My Journey with Parkinson’s Disease

My Journey with Parkinson’s Disease – Both A Physical and Spiritual Journey

By Don McDaniel

Introduction:

My intent or purpose in writing this is to give Parkinson patients and their family and friends a better idea about what this disease is, to better understand what the patient is experiencing and feeling by sharing first hand of a Parkinson’s patient, me.

I will first explain what Parkinson’s is and what causes patient to experience those physical symptoms, limitations, and emotions. I will then share my personal experiences and history. I am hoping and praying, by doing so, God will use this to both give some helpful insights and suggestions, therapy techniques, and suggestions that will encourage and make a positive difference with patients and their families, caregivers, and beloved friends impacted by this disease specifically. So, let’s start by defining and learn about the Illness called Parkinson’s Disease.

What is Parkinson’s Disease? Parkinson’s is the body’s, specifically in the brain, inability to produce adequate amounts of dopamine. Dopamine is a chemical produced in the brain and used by the body to help/enhance transfer of commands from the brain to body muscles/limbs/functions, etc… The visible results are tremors in arms and/or hands, legs and can impact speech and ability to run or do physical work or even walking. Patient can experience dizziness and even find it very difficult to control ability to stand up and balance

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stability without holding on to a rigid object. Driving or operating any kind of equipment eventually can and will likely become difficult. I will go into more detail later, so for now just realize dopamine is necessary to give a speedy and direct path for brain generated command signals to go directly to muscle or organ. Sounds a bit scary and symptoms should not be taken lightly nor ignored, but there is good reason to have hope and comfort if you are going on this journey too. You are not the first and need not be on such a journey alone. Exercise that gets heart rate up stimulates production of dopamine and may be sufficient in early stages of Parkinson’s as well as physical therapy to help develop muscle memory to help body more effectively use what dopamine is available.

Depression and bad dreams and even seeing people or objects that are not there or real, especially in poor lighting are also common with patients especially as disease progresses.

Lack of dopamine is kind of like a TV connected to a digital antenna cable with a poor connection(reception) or a short. The surprising thing is the body can function normally with as little as 30% of a healthy person’s level of dopamine. Muscle memory helps by allowing the body to repeat the same motion without conscious thought in play. This is why by the time the symptoms become strong enough to be noticeable or beginning to limit normal life activities, Parkinson’s or level of dopamine has been dwindling for 5 or 10 or even 20 years unnoticed and un-diagnosed. In fact, Parkinson’s is diagnosed more by how many of the 12 symptoms patient is experienced instead of by a blood test or scan The good news is Parkinson’s is not a terminal disease by itself but can and does make it easier for many life threatening genetic or life style or environment illnesses to overtake Parkinson’s patients due to limitations limiting proper diets or patient care or exercise or…

Progression through the 5 stages of Parkinson’s varies with age and health and life style as well as mental discipline and willingness / determination to fight this illness, so diagnosis can be difficult and may change over years of treatment by a skilled neurologist trying various treatments and medications results in positive or no or even negative effects on patient’s symptoms.

Well, are you ready to learn the 5 stages of Parkinson’s Disease? First be assured the progression is over an uncertain number of years and if you have experienced Christ’s mercy and forgiveness and include Him on your journey with Parkinson’s, I can promise you a rich journey because Christ will not allow you to tread that path alone. I say that from personal experience with tears running down my face as I write this.

So, here goes:

Stage one:

Symptoms are mild and can be days or weeks apart so every patient is different. Common early symptoms are tremors, hand rigidity and inability to move an arm or leg (called freezing) but

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easily managed with inexpensive medicines. Symptoms are mild enough to be easily ignored or noticed.

My first memorable experience was about 30 years ago when I couldn’t get my 5-speed manual transmission Dodge Omni into 3rd gear. I couldn’t get my left foot to disengage the clutch and couldn’t get my right arm to find 3rd gear. Keep in mind, I was driving the little red Omni I bought new in 1989 and probably had 60,000 miles by 1994, and only had manual cars so would guess I had driven 120,000 miles in a floor stick shift car by then. This experience only lasted a few seconds and never repeated but I still remember it. I would guess by then my dopamine level was down to 30% and had no other symptoms like that for a number of years. I was probably entering stage 1, but wasn’t diagnosed until 2014. I can recall finding it more difficult to focus at work and fatigue so decided to retire in 2012. At that time, I thought it was just normal aging, but likely was slow depletion of reserves of dopamine that started in early 1990’s and reached mid stage 1 levels by 2014 when finally, was diagnosed and began treatment.

Stage 2:

Some loss of facial expression, some speech impairment, inability to speak loudly or clearly for long periods of time, stiff muscles, hunched back, and slow movements. Accurate diagnosis is possible and easier if tremors are present but more commonly progress at a slower speed.

Also, symptoms more commonly progress first on dominant side. In my case, I’m left-handed and have had a LH tremor, so illness has progressed slower and LH side more than RH side. Patient can function in limited ways but close to normally. Patient may be perceived as showing normal signs of aging but still be able to function well with medication and proper exercise and basic physical therapy techniques. This brings me to a crossroads, so first I want you to prepare yourself and maybe get a loved one near and say a prayer for I’m about to walk you through remaining steps of progression of the illness called Parkinson’s Disease. The progression can be slowed but not stopped outside of a divine miracle of God’s touch on the patient. There are a number of other neurological illnesses that cause many of the same symptoms as Parkinson’s but not all and may exhibit more dominant psychological or psychiatric symptoms.

Stage 3:

The symptoms become obvious enough that strangers recognize something is wrong. Doctors often try to determine how quickly patient can regain balance control, avoid falling, after standing behind patient and pushing forward on patient’s shoulders. Driving a car is more difficult, patient uses a cane or walker much of the day, and fatigue becomes more severe as time goes on. Patient, however, usually are still able to dress, shower, prepare meals and feed himself, and do simple tasks without assistance. However, more and more routine tasks require help or delegated to. Muscle weakness, stiffness/rigidity, and pain becoming more

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severe but manageable thru medication and physical therapy. This stage is where I have been at for at least 2-3 years, but there are days or hours I think I’m closer to stage 4.

Stage 4:

Patient is beginning to lose independence and is beginning to rely more and more on caregiver for assistance in daily tasks and personal care. Walking and standing are becoming more problematic and a walker becomes necessary to get around due to lack of sense of balance and physical strength are fading. Bad dreams may become more common and seeing things that are not real or present. Depression may take a foothold in the patient. Faith in God and a personal relationship with Christ through prayer, Bible study, and support of Christian family and church are making a huge difference with me and am sure will for you too if seek His Grace and Help.

Stage 5:

Patients in this stage are no longer able to live and function without experienced medical assistance and nursing care even for daily functions. Deep Brain Stimulation (DBS) may become necessary since all feasible medical options will no longer help relief symptoms, while new symptoms such as patient may not be able to swallow chewed food or pills. Other symptoms like depression, seeing people or things not real, bad dreams, even dementia, which shows up more likely in 5th (last) stage.

Comments/Personal Experience/ Observations/Thoughts:

It is depressing to face reality and imagine enduring such a life described in the above “stages”. So, I want to assure you and remind myself that there is good reason to not only have confident and joyful hope, but assurance of God’s abiding hand of strength-comfort-an eternal home in Heaven, and so much more to any and all who repent of their sins and accept Christ as their Lord and Savior.

It is so human to look at those more active and healthier, especially those a few years our senior, and can’t help feel a bit cheated and a bit jealous. But it is equally true that many others even younger experience much worse pain and suffering along with a much shorter lives. Yet some live enduring great pain and suffering but with much joy and strength because of Christ.

Joni Eareckson Tada is one of them I so appreciate. At age 17 she experienced an accident that left her paralized from the neck down. She endured pain and many health issues including breast cancer during the 60 years that followed to present as a paraplegic.

Joni went through the normal stages of grief, including seeking God’s help to either cure or take her life since the future looked so dark and painful. Times and personal accepting Christ as her Savior and developing a personal and solid relationship with Christ, He empowered her to start a ministry “Joni and Friends”, evangelize and share God’s Good News to people all over the

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world by personal visits, radio, TV, written books that has drawn literally millions to accept Christ’s life transforming gift of salvation.

Even now she has a team of faithful caregivers, including her husband, that have and continue to enable her to continue her work, but she does admit she is growing anxious to get her new body when Christ returns or takes her home.

The way I see it, some enjoy good health and long life, others experience crisis in health or …. And then healed by God. Still others endure lingering suffering and even early death with little evidence of God’s healing touch.

Whenever illness or personal or family crisis of any type come into our lives, we should seek God’s help and intervention and healing. Joni certainly did that until God spoke to her in her spirit but told her He would walk through her journey hand in hand with her.

Joni has a level of credibility, with her handicap, and a powerful anointing because of how she has thrived so long with such a disability. She is a more powerful evangelist and influence than any else has been. Not the least is her impact as an advocate for the handicapped as well. As high as her sacrifice has been and continues to be, she still praises her God with a joyful and passionate soul and is still convinced that the fruit is well worth the sacrifice.

I find her example to be inspiring but overwhelming at the same time. I can’t imagine enduring such a handicap enduring pain and without blessing of mobility. Yet she has been able to drive a handicap equipped vehicle and even paint and write using her mouth and a brush or pen or stylus.

I encourage everyone who is reading this, especially those who either have a handicap or are a caregiver for a handicapped loved one, to read some of Joni’s books or listen to her program “Joni and Friends” to get acquainted with her and her testimony-journey-insights and ministry.

Many have prayed for my healing and still are. One dear friend and brother in Christ in my home church reminded me he was still praying for healing even though has been 11 years since I was diagnosed. I so appreciate that but shared with him a recent realization. God reminded me of one of Joni’s books she shared her journey with pleas for healing. God asked her if she would remember her healing 10 years after if He healed her? How about 20 years after? She then realized He was asking her to patiently wait. She is still looking forward to her new body and new heavenly home, while continuing to show and tell her story and witness to the handicapped and suffering and lost.

Well, I have to say Parkinson’s has become far more a blessing than a dreaded illness for me but have to admit there are days when weight of carrying is heavy and would love to take it off a few days. It is during those times; God often speaks to my soul in a dream or a movie or an act

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work of kindness but even more often a story or word of scripture or a sermon to remind and assure me He is returning soon and stay the course awhile longer.

I also have noticed often I can barely move and medicine doesn’t help, and then I start walking normal without a cane and able to carry boxes without falling due to weak balance. All too often when that happens, the first thing that comes in my head is “I got to get this project done or move this or fix that” instead of stopping and giving God a big “thank you” and praise. Would I be praising Him 10 or 20 years later if He healed me? I hope so, but realize I too would likely get used to it and take it and Him for granted. I would rather be grateful and handicapped than ungrateful and whole. How about you?

This journey, for me, began in 2014 when first diagnosed with Parkinson’s. It came to a crossroad when I was persuaded by amount of time it was taking to keep our home of 40+ yrs, fixed up. So, for a number of months, we did some needed repairs and upgrades. A lot of prayer and family discussions ended with us putting our home on market. It sold rather quickly giving us barely enough time to get rid of 40+ years of accumulated stuff to dispose of. We moved into next door duplex we owned that has 2 apartments. We then did a number of upgrades and made 1st floor apartment handicap accessible and worthy of a place for us to live through our sunset years.

God’s wisdom and compassion prevailed because we didn’t know what and how circumstances were going to change. I also began to realize that Parkinson’s was helping (forcing me) to hold material possessions more loosely and relationships with others (and with Christ) more closely. Parkinson’s is a humbling illness because the need for other’s help is necessary, but also less stuff also means less time needed to maintain and manage that stuff. Likewise, a realization that my opportunity clock to witness and be a reflection of Christ to others was winding down. By that I mean if take age 90 as a optimistic life expectancy, then I only have 16 years left. If 85, then only 10 years. When reflect what I was like physically 16 years or 10 years ago (2010 or 2015). For me 2015 was year I lost one of my closest brother in Christ. He was 72 and I am 74 now.

I share this because all of us are only living because of God’s mercy and love. Life is a precious gift that can’t be extended even 1 second by anything we can say or do. Sure, physical life may be extended medically or by healthy eating and exercise, but we know heart attack/stroke/cancer/accident/…. and a long list of others can and do cause death often without warning. The likelihood is obviously much greater with passing of each year.

I know, I don’t need to be so cheery. Ok, but I realize:

  1. I had to much stuff either taking too much time to maintain or getting in way of what I needed, but even worse, getting in the way of opportunities to share a listening ear and reflect Christ’s love along the way. .
  2. I have lost considerable ability to keep up the pace I had 10-15 years ago.

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  1. I was diagnosed with Parkinson’s in early 2014, 11-1/2 yr. ago. Since 11-1/2 yrs. From now will be early 2037, I will then be 86. Need I say more? Well, what does your numbers look like? I don’t have much time to reach those I know who don’t know Him or asked for His available gifts of forgiveness and redemption.
  2. Evidence is mounting that Christ’s return is eminent. It certainly is closer than it was 10 years ago.

When I started my blog “donsdevotions.com” in 2016, I had been already keeping a devotional journal and had been sharing it by email with family and church family and a few others through word of mouth. Our daughter, Debbie, had given me a devotional journal Christmas 2011 with request to use it and give it back to her when completed to be a legacy to share to future generations.

As I did this, I discovered some amazing things:

  1. My relationship with God was growing deeper and richer and closer.
  2. I enjoyed writing in that journal more than when I first started.
  3. God redeemed the time invested in writing and distributing to others while still managing a full-time job and family – church – community obligations.
  4. The list of others I was distributing updates to was growing.

It was during the early years Christ revealed to me in a dream that He would use this journal to reach many, but more would be reached after I’m gone than before. I often would reflect and wonder what that meant and how that would happen, but I knew results would be impacted by how diligent I was to do it daily both in writing but even more in my time with Him daily seeking His input on subject / content.

I recall when I had such a dream in late fall of 1976. I had just started dating my future wife Arlene when in a dream one evening God told me something serious was going to happen but I would come out stronger and wiser if stay true to Him. That Friday I got the “swine flu” shot. I did some body work on Arlene’s car and had a co-worker from work repaint it.

Anyway, Sunday night I told her I wasn’t feeling well and she said sounds like how her dad felt just before his heart attack. By Monday I was in hospital recovering from a reaction to that shot in the local hospital. Reactions to shot were rare but a few, including me, did. Heart lining, sac, was inflamed and pressing on my heart. After 3 months of recovery, my body was as good as new, but much reflection and prayer followed, which also impact a future marriage of 47 yrs. so far. God’s timing is perfect!

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I’ll spare you all the details for now, but simply say I grew in my faith and love for Christ much because of that time and experience. That dream came true, but He knew I needed refined.

HOW IS PARKINSON’S TREATED AND WHAT CAN PATIENT AND CAREGIVER DO:

  1. Make sure you have all your medications and time / frequency written down clearly and helps doctor and caregiver and even patient clear about what and when for all medicines. Note, many of the Parkinson’s medications are less effective if taken too close to meal times. At least 1-1/2 hr before and after meals with protein.
  2. Medications most common and prescribed are designed to replace deficient dopamine or to help the body absorb and use the dopamine medicine.
  3. Exercise is important to get heart-rate up. A faster heart-rate stimulates production of dopamine. This is more effective than medicines containing dopamine because body can’t use it unless it comes from the brain to the body.

a. Walking with long steps and briskly helps but any movement will help some when patient has more limited mobility.

b. Work at strengthening arm and leg muscles and abdominal muscles.

c. Learn to focus when having difficulty moving leg and arm and hand. “Freezing” is a common issue (not able to move). Overcoming requires focus without distractions. Driving a car requires no noise or conversation to keep control of steering and braking. Freezing can happen when stop to talk to a neighbor. If freezing happens when stop walking or distracted, taking one step back often will help.

d. Physical Therapy is a valuable option because it gives focus to muscle groups weakened from limited movements or tight from freezing or tremor(s) or spasms. Specific expercises to address limited range of motion, muscle weakness, freezing, and balance are among the most common

  1. Many therapy businesses offer or can direct patient to exercise groups especially for Parkinson’s patients. Such groups create an atmosphere of acceptance and friendship and support that helps a great deal too.
  2. Fatigue is also a common problem, but managing brief afternoon naps can help to and refresh both patient and caregiver.
  3. Brisk walks with a friend are good therapy, but walking with both arms swinging and with big steps is both easier to do and uses less energy and exercises more muscles too. If watch a healthy person walk and then a parkinson’s patient, you will see what I

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  1. mean. Swinging arms while listening to music with a defined beat helps a parkinson’s patient walk more normal and easier too.
  2. It is important to have primary residence and work sight handicap friendly. That means strategically placed grab rails and shower controls and tub chair in place before patient needs them. Physical Therapist and Occupational Therapist should be able to make proper recommendations.

WHAT HAVE I LEARNED ON THIS JOURNEY THUS FAR:

  1. GOD IS FAITHFUL AND WANTS THE BEST FOR US BUT HE OFTEN NEEDS TO PREPARE US WITH CHALLENGES AND HARDSHIPS TO HELP US GROW AND ACCEPT HIS BEST (ROMANS 8:28, JEREMIAH 29:11). For we are God’s masterpiece. He has created us anew in Christ Jesus, so we can do the good things he planned for us long ago.” EPH 2:10
  2. DARK OR DIFFICULT TIMES AND TIMES OF CRISIS ARE ALSO OPPORTUNITIES GOD WILL USE TO EQUIP US TO DO THE WORK HE MADE US TO DO (and still be able to lend a helping hand to another in need while still in those times).
  3. GOD’S PURPOSE AND TIMING IS PERFECT AND WILL PROVE OUT TO BE BEST FOR US BUT FOR MANY MORE TOO.
  4. SICKNESS – HARDSHIP – TRAGEDY COMES TO ALL AT SOME TIME AND AT VARIOUS INTENSITY BUT, GOD USES HIS FAITHFUL CHILDREN TO DO SPECIAL TASKS OF ETERNAL WORTH AND IMPORTANCE TO HIM! BUT NOT ALONE. INSTEAD, HE WALKS HAND IN HAND WITH EACH ONE WHO KNOWS AND OBEYS HIM.
  5. GOD WALKS WITH US HAND IN HAND ALL THE WAY THROUGH DARK TIMES. THE EXPERIENCE BUILDS A RICHER RELATIONSHIP FOR US WITH HIM AND GIVES US GROWTH AND RESILIENCE IN FAITH AND CHARACTER (PSALM 138:8)

CONCLUSION:

If Joni Erickson Tata can endure what she has for more than 60 years and still have the passion and love for God necessary to minister to others, than we should learn from her example and life.

I still think if God would have allowed me to choose an illness I would have to manage in my senior years, I dare say Parkinson’s is far better than most like Alzheimer’s or severe strokes or ????

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But wait. Did you notice early in this writing that one of the advance symptoms is a form of dementia? OK, I get it, Parkinson’s is no picnic either but it does force us to learn to depend on others and also give them a chance to help and see how we are dealing with illness. Likewise,

God can use it or any illness or crisis to get us to get our affairs in order, with most important being to start or focus more on ways to draw closer to God and develop a deeper relationship with Christ. There is no decision more important than to ask Him to forgive our sins and come into your life. Then to let Him build a relationship with you by exercising with daily prayer. Pray often and talk to Him in your mind and heart. Let Him speak to you by reading your Bible and meditating on scripture. Fellowship with other believers, worship and praise privately and also in with other believers. Find a church that will disciple and help you grow in your faith.

Everyone on earth has or will die. Some only live for a few minutes, others for a short time, but most 50-70 years. A few make it to 90 and many less reach 100. When that time comes good deeds will not get us into Heaven. John 14:6 tells us no-one is, nor can be good enough or earn that privilege. Instead God chose to send His Son Jesus to be our sacrificial lamb to take the guilt and blame upon Himself and accept our punishment by dying on the cross. He rose from the dead 3 days later, but the price for our forgiveness is paid and available. We only need to ask for that forgiveness. (I JOHN 1:9).

People notice how well individuals deal with dark times. Christ gives those who accept His forgiveness and salvation confident hope and faith that He will take care of them in best way and time. Such hope and faith can’t help but generate a joyous heart and soul and attitude of gratitude and praise to God even in the midst of suffering. (JAMES 1:2-3)

Well, I didn’t get a chance to pick Parkinson’s. I too did ask the Lord a number of times for healing and a dear Brother in Christ in Pennsylvania was among many to have prayed for healing for me over a number of years. However, I know He knows my desire for healing but not at the price of neglect or forgetting His covenant to me. I was resolved to live out my remaining years in my old but newly remodeled double boarded house (which was in my family since 1890) and worship in the church my family has worshiped in just as long.

But God had different plans and goals for me to follow. Plans that include Parkinson’s but only a little while longer but certainly not in Heaven. I believe God wanted me to free up time and energy for a task not clear just yet but something I will still be able to do. Selling unneeded things and property can be liberating but adds flexibility to future personal, family, and ministry needs. Only God knows what but I believe He has guided my decisions thus far.

I hope and pray this has helped and encouraged you and is drawing you closer to God, who loves you than you realize. He proved that on the cross and continues to show that love to those who put their faith in Him. He is warning us that we are running out of time. He is coming soon. We will discuss that topic soon, God willing. In the meantime, if you have a question or desire to read more, you may email me at: “mcdanieldonald769@gmail.com” or go to “DONSDEVOTIONS.COM” to access previous devotions.

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