Do I really trust You?

 Do I really Trust You?

“Trust in the Lord with all your heart,

Lean not on your own understanding;

In all your ways acknowledge him, and He 

Will surely direct your paths.”

(Proverbs 3:5-6)

Will He really direct my paths? Is He really that dependable? Can I swing on the trapeze of life without a net?I thought I could say yes to this question until I  recently stepped on the tightrope and discovered my balance pole was missing. I must have a pole! OK-no pole I then need a backup plan! Where’s the net? I have to have a net!

I discovered I don’t really trust Him with my Parkinson Disease. At my recent neurology appointment I had a page of recent developments all related to my disease. One of these will work for me, if not now later, when I need it!

There was :

DBS (deep brain stimulator). Electrodes are implanted in the brain that control tremors and other Parkinson Disease problems.

FU (Focused Ultrasound) a noninvasive, incisionless therapeutic technology that uses high-frequency sound waves to target tissue deep in the body.

Wearable pump (like diabetes use) to determine amount of meds necessary and it avoids the stomach, which is often the cause of long term problems.

Crexont-new pharmaceutical to extend time between does, giving one more sleep and less “watching the clock”during the day.

OK, so none of them work for me-meds make me sick, surgical interventions too risky at my age, and with extremely sensitive skin I’d be allergic to wearable pump. 

Back to trusting God TOTALLY! 

Just two nights ago He showed me I can indeed trust Him to meet alll my needs.

The following little story is true! A few days ago Terri, our daughter,  suggested a movie to watch called Nefarious. She is concerned that we are aware of Satan’s power and His plans. Although it was fictional it made one aware of what is truly happening all around us in the “unseen world.” As I watched it I became more and more upset. Half way through the movie I quit it and decided I could not stomach the evil portrayed by this actor. I was even angry at my daughter, yet it was the best thing she could have done. I maintained a heavy persona the remainder of the evening. 

Before Hunter and I retire each night we have established a comfortable routine: read the daily assigned Bible passage (we are reading it together in one year), pray, play a game of Cribbage, do Wordle (the New York word game that stretches your mind to figure out the hidden 5 letter different word every night.) Then off to bed.  Our Bible passage was Psalm 6, which incidentally applied directly to me as I’ve struggled with a strong desire for healing from Parkinson Disease and the anguish that accompanies that desire. I’ve spent a number of nights “flooding my bed with weeping”, shedding many tears only to realize once again that God hears my weeping and accepts my prayer! Often the heaviness lifts and I go to bed refreshed but not tonight. I pull out the iPhone and remind Hunter it’s time for Wordle. We take turns guessing the word when suddenly we both get it at the same moment and in shock look at each other in disbelief! The word is demon! Really? Is God saying something to me? Although restless I make my way to bed and drift off. In the middle of the night I suddenly wake up with a feeling of foreboding so I start to pray. As I pray God gives me a vision of Christian’s bed and room of classmates at the National Guard training center, where Christian is spending several weeks preparing for his duties in the Guard. I see beds with eyes glowing under them, all except Christian’s which is “vacant”. I immediately know what to do -pray, ask God for protection for Christian. As I pray suddenly Michael, the angel who battles evil in the Bible is standing at the head of Christian’s bed with sword drawn. Meanwhile the remainder of the demons retreat to the corners of their beds and shiver. I continue to pray for Christian’s protection and the protection of all his cousins. Finally I fall into bed engulfed in God’s peace and comfort knowing full well I can indeed trust Him for the future!

Dystonia-Dys what?

After a great deal of reading I believe, although not discussed with my neurologist as of yet, that I have dystonia of the stomach, referred to as "abdominal wall dystonia" or "truncal dystonia".

Dystonia is a neurological movement disorder that causes involuntary muscle contractions, resulting in twisting, repetitive movements. It can affect one specific muscle, a group of muscles, or the entire body, and the involuntary spasms are often painful.

It feels like it is coming from "inside" the stomach or GI tract, but it is actually a neurological issue causing involuntary, sustained contractions and cramping of the outer skeletal muscles of your torso. 

The Lord seems to think I am “special" and can  juggle a NUMBER of medical issues at the same time: Parkinson Disease, dystonia, urinary incontinence, micrographia, arthritic knees, hallux rigid (removal of knuckle of big toe resulting in, for me, three surgeries and a MRSA infection), and scoliosis. 

Now this is not a brag list, as though one would brag about having Parkinson Disease, nor a list of accompaniments, but rather a list you might use as a comparison to your “specials” and say,”Thank you Lord! I’m glad I don’t have _____ to deal with daily.” Remember there is always a blessing waiting around the corner no matter what you are wading through! Today my blessing is a new grandson. Thank you, JESUS for Roy Andrew Boughman!

                                                                        Psalm 42:5-6

“Why are you cast down, Oh my soul?

And why are you in turmoil within me?

Hope in God; for I shall again praise him,

my salvation and my God.”

"Hold on to hope. 

It's a good thing,

maybe the best of things."

(from The Shawshank Redemption)

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My plans, your plans, His plans? My purpose?

“For I know the plans I have for you, declares the Lord. Plans to prosper you and not to harm you, plans to give you hope and a future.Then you will call to me and come and pray to me and I will listen to you. You will seek me and find me when you seek me with all your heart. “

Jeremiah 29: 11-13

Have you ever felt you have little or no purpose except medicine bottles, walkers, and sleepless nights? Even though we are “taught” that we (husband and wife) battle this Parkinson dragon together. It can be a lonely road, for the caregiver and the patient, especially if the caregiver had some bucket list items that were never “checked off” and the partner is not able to share in those retirement experiences. I’ve often heard it said “This is NOT how I pictured our retirement!”  Wait a minute! This is not what I envisioned as the last big roundup either! Sound familiar? ?  Where are the bucking broncos, the plane rides to distant countries, the color, the fun and mystery of new and different? What purpose is there in mucking the identical stalls day after boring day, riding the same flat range, losing all hope of independent fun?? The kids are grown with families of their own-now it’s our time-right?

 Then in strolls PD and everything changes! The dresser, where once pamphlets of world wonderful sites awaited nightly reading now is littered with doctor’s medication scripts and vials of various colored pills. Instead of an open suitcase being piled with folded shirts there rests a walker and a commode for night time trips. Visas hold expired dates and calendars are covered with giant red exes! The final straw is sitting beside your best friends and watching their home movies of Egypt, their recent get away! Oh, it may not be travel that was your dream-volunteer work with needy kids or weekly bridge with the neighbors, shopping sprees with your best friends, or golf every day.

God has plans. They may be crafted different than we imagined but God is always good, as are His plans for you. In Jeremiah we are told God knows the plans He has for us and if we seek Him with our whole heart we will find Him and then we will know and understand those perfect plans. Our life does have purpose, no matter the condition of it, as He so beautifully showed me a few days ago.

Allow me a few moments to share.

It was one of those tougher than usual mornings where emotions ran wild and erratic as the tremors took over the fingers and pain radiated down my scoliosis back. Why, Lord, am I here. What good is this ???Upon returning from a brief walk I pulled out my Bible and read the Daily Bread devotional, which in essence challenged me to praise God for His gift of music. As I began to seek Him with my whole heart He reminded me that one of our grandchildren is gifted in playing the violin so I texted him with the devotional and His reply revealed my purpose: “Thanks Nani. I love playing for God, myself and you.” Hey all you grandparents out there. Your purpose above all others is to reflect Jesus to your grandchildren. Could there be any task more noble, more fulfilling, more satisfying?

I have a couple examples given to me through a friend via the Holy Spirit, ideas some of you might latch onto and run with, as I have done.

1. We want our children to read and know God’s Word but sometimes it is difficult for them to understand so why doesn’t grandma Bible journal?  That translates into a year drawing little cartoons or translating a special Bible verse in the side margin, complete with bright colors. Pray each day as you read the scripture and draw/write in their individual Bible.  Be sure you let them know you prayed for them each day you opened their Bible. Give them this Bible when they turn 16. (One of my grandsons told me that he won’t take the Bible out of his room for fear of damaging it or losing it so it resides on a special shelf when he isn’t reading it.)
2. Write a letter to each grandchildren when they graduate high school  congratulating them, adding  a little $ and explaining the importance of not being “unequally yoked” Give them the book, “Boy meets Girl”’ a book to encourage a godly romantic relationship., or something comparable. (They may not listen to mom and dad in this area but they will often listen to grandparents.)

      I pray these suggestions will start your creative juices flowing and your eyes will be opened to your purpose: speaking to the next generation.

“A grandmother may not always fix everything, but she can place her family in God’s loving hands.”

 

Struggling-Devoping Strength through Weakness?

We all have struggles in various seasons of life; some physical, some financial, some relational, even spiritual. It’s a human condition all of us face but I must admit I think PwP face more than their share! 

One of the most difficult struggles for a PwP (person with Parkinson Disease) is with medication, especially in the later stages of the disease.

There are a plethora of different meds “out there”, as varied as the human fingerprint. The gold standard is Sinemet and daily I thank the individual or company who discovered that “miracle” for Parkinson Disease. But it’s not necessarily always the answer; too much and you develop dyskinesia, which results in violent, wild movements, as well as possible hallucinations.(Never forget the night I kept company with a lion!)Too little and the tremors ramp up and become very debilitating. There are many other side effects but I’m most familiar with these because of my own experiences.

 In some ways it parallels the bodies need for sugar, which is the diabetic struggle, except in Parkinson there is no way to determine that you are half full or approaching empty of your necessary level ,of dopamine, (Dopamine is often called the "feel-good" chemical-a crucial neurotransmitter, a hormone in the body. It acts as a messenger between neurons. primarily driving the brain's reward system, motivating you to repeat beneficial or pleasurable behaviors like eating, socializing, and achieving goals) No finger prick or other monitor reading warns you that you are low. When you are actually empty you are SUDDENLY off the cliff and its not a gradual fall. Some people call it their “off” periods but for me I would call it a brief descent into h__ __ __!-my legs give out, my stomach cramps, my mind goes into a drunkin state with confusion and slurred speech and I pray for respite. It lasts approximately 20-30 minutes but can go on for an hour or longer, Please understand I share simply for your knowledge not for sympathy. We PwP patients do what we can to extend our“on” periods when we actually match the dopamine levels with what is needed in the body. Oh how lovely to feel good, to sleep longer than a 90 minute period, to read a novel with steady hands and walk without a cane, to laugh at a joke, participate in a meaningful conversation-in other words be a real human!

Recently I learned that most Parkinson Patients are also HSP. . What is that label? Highly Sensitive Person. Yes ,it really is a “condition”! For more detailed information check out the book: The Highly Sensitive Person by Elaine N. Aron “How to thrive when the world overwhelms you”

It is a common trait for Parkinson Patients, something else to “struggle with”. Yet just knowing this classification existed was empowering. I felt validated when I turned up the thermostat every 5 minutes or refused to wear an item of clothing in the closet because it recently felt tight; why going into a crowded church or Costco made me break out in a sweat; feeling more and more shy with groups I used to lead; why sirens give me chills and coarse fabric causes me to throw the item across the room; why being hungry causes an extreme reaction in me-:

I’m a HSP and proud of it!! My caregiver, my hubby, has learned to carry an extra sweater as well as a small fan!. 

So where am I going with this state of affairs? I’m going to Paul and verse 10 of chapter 12 of 2 Corinthians..God’s power is really made perfect through our weaknesses.( And boy do we have them). We can’t do it on our own. We need the power of the Holy Spirit! Truly when we are weak we really are strong! 

2 Corinthians 12:7-10 

“…a thorn was given me in the flesh, a messenger of Satan to harass me, to keep me from becoming conceited. Three times I pleaded with the Lord about this , that it would leave me. (But Jesus says,) “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.”

For the sake of Christ, then I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong.”

The Handicapped Placard

The Handicapped Placard

“He will yet fill your mouth with laughter and your lips with shouts of joy.” Job 8:21

On one of my more difficult days I frankly asked Hunter {my sweet husband of 54 years), “ What do you get out of this angst?” He cocked his head looking intently in my face and whispered, “One smile. If I can coax one tiny smile onto your face I am happy and fulfilled.”
And believe me he is generally successful, which is quite the feat considering he is married to a straight laced German whose laugh lines are pretty smooth. Yet his goofy Italian stunts are hard to resist!

Case in point:

Last week I had my yearly doctor exam with my general practitioner. At the close of the visit I requested the necessary paperwork to obtain a handicap placard. Since I do not drive anymore it is probably not necessary because Hunter generally drops me off at the door of wherever I want or need to enter. Yet there have been a few times in gusts of wind or rain downpours it would have been less stressful to simply park close then to attempt a quick jog, which I don’t do well, Hunter will run to the truck and have me wait but I generally don’t wait well, so out in the “gulley-washer” I waddle.
(I also should note that since neither of us appear handicapped, on first glance, Hunter HATES to use the dreaded CARD hanging on the mirror!)

To get back to the story :

After the doctor visit we drove to the BMV, filled out the necessary information, and left with the coveted cardboard handicap placard, which I immediately tucked under the insurance papers in the glove compartment.
A few days later, over the busy Memorial week-end we visited our daughter in Rochester, Minnesota. While there we went grocery shopping at the local Hy-Vee. I pulled the placard out of its resting place, excited to try out this little gem, while Terri began to park the truck. Instead of near the front glass door Hunter directs his daughter to park in the furthest possible parking space in the entire business?? “What are you doing?” I question. He looks at his daughter and laughs,”This is how you use handicapped placards in Minnesota!”

As I smile he reminds me that PwPs are suppose to exercise and this is my exercise today! it is not quite so funny as we wheel a cart full of groceries back to the car when done shopping. To add just a bit more humor to the outing while Terri loads the groceries in the truck Hunter proceeds to gather up all wayward carts in the entire parking lot as though he was an employee wrapping up his daily chores.

Another smile “quest” accomplished!

I share this silly story to encourage each of you , both PwPs (People with Parkinson Disease) and care-givers to smile at least once an hour and laugh at least once a day.
It’s a gift from God.

I recently read in a Parkinson brochure “Laughter provides significant benefits for Parkinson’s disease, aiding in both coping strategies and symptom management. In addition, it helps to manage stress,”

So fellow PwPs lets take in a funny movie or smile at a corny joke, and know we just swallowed some of God’s good medicine!

P.S. Today, before blog publication, we were in Target buying hair product for me when I heard Hunter imitating a male moose as he “hunted” for the can of mousse!
Another day of smiles!!!

“Parkinson Disease is not a linear function?????”

(Part 1)

What?

“What are you talking about dear? “ This statement comes straight from the mouth of my science-loving husband. We were having a discussion concerning my disease or rather to be totally honest I was complaining about the ups and downs of this particular malady. One moment you feel empowered to “take on the world, or rather just to go shopping by yourself without the aid of a cane”. You skip to the first door threshold, freeze and end up on your knees, grabbing for the walker admitting defeat once more. Looking up into the sweet face of my caregiver as he mouths “remember Parkinson Disease is NOT a linear function.”

As best as I can understand a linear function resembles a line which  generally travels straight down a hill in one direction. A non-linear function line is a twisting, pattern-less line. Parkinson Disease would be illustrated as non-linear.

Parkinson Disease is a bully. He does not just gradually slow you down but pushes and shoves you around; one day tripping you so you fall on your face, while the next several days allowing you some feelings of normalcy so you can make a few plans only to laugh out loud as you get stuck in the mud and all those precious plans fly out the window. Parkinson Disease (PD) has no rhyme or reason,; no sympathy or concern. I believe Satan latched onto it when discovered solely to wreck havoc in the body in as many ways and places as humanly possible, It’s a cruel game he plays for his own bizarre entertainment.. like a twisted line!

 

“Parkinson Disease is not a linear function?????”

(Part 2)

OK , so I have to accept the unplanned, deal with the unexplainable, but what can I do to make this more bearable? For several days I have rolled this question around in my head until the lightening bolt strikes and it all sounds easy-make my burden lighter and I might actually float down the curvy road instead of bouncing.surprising Satan along the route. By this I mean take things out of the backpack we all carry on our backs and it will be lighter. So I sit with paper and pencil and list 10 possibilities-different for everybody.

 

1. I can take out plane rides and travel oversea. (seen enough of the world)
2. I can take out my drivers license.(Hunter can do the driving.)
3. I can take out several foods-(like fats, sugar ?, steak).
4. I can take out style in clothes-(no zippers, buttons, tight clothes-all for comfort).
5. I can take out parties-(can’t handle loud noise and lots of motion).
6. I can take out hiking and biking long distances. (A short distance showcases God’s beauty)
7. I can take out most restaurants. (Maybe an ice cream cone now and then).
8. I can take out 8 straight hours of sleep. (2-3 hours then wake briefly for meds)
9. I can take out rolling on the floor with grandchildren (I’ll play with them on the couch)
10. I can take out going to the movies (wait until the show broadcasts on the TV)

It’s a good start and I already feel lighter. I’m reminded of a Bible verse which says: 

Philippians 4:6-7 (NLT): "Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. Then you will experience God’s peace, which exceeds anything we can understand…”

I may not get all I want but He provides what I need and gives me peace. As we enter the twilight years isn’t that truly what we crave-peace and a deep relationship with our creator and savior?

Yes-That’s what I need and truly want-peace. Peace to sit and enjoy a sunset, to hear a waterfall, to rock on the porch in my rocking chair, to say thank-you God for this day and what you have planned for me tomorrow, even if it is non-linear!