Not Again!

 No! No! Not again! Breathing is shallow, fighting  panic, in-out-talk to yourself-close your eyes and attempt to relax— battling with  Respiratory Dyskinesia, for me, a daily unwanted companion.

Respiratory dyskinesia : is a rare condition causing muscle spasms or abnormal movements in the diaphragm and chest wall.

You feel as though you can’t breathe-as though someone is gently holding a pillow over your face, can’t get your full load of oxygen- chest discomfort is painful breathing. This generally occurs when you’ve taken too much levodopa/carbidopa. Unfortunately you seldom can predict when it will arrive. Needed is a gauge and a little red  flashing light implanted on the chest warning that your numbers are getting too high. Unfortunately no such device exists or will ever exist!

I thought it would be helpful for those who are interested to define a few PD terms. I forget that everyone is not fluent in PD “language”. I am choosing a few terms that will pertain to me now and in the future in case you want to follow my bumpy road..

Dyskinesia, as listed in the previous paragraph is a life alternating side effect of PD medication that causes erratic, involuntary movements. For the “average” PD person (not me, of course, I get to “enjoy” the rare one!) It is generally seen in the legs and arms. If you have recently watched  Michael J. Fox  in any TV or movie performance you  better understand this enemy!

“On” and “Off” periods-fluctuations in how well medication controls symptoms throughout the day.  

        “On" periods occur when Parkinson's medications are working effectively, allowing for easier movement, reduced tremors, stiffness, and better overall function. On lookers might not even recognize you as a Parkinson “person”!

    "Off" periods occur when medication looses its effectiveness between doses, causing motor and non-motor symptoms to return or worsen. In my experience as the disease progresses you experience more of the “off, than the on.” And believe me everyone who sees you knows you have the shaking disease!

Bradykinesia - is an abnormal slowness of movement and a progressive reduction in speed during your everyday activities.

It becomes more difficult to button a shirt, brush your teeth, or go up and down the stairs. Although it appears to be a muscle weakness it is not. Rather it is caused by a reduction in dopamine that affects how the nerve cells “talk” to the muscles.

Freezing- (or better known as “freezing of gait”)is a brief motor block-a temporary inability to move. It often occurs when walking through a doorway. Episodes are brief but greatly increase the chance of a fall. I’m experiencing them more and more as I get up to go to the bathroom in the middle of the night. It sometimes fascinates me as I stand on one side of the doorway gazing down at the threshold talking to my feet. 

“Move it guys!”

 Like a company of little soldiers they eventually will march to the commode but not always on time to avoid the “rain”.

 “Sweetheart,  I need you!”

DBS stands for Deep Brain Stimulation. This is a surgical treatment that uses an implanted medical device to send electrical signals to specific areas of the brain. Two holes are drilled in the skull, followed by the insertion of wire maneuvered down through the brain matter to the “center” of the brain. They are attached to a “box” you wear under the skin near your collarbone, similar to a pacemaker. The device is then “controlled” by doctors and your iPhone. A very simplistic explanation and if interested AI has a much improved definition. That is about the extent of my knowledge at this point. If this seems “Greek” to you, imagine how it appears to Me!

 I am daily quoting 1 Peter 5:7 in my head: “Give all your worries and cares to God, for he cares about you.” And Joshua 1:9 : “Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.” 

He will provide what I need, when I need it. For example, I have a new friend who has already walked this path. She doesn’t live here but is just a phone call away. I am thankful I can call her and shed my concerns on her listening ear. 

A couple more verses to take to heart: “Trust in the Lord with ALL your heart,(even when there seems no answer), and lean not on your own understanding (even that of your doctor), in ALL your ways acknowledge Him (to whomever asks how you can tolerate this dragon) and He shall direct your paths (every single one of them). Proverbs 3:5-6

"She"

Her fingers lightly touch the edges of the calendar on the kitchen island. In former days the empty squares boasted dentist and doctor appointments, dinner invitations, even theater performance dates with an asterisk to show where the tickets were located. Valuable “stuff”. Now they were either empty or they displayed an angry red X, canceled events, more heartache, sadness dripping off the pages. As she makes her way to the padded kitchen stool, preparing for the unwanted guest her hopes are again dashed as a flyer advertising the Mother/Daughter spring banquet falls out of her Bible. Why bother to write it on the calendar and be disappointed once again. Just scribble a red X over the box and leave it at that! So many scars. So many “I don’t feel good. Have to cancel” responses from concerned friends and acquaintances, she’s lost count of the exact number. Focus. Prepare. This is your life. The pinky begins to wiggle involuntarily. He’s coming, quietly sneaking into the kitchen. She glances to the kitchen clock. He’s right on time, laughing, mocking, whispering:

 “You didn’t think I’d forget, did you? Did you miss me?”

The tremors begin and intensify as she opens the cabinet containing vials of meds. She knows she should have taken the pills earlier but she just forgot-big mistake. The ugly guest is never late, never easy on her, never kind or gentle. Her hand today is even more wild than normal-resembles a frantic robin stuck in a layer of sticky mud. 

So what does she do with this messy reality? She makes her way to the bedroom where there is a tattered lazy boy, her place of respite. Here lowering her tired body into a butter yellow afghan and looking up to the wall, above her black pole lamp to a framed picture given as a gift several years ago. It lists only two words but they foam over with warm comfort: CHOOSE JOY

JOY? Where is the joy in this “picture”?As I ponder that question I’m reminded of Jesus and his view of joy.

Hebrews 12:2.

 “…fixing our eyes on Jesus, the pioneer and perfecter of faith. For the joy set before him he endured the cross, scorning its shame, and sat down on the right hand of the throne of God.” Where is the joy for Jesus as he 

faces the cross? I don’t have the theological answer to this question except to say, in my heart I know Jesus sees me as his. He is looking through the cross at someone who needs Him and the salvation only he could offer because of what he did at the cross!!

Now he offers me a choice. 

Oh the joy of being saved, forgiven and filled with the Spirit! Sometimes we forget the benefits of being saved and lose our joy. Then we must cry out Psalm 51:1 “Restore to me the joy of your salvation.”

As I struggle with Parkinson Disease I reflect on a verse in Nehemiah 8:10 “the joy of the Lord is my strength”. I’m learning that when I am weak He is strong! He looks right into my soul and says,”My grace is sufficient for you, for my power is made perfect in (your) weakness. Therefore I will boast (as Paul did) all the more gladly about my weakness (my disease) so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses (PD), in hardships (tremors), in persecutions (canceled events), in difficulties (medication side effects). For when I am weak, then I am strong!” 2 Corinthians 12:9-10.

I choose joy! 

                                                                    Therein is my strength! 

Is God REALLY speaking to ME?

 After hours and hours of no sleep I was on the floor crying. My heart was broken. Detox? How is it possible to get this poison out of my body? What had I done? My body was hooked to a drug called mirtazapine, prescribed by a gastroenterologist as a stomach relaxant in low doses. He never informed me that in high doses it is used to treat depressive disorders, a dangerous “mind”drug. We were not in the era yet of the constant use of search engines checking and rechecking possible side effects, or whatever else we wanted to learn about medications. At that time you relied totally on the knowledge of the doctor. Sometimes we forgot and today still forget that doctors are only “practicing” medicine and make mistakes.

As I lay there sobbing fighting what I knew I had to do to get off the drug I heard someone call my name:

“Nancy, Nancy”.

 Now understand the jury is still out on whether I actually believe in visions or not, especially in today’s culture, During the time Jesus walked the earth, YES, I know God spoke to others for various reasons but now? I can’t totally explain it but I do know what was happening to me was real. 

I turned my head to capture what was being said to me and I saw a curtain of tears and a heard a voice:”

“Nancy, pull back the curtain.”

 

Still lying on the floor I swiped my hand and the curtain of tears moved revealing Jesus sitting Indian style behind the wet wall. He gazed at me and whispered:

“Nancy, I won’t take your suffering away but I promise you that I will hold your hand and walk with you through the suffering.”

 Silence permeated the room. I stood up, filled with a strange peace ,walked to my bedroom and lay beside Hunter falling into a comforting, warm sleep. This was three years ago, before I knew the extent of real suffering. Jesus has never left me! So many nights since I have felt his presence, holding my hand, reassuring me I’m not alone and that there is purpose in it all. Jesus never waists our suffering. 

There is a Bible verse in Isaiah 43:2 which has become so precious to me:

“When you pass through the waters, I will be with you and through the river that will not overwhelm you, then through fire, and the flame shall not consume you.”

I am living proof of this truth.

Eventually I was able, with God’s help, to free myself of that drug dependance but now I am in a new place with the Parkinson’s Disease.

Suffering is knocking once more on the cracked, rusty door of my life. It has been over two years since I last heard and saw Jesus. I heard him again in the hush of the new storm. The disease, fast tracking more violent tremors, respiratory dyskinesia, sleepless nights, needing higher and higher doses of dopamine, possibly even facing brain surgery? 

”Why? Why God? What is happening to me?”

A still, quiet voice breathed in my ear, “You can not write about something you have not experienced.” I sat in my chair stunned;

a truth I understood, not one I wanted to embrace! 

So I find myself in an awkward position-craving to blog yet reluctant to pick up the pen as it might mean experiencing the pain!

The question remains: Do I trust God?

Will I take to heart Deuteronomy 31:6?

“Be strong and courageous. Do not be afraid or panic for the Lord your God goes with you, (even ahead of you), he will never leave you nor forsake you!”

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"The Caregiver"

 II see his shadow at the foot of my bed, tears cascade over the wrinkles and his lips are moving with no sound in the night quiet. He’s  praying for me. 

He rises` at 2:15 A.M. as I cry out,”I need meds!” He hustles to the bedroom returning with water and necessary pills to allow me a few more hours of rest before the violent tremors return. As I drift off to sleep he’s under his nightlight recording the amount and time of administering medication.

7:00 a.m. finds my caregiver stirring homemade oatmeal and delivering me a steaming cup of green tea laced with local honey.

Laundry is tumbling in the dryer and fresh sour dough bread rises on the counter. I drag myself out of bed and shuffle into the living room met with a kiss and sweet smile totally undeserved as my sweaty body plops onto the couch, complaining of more tremors and reach once again for meds-like a heroine addict whose focus is on the next fix! He deserves more but that’s all I can give at the moment!

Morning sunshine finds him washing windows, vacuuming the floor, while cutting up stew meat for tonight’s dinner of beef and gravy. Never a complaint. Never a  sigh of “wish I could play pckleball”Instead he tenderly cups my face landing a kiss on my nose while smiling to ask, “what delicacy can I fix my sweet wife?” I marvel at those sparkling eyes. He looks at me like Christ looks at the church-full of compassion and selfless love. 

As the day progresses he never seems to tire of serving me. In fact he  has said that he feels guilty knowing God has allowed me to be ill so he can learn to serve as Christ served!!

A long day of changing wet sheets, washing windows, preparing a three course meal, washing dishes by himself, filling tomorrow’s medicine bottles, grinding wheat for tomorrow’s batch of sour dough bread. The day draws to a close he reminds me of our nightly Bible reading and Cribbage game followed by who can come up with the word for “Wordle first” activities.

As he snores I marvel at God’s blessings! I have my own….

chemist! 

chef! 

game partner!

advocate! 

cheerleader! 

record keeper! 

sage! (one who is wise)

Teacher

and on and on the list goes!!!

Now lest you think he’s one of a kind, isn’t he?

It’s your perspective that determines the qualities in your caregiver. 

If you are the caregiver recipient it’s whose eyes you are looking through. Are you looking at your caregiver through the eyes of Jesus??

Jesus is the one and only true caregiver. He cared so much that He was willing to die for his caregiver recipients, which was and is the world-past, present, and future! I’m so glad He sacrificed the ultimate so I can always be cared for by Him! 

John 3:16

“God so loved the world that He gave His one and only son, that whosoever believes in Him shall not perish but have eternal life.”

"Cancel...cancel...cancel

Cancel the upscale restaurant reservation…

Cancel the camping trip…

Cancel the wedding reception reservations …

Cancel playing with two great-grandchildren you haven’t yet met…

Cancel order for an emerald necklace…

Cancel hair cut appoint…

Cancel, cancel, cancel and on it goes.

Disappointment drips from my heart as I once again face dreams shattered, appointments gone, sitting at home nursing a stomach ache, crazy wild tremors, or other such disturbing health issues related to my “dragon friend”-Parkinson’s Disease! 

You want to guess how many times I have anticipated the aroma and taste of a delicious  menu at an upscale restaurant only to try and explain to the head waitress why I have to cancel the day of the event- ? at least 10 times in the last three years! 

Is it the devil laughing as he adds another check mark to his chalkboard of victories over the believer?

Is it a mini-course in God’s school of sanctification-“Growing the Believer 101”?

Or is it simply part of being human-something to accept and move on?

I don’t have the answer, obviously, since I’ve been down this road once or twice.

One thing I do rest on is the knowledge that it is God’s battle and He is fighting for and with me. 

There is a story in the book of 2 Chronicles 20 that is a beautiful example of God fighting battles for “His Own”.

Jehoshaphat was the fourth king of the southern Kingdom of Judah, ruling for 25 years around the 9th century BC. He is remembered as a good and godly king who strengthened his nation and sought God.

At that time in the history of the Jewish people there were a number of nations who were out to fight and destroy Israel, actually no different than today! At this point in their history it was the Moabites and the Ammonites. Immediately when Jehoshaphat learned of this approaching enemy he proclaimed a fast for all the people, then stood up in the assembly to seek the Lord. Jehoshaphat reminded God that Israel had been good to these people in times past “Our God, will you not judge them? For we have no power to face this vast army that is attaching us. We do not know what to do, but our eyes are on you.” (I’ve often cried out with a similar voice: “I don’t know what to do, but my eyes are on you.”)

This is what the Lord said: “Do not be afraid or discouraged. ..For the battle is not yours, but God’s. Take up your positions and stand strong and see the deliverance the Lord will give you. Go out to face them tomorrow and the Lord will be with you.”

I think the ending of this story is simply fantastic! In the early morning the people as a group go out to do battle singing: “Give thanks to the Lord, for his love endures forever..! When they approach the battle field they discover the vast armies are all dead, having  fought against each other!! The men of Israel not only do not have to do battle but discover a huge array of plunder all for them!!!

Our God does for us far more than we could ever ask!! His generosity is beyond our imagination. We just need to open our eyes to recognize it! To truly end this story are verses 29-30. “The fear of God came on all the surrounding kingdoms when they heard how the Lord had fought against the enemies of Israel. And the kingdom of Jehoshaphat was at peace, for his God had given him rest on every side.”  Wow-powerful!! 

When I read my own words here I am awed that God puts up with my complaining, whining, feeling sorry for myself! Even today He is showing me that He cares and is in the process of fighting for me-trying a new Parkinson medication that offers hope for longer rest at night and less distress during the daytime hours. 

Isaiah 43:19

“Do not lose hope in times of trouble, for God is working in the unseen! His hand is steady and His timing is perfect in bringing good out of the difficult.” 

He certainly did that for Jehoshaphat and He will do it for me and for you!