in patients was due to the disease rather than aging, and that there may be a possibility that such personality traits are common with PD brain damage.

Does that mean that patients don’t choose to tell a lie but actually find it difficult to lie, due to something beyond their control, such as causes due to changed in specific areas of the brain?

While this news may be considered a good benefit of having Parkinson’s disease, I would hope that I would be making the choice to not lie because it’s the right thing to do and not because I have PD. However, I’ll take what I can get and if PD is responsible for upstanding patients, then I’m thankful for that one good thing.

And that’s the truth.

A Thousand Words

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michael_fox

If it is true that a picture paints a thousand words, I truly believe that this is one of the best pictures that I’ve seen where that rings true for me.

This picture was taken for Time Magazine by Ben Baker. It was inserted into an article regarding Fox’s fight for research for Parkinson’s, several years back.

I was looking up articles on Fox, always fascinated with him as I watched him grow and go from Alex in the hit TV show, Family Ties,  to the star in the movie trilogy, Back to the Future to now – living and breathing a disease that changed his life forever. And mine.

Michael J Fox (MJF) was diagnosed at the age of 30 and while I was offically diagnosed with PD at the age of 45, it actually began at 31 or before, when it was misdiagnosed as Lupus, with the possibility of it “becoming a more definitive diagnosis of something else”.  I ‘waited’ years through Lupus meds and other ‘ill-definitive’ symptoms  for the correct diagnosis.

Looking at this picture of Fox, I see myself so clearly. Looking like a normal 47 year old human being, yet in a corner with a disease, you receive a diagnosis and you’ve made a drastic turn in the path of your life that was unexpected. You are young and yet you feel so much older than you look and – at the same time, you can look so much older than you feel.

Michael’s hand holds him balanced as he sits on the floor. As I look at his hand, I see stiffness, rigidity and a hand that has a mind of its own. It looks like a hand that has been a victim of a stoke to me, but as far as I know, he hasn’t had one of those. He has Parkinsons Disease and his hand looks like mine feels.

I sometimes feel lost in a corner, lost in the world with a disease I’m not quite sure what to do with . A disease that leaves me sometimes wanting to hide in a hole. Tired, hurting, uncertain – wanting to find refuge where someone might understand, at least for supports sake and not pity. I am looking for a corner where a friend might be found.

I look at this picture of Michael and I see strength and determination. Qualities I hope to possess. The quality of strength that endures and fights and a determination that presses on and never quits or gives up. A calm and gentleness that says “I understand” and determines that to quit will never be an option.

And yet, the tiredness that comes with PD is obviously evident in this photograph. A tiredness that says the pain is real. The medications are tiring. The fight is draining.

The good, the bad, the ugly. It’s all there. In that picture. The picture of a thousand thoughts. A thousand feelings. A thousand words. A thousand hopes.

Wonderfully Difficult Times

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print-6-closer-webToday I was reminded of a very difficult time in my life, thanks to a dear PD’er.

It was the best of times and it was the worst of times.

The worst of times… My life was literally falling apart. Physcially, the doctors were trying to decide if I had MS, RA, a brain tumor or Lupus. Something was causing the optic nerve in my eye to hemmorage and they were baffled. The choices were non-inviting. It became a waiting game.

My three children were all under the age of 8, I was working and for some reason that I could feel in my gut yet couldn’t identify, other areas of my life were falling apart. The agony lasted for 15 years.

I was weak and impressionable and I trusted everyone. I learned that the only one you can trust one hundred percent of the time is the Lord.

Enter, the best of times…

Due to my ongoing circumstances, I learned to lean on God as never before and it was during that time that He became more than the Creator of the heavens and earth – He became my constant companion, my dearest friend, my daddy. In the midst of the pain, the confusion, the heartache – He was enough. On days when the storms thundered and the clouds rained misery, He gave me grace to keep walking forward and strength to do it well. He gave me hope and a peace that truly lived up to His promise of going beyond understanding. It became the best of times in my walk with a mighty God.

I am in another season of trials and tribulations and due to the prompting of what has become a dear friend here, I am opening the private pages of my journal to give you a glimpse of what the last week has been like., a mere snippet of the past year. Because, I was reminded that I don’t walk this road alone as we have others in our lives who will walk with us, although sometimes they have to be made aware of our needs. But more importantly, we have a heavenly Father who promises to not leave us or forsake us. And that is who I will trust for this season of my life. That is who, when the pain pierces my heart and the tears fall without end, I will run to.

During the best of times, I remember often crying myself to sleep. Weary and broken, I would curl up in bed and peace would cover me. I know it was the arms of my Daddy wrapping around me as He whispered, “I will take care of you.”

It was there I learned He means what He says.

This week is not the worst of times but it’s been a test. And when I was in school, before a test I would pray that God would help me to remember the things I needed to know. Well, during this life test, I am praying that God will help me to remember what I need to know… that His arms are around me, holding me close. And He’s not going anywhere. In that, I can trust and in trusting, I am able to rest.

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Parkinson’s Disease Is Discovered In The Bible!

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daffodils

I don’t know how many of you believe in God, but did you know that God talks about Parkinson’s in the Bible? Check it out!

David tells us in Psalm 21:7 that ‘through the unfailing love of the Lord, we will not be shaken. I am sure he meant to spell it ‘shakin’’!!!

Then, take a look at Psalm 16. In verse 11 it talks of the fact of the Lord always being at our right hand and because of that fact, we will not be shakin’! (Again, note the misspelling of the word.) I find this verse speaking to me so personally as my PD is on my right side! Isn’t it amazing how God is so personal?!

David brings up Parkinson’s again in chapter 62. In verse 6, he speaks of God being the only place he is able to find rest. Isn’t that so true? Don’t we try to find rest where often it can never be found? We take another pill only to realize it just didn’t do what we had hoped. We consult another doctor, another specialist, only to realize that they really don’t know anymore than the last guy we put our hope in.

David said in chapter 62 that God alone is our rock, our fortress and it is only in Him alone that we will not be shaken. Now, I know that David is really not speaking of PD, but he may as well be, for in our diseases, our afflictions, our distresses and despair, David reminds us that God alone is the rock that we can stand on and find strength. He alone is our fortress, the One and only One who will hold us up and while I know that David intends ‘shaken’ to refer to as fearful, stirred up, nervous, anxious, distressed – don’t we tend to shake more, increase in tremor activity when we are shaken? Therefore, it seems to make perfect sense that David is truly speaking of PD! For, when we allow ourselves to succumb to the stresses of life, such as PD, we are shaken! We do not stand firm and find our strength in the Lord and often are shakin’! I know that describes me!

You may think I’m crazy. But, God is speaking to the hurting, the wounded, those afflicted with a disease they never asked for. And he speaks to us clear to the end, where in Revelation He gives us great hope:

He will wipe every tear from our eyes. There will be no more death or mourning or crying or pain… (Revelation 21:4)

Don’t miss that!

Every tear.

Not just mine. Not just one. Not just those that are shed in silence. But every tear. Because, there will be no more death, no more mourning, no more crying, no more pain. Like the tears, the pain will be wiped away.

We will dance upon feet that are sure of each step and no longer fear a fall. We will rejoice and sing with voices loud, where once others strained to hear. And we will lift our hands in praise without pain. And we will no longer be shakin’. Or was that, shaken?

I don’t know how many of you believe in God, but did you know that God talks about Parkinson’s in the Bible? Check it out!

David tells us in Psalm 21:7 that ‘through the unfailing love of the Lord, we will not be shaken. I am sure he meant to spell it ‘shakin’’!!!

Then, take a look at Psalm 16. In verse 11 it talks of the fact of the Lord always being at our right hand and because of that fact, we will not be shakin’! (Again, note the misspelling of the word.) I find this verse speaking to me so personally as my PD is on my right side! Isn’t it amazing how God is so personal?!

David brings up Parkinson’s again in chapter 62. In verse 6, he speaks of God being the only place he is able to find rest. Isn’t that so true? Don’t we try to find rest where often it can never be found? We take another pill only to realize it just didn’t do what we had hoped. We consult another doctor, another specialist, only to realize that they really don’t know anymore than the last guy we put our hope in.

David said in chapter 62 that God alone is our rock, our fortress and it is only in Him alone that we will not be shaken. Now, I know that David is really not speaking of PD, but he may as well be, for in our diseases, our afflictions, our distresses and despair, David reminds us that God alone is the rock that we can stand on and find strength. He alone is our fortress, the One and only One who will hold us up and while I know that David intends ‘shaken’ to refer to as fearful, stirred up, nervous, anxious, distressed – don’t we tend to shake more, increase in tremor activity when we are shaken? Therefore, it seems to make perfect sense that David is truly speaking of PD! For, when we allow ourselves to succumb to the stresses of life, such as PD, we are shaken! We do not stand firm and find our strength in the Lord and often are shakin’! I know that describes me!

You may think I’m crazy. But, God is speaking to the hurting, the wounded, those afflicted with a disease they never asked for. And he speaks to us clear to the end, where in Revelation He gives us great hope:

He will wipe every tear from our eyes. There will be no more death or mourning or crying or pain… (Revelation 21:4)

Don’t miss that!

Every tear.

Not just mine. Not just one. Not just those that are shed in silence. But every tear. Because, there will be no more death, no more mourning, no more crying, no more pain. Like the tears, the pain will be wiped away.

We will dance upon feet that are sure of each step and no longer fear a fall. We will rejoice and sing with voices loud, where once others strained to hear. And we will lift our hands in praise without pain. And we will no longer be shakin’. Or was that, shaken?

Finding Hope

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dscn7258

I have been smiling all day today, thinking about yesterday.

I woke up at eight. I had been up late the night before, working on a novel I am writing and revising and revising and revising and… you get the picture. I got up, showered, got dressed and my daughter drove me to church. I had been there about ten minutes, and realized suddenly that my new medication didn’t like me. Or vice versa. After making a beeline to the restroom, I finally returned to my seat, next to my daughter and listened to the others in the building sing and it was heavenly.

The guest speaker got up and delivered his message – one of hope – and then we all went out to where the skeleton of the new worship center stood, surrounded by bulldozers and dirt and rocks. But, tucked inside the walls of that new structure, were two by four studs with names written all over them of loved ones who are lost. And on one of those studs there is written the name of my son.

The pastor spoke of a little girl in the Friday night service who found the names of her parents that she had written there two years ago, when those studs lay on the ground, waiting for the day they would be used in this building. She sobbed and he asked her grandmother why she was crying. The child, now nine, didn’t know her parents, as she had been abandoned by them when she was only three.

I stood there in awe. One of the characters in my book, that I had just inserted the night before, was nine, lived with her grandmother and had been abandoned by her parents at birth, never to see them again. I felt confirmed that I was on the right track. Or is that the ‘write’ track?
Anyhow, I went home and changed and then went to a church picnic with another church family, where five kids I knew were being baptized. One little girl I mentor, two others who are dear to me and another, the son of a dear friend. I watched each take a step of faith and in obedience, get dunked by the pastor. Total, nine were baptized yesterday on a beautiful Sunday afternoon in the lake. I am certain there were angels singing.
I then went home and had a nap and slept for over an hour, which is long for me, but still feeling woozy from my medication.

I fixed a quick dinner, as we were expected at my son and daughter in-law’s house for dinner. So at 7:30 we arrived, right on time and joined the rest of the family – my daughter in-law’s mother, who is a very dear friend of mine, and her father, her sister and brother in-law and my other two grown children were there, as well.

After finishing our ice cream, an announcement was made to all that I am going to be a grandma. Wait, no. That’s what I heard, but the announcement was actually that they are going to be parents. Yes, that’s how it went. But all I heard was that I am going to be a grandma and I grinned from ear to ear – at least.

After visiting a while longer, I went home with my other son and took a blanket from off of the chest against the wall and my daughter and I went out to the back yard, crawled up on the trampoline and watched the meteor shower. It was awesome.

There are not that many days anymore that are that full. There are not many days when I don’t hurt or feel ‘great’, but there are not many days that I find out that I’m going to be a grandma, either. It was wonderful.

The Blessing

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fall1

As my husband backed out of the driveway, en route to the airport, the guy on the radio made a comment that fall was here. Did he have that wrong. Fall is gone where I live and winter has arrived. No more shorts and tank tops, flip flops or capri pants. It’s sweatshirts, long johns, cuddleduds and wool socks from here on out.

I’ve already determined to stay by the gas fire this winter. Helps the aches and pains not ache so much.

So, my flight…

I realized again today that I have Parkinson’s Disease. Some days you get by with feeling like you’re sort of ‘normal’. Of course we all know that with PD comes a new normal.
Realizing again that I have PD means having to confront the monster – this intruder – face to face, whether you want to or not. Every once in a while you have to be reminded that you are different than other people your age. You look younger than you feel and you feel older than you are. Today was my reality check with the monster.

I boarded the plane. So far so good. Got everything checked in. Got on the wrong plane. Got buckled. Found out. Got off. Got back on. Took an empty seat next to my flight mate who happened to have done the same thing. Embarrassment is always better with two.

We arrived in Seattle a little earlier than my original flight, which I would come to recognize as a blessing.

I didn’t realize how much I have slowed down. After exiting the plane, by the time I got to ground level, I had a following. It was much like when you’re driving up a hill in an old clunker. You’re going as fast as it will take you but not fast enough for the umpteen cars lined up behind you, their drivers politely keeping their hands off their horns all the while hoping for a turn out so you’ll over and let them zoom by in their faster cars.

Well, today I was an old clunker. At least I felt like it. The line in front of me got further and further away as the line behind me got closer and closer behind until finally, I found a turn out and let them all go by.

There is a verse that says God works all things together for good. I got on the wrong plane by accident but it was one of those ‘things’ that God was working for my good. I needed that extra half hour after landing to get to the next gate, because while my spirit said I had just as much energy as those who had backed up behind me and were ready to race by, my monster mocked me and reminded me that sometimes – I’m an old clunker.

I boarded the next flight. This time the correct one. And we arrived on time. I got off the plane and went through the same thing. Backed up line – pulled over at the nearest turn out. I wanted to cry. I wanted to get a ride. I wanted someone to carry me. I wanted to be well.

But I’m not ‘well’ and though the monster threatened to laugh in my face and remind me that I can’t do what I used to, I didn’t cry. I didn’t get a ride or have anyone offer to carry me. Instead, I kept walking, realizing I’ve arrived at a ‘new’ normal, yet again.

I am slower and my steps are shorter. Some call it the PD shuffle. But, this new dance—this shuffle—it’s part of life—my life. My new normal. I can view it as a monster or, I can see it as a blessing in disguise. After all, the slower you go, the more you see. And there’s so much to see when you’re not in a hurry to zoom by the old clunkers that seem to hold you up from going through life at a faster pace.

Next time this old clunker is running slow, I’ll pull over again and be thankful for smaller steps and the opportunity to see what others may miss. Especially if I’m on the wrong flight.

Asking Why

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dscn0211

Some are raised not to question authority. That is not a bad thing, in my opinion, when put in the right context. We don’t question our parent’s leadership. At least not noticeably! And then we are taken to church, where some of us are taught not to question God’s authority.

That is me. And as for me, that looked like never asking ‘why’. As a younger person, I took it at face value. I didn’t question my parents, I didn’t question God. Growing up, I conceded that I would not question God because He was sovereign and had a reason for everything that He did. I didn’t question it. Even if I may not have understood it, I didn’t question it.

The other day I finally got angry. I hadn’t gotten angry yet. But it was time. I had gone through the first stages of dealing with my Parkinson’s – sadness, grief. But never anger. It had been two years and it hit me. I am only 47, my doctor confident that I’ve been struggling with it since 32, when quite possibly it had been misdiagnosed as systemic lupus. But for me, it’s been two definite years of knowing that I’ve been labeled with Parkinson’s disease.

And that day I was angry.

Because I’m only 47.

Because my right arm and my right hand shake.

Because my right leg shakes and my right foot as well.

Because my jaw and face shake.

Because I can’t smell roses anymore.

Because sometimes it’s hard to swallow and do other things that I used to not think about like button my pants or put on my watch.

Because I get tired more easily and it’s hard to make it through the day without a nap.

Because I am not as strong as I used to be.

Because my foot drags and I often trip.

Because I have fallen down the stairs twice.

Because my mind always seems scattered. (Hey, it’s my disease – I can blame anything on it!)

Because I don’t sleep well.

Because I get sick from the medicine.

Because I have Parkinson’s.

Because I’m only 47.

Those are all pretty good reasons to be angry, right? And, I wasn’t necessarily angry at God, but perhaps with Him. He allowed this to be, but didn’t cause it. So, we got angry together. And in my anger, I wanted to ask, “Why?”

But I didn’t.

Instead, I sat there as He dried my tears and He whispered, “Jesus wept and He also asked why.” I stopped crying and thought about what He had just said to me.

“My God, my God,” Christ cried out on the cross, “why have you forsaken me?”

He was not condemned for asking His heavenly father “Why?” There also seemed to be no answer there that we are aware of – at least not an obvious one. But I am quite confident the answer was there and I am quite confident that Jesus already knew what it was. Just as I usually know the answer to the why, making it useless to even ask why.

Why do I have Parkinson’s? Why not? Why not me instead of someone else?

Why does my friend have kidney disease?

Why is my son an alcoholic?

Why did my aunt have to die from medical neglect?

Why does a friend of mine have to care for children whose biological parents don’t care enough to want to get off of drugs?

Why?

Why?

We can ask why until our list is exhausted and the answer can be as simple or as complicated as we wish it to be.

The answer to the question of why for me is that God is in control, sovereign, and while He never gives us more than we can handle, He will allow what we can handle. Why? To make us stronger and to come along side and help to make others stronger.

So, ultimately, I have Parkinson’s. And if just one life is encouraged, if just one life is strengthened, then that is why I have Parkinson’s. And that brings me joy.

Life Lessons Using A Rubber Duck

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Well, it’s time for an update of some sort, don’tcha think? Time goes by sooooooooo fast and other days, seems so slow. Sounds like a song.

I met a new PD’er online. Now there’s three of us who are addicted to online PD conference chats at 3 in the morning because the RLS is keeping us up (and alert) or the meds to stop the RLS is keeping us up (and alert). Which do you prefer? Survey says…

Well, we are trying to sell our home. Not easy these days, you know. I was struggling with all of the issues surrounding this big thing in my life and for this entry, I wanted to share what I learned. This comes from another blog I do called Planting Gardens – www.plantinggardens.blogspot.com. Here it is:

LIFE LESSONS WITH A DUCK
by Sherri Woodbridge

I have come to my mom and dad’s, to spend some time with them. I think I am also trying to spend some time getting my emotions, feelings, thoughts and feelings under control. I cannot stop crying when I think of my kids and having to leave them, not knowing the next time when I will see them again.

Is that what is known as the empty nest syndrome? Is there some way to get those feathery fellows to fly home? Is this part of ‘letting go’? I suppose it is, but surely I do not have to like it. I am most certain Paul did not like going to jail and yet, he praised God while he was there.

There is a song that goes something like this:

Blessed be the name of the Lord

Blessed be His name

He gives and takes away

My heart will truly say…

Lord, blessed be your name.

Every blessing you pour out,

I’ll turn back to praise

And when the darkness closes in,

Still I will say,

Blessed be your name.

He gave me my family and in a sense has chosen to take most of them away by moving them to other parts of the country. In this darkness that seems to be enveloping me, I can choose to cower to it or I can choose to praise Him in spite of it. Will my heart truly say, Lord, blessed be your name?

I am awake and the rest of those in the house are sleeping. I have opened the shades to watch the water rush by in the river before me. It is running fast and the river is full.

A duck is floating down the river. He floats alone, seeming quite content and to be enjoying his trip. As the river carries him downstream, he does not fight it. Then he appears to slow down and drift to the side, sitting for about ten minutes as he preens himself.

For some odd reason, I feel anxious for him as he wades to the side – alone. Where is his family? Where are his friends? Why is no one else coming? Doesn’t he know that if he keeps going and doesn’t go back he’ll most likely drown at the falls?

A thousand thoughts crowd my mind, as I panic for this duck. Then I notice – he doesn’t appear worried at all. He is still quite content, over there on the side by himself.

I can be like that duck, if I choose. I can allow God to take me downstream, through rushing waters, knowing not where the river will take me and enjoy the ride – alone. I would prefer to be traveling down that river with all of my family around me, knowing they are there if I need them – being there if they need me. But ultimately? All I really need is to trust God and lean on Him alone. All I really need is… Him. He will take me safely and securely, allowing me to drift off to the side every now and then to find renewed strength and rest.

I continue to watch that duck and as he starts back out for another jaunt, he only goes about ten feet on his next venture before trying to go back upstream – back to where he came from. As I watch him, he struggles in his fight, going in the opposite direction from where the river is trying to take him.

It is then that I realize – that is what I am doing. I am fighting God. I want to go back upstream to where I came from, to how it used to be – Sunday dinners with everyone there, game nights, making homemade ice cream, watching Boo – seeing her smile, hearing her laugh. Yet, for some reason, God has taken me down this river of life. It
is a river that twists and turns and even so, while not having the slightest idea of where it is running to, unaware of what is around the bend, oblivious of where I am going to end up, I hear Him whisper, Will you trust Me?

Will I? Will I drift to the side and rest a while, allowing God to be the one to fill the hole in my heart? Will I sit there with Him, letting Him be the one who dries my tears as He pushes away the darkness that surrounds me? Will I realize that He is the river that takes me to unknown places? Will I quit fighting Him by trying to swim back upstream to what used to be?
Will I turn to Him, with an aching heart and still say, Blessed be Your name?

In surrender, I pull up my webbed feet that have become strong from fighting and trying to go my way, and I allow Him to bring me to His side and rest.

Yes. I will trust Him. After all, He is all I need.

Oh Lord, forgive me. This morning I prayed for new eyes to see you in my life and you gave me a new picture by using, of all things, a duck. Help me to be like that duck – content with just You – needing only You. Help me to float down this river of life with You, knowing You will take care of me, pushing away the darkness that closes in. When I am tired and my heart aches, pull me to the side and hide me under Your wings, just as a mother bird protects her young. Then, when it is time to float again, let me not look back and want to go back upstream, fighting You in the process but to look ahead, even if I don’t know where You are taking me. I want to trust You. No matter where You take me or how I may get there, at each turn, I want to look to You and say, blessed be Your name.

I would encourage you that if you’re struggling with anything today, there is a God who cares and is waiting to take you under His wings and hold you close. All you have to do is… let Him.

Life’s Disappointments

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I am writing this for Saturday morning, for the iTeam.

The iTeam is a group of four women, of which I am one. We all met on the internet, via support groups for PD. We were all meeting today in Georgia for the Young Onset Parkinson’s Disease Conference slated for this weekend. I say ‘were meeting’ for now, I am not. I missed my flight.

Sure, I shed a few tears. Well, maybe several. However, I didn’t sob. I didn’t swear. I didn’t give the employee who sent six people with tickets in their hands, ready to check in – all be it with 45 minutes until take off – I didn’t give him an icy stare or think bad thoughts in my head. (Those emotions will come later -ha). Yet, I was surprised at my immediate reaction.

Getting mad, passing blame will not make this better, and God works all things together for good to those that love Him and are called according to His purpose.

Wow. Where did that come from? I guess I’m growing up – a little bit – again. Nevertheless, I am disappointed. Disappointed that I will not get to meet these three women who have become very dear to me. Disappointed that I will not hear the talk about DBS (Deep Brain Stimulation) that my doctor is recommending that I have done within the next year. Disappointed. Just plain disappointed. And yet… I am joyful.

I went to see my neurologist last week and he asked his normal questions. Someone usually goes with me to these appointments to be my personal memory assistant. That day, my husband went. At one point, he had to leave the room and as he closed the door behind him, my doctor turned to me and said, “Good. I feel like you can never say what you want when someone is here. So tell me, how are you doing? How are your moods?”

For those of you that are not very familiar with PD, depression is one of the main symptoms we get to deal with on a day-to-day basis.

“You have a lot of reasons to be down right now.” Then, he actually listed all the reasons I had to be down as he counted them on his fingers. (He’s got a great memory!)

“Your husband’s out of work. Your daughter just graduated and is trying to find a job to pay her loans. Your son and his wife just moved away with your new granddaughter. Your other son is trying to find his way through life. You have PD.”

That’s just what he knew! As he listed them, I thought, ‘Yeah! I do have every right to be down!“

I looked at him and then answered. “I do have a lot of reasons to be down right now, but I still feel joyful.”

I still feel joyful. In spite of my disappointment today, there is joy. There is joy because I have hope. I have hope because I believe God works all things together for good. I believe that He works all things together for good because I know that He loves me and knows what is best for me.

For some reason, I didn’t make my flight. For some reason God had other plans. I may find out what they are or I may not. Regardless, I believe that whatever the reason, it is the best.

Excuse me while I answer my phone…

Well, I have to go – my son was just in an accident.

I’m back…

He’s okay. An older woman hit his car. Hmmm… I wonder if that’s one of God’s reasons.

Nehemiah 8:10 says, “Do not grieve, for the joy of the Lord is your strength.“

It’s true. I choose not to grieve over my disappointment because He is my joy and my strength and I hope that this day you find joy and strength in Him, as well.