Author | Speaker | Advocate | Search and Rescue Trainer
Wanted to let you. know that Dan and I are riding in the Tour de Victory fund raiser this Saturday and wanted to give you the opportunity to join us by either joining the team (Team Move That Mountain) or by donating to the Davis Phinney Foundation.
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Thanks so much, Patti and Dan
My new book, CHRONIC Hope is now available to purchase online at Amazon! This book has been years in the making, if not my whole lifetime. In the intro of the book, I share about many of the injuries, surgeries, trials, physical ailments and deaths of loved ones that I have endured and how the Lord has been faithful through them all. His Word has been a source of hope.
I have learned that medical facilities are one of the best places to better appreciate this “Chronic Hope” we have, that our God is right there with us in the midst of our pain.
One of the main reasons I wrote this collection is because some people wonder, “If God’s Word is so applicable to an injured or ailing person, where do you start reading?” Genesis 1:1 that describes creation? I know you would rather not read about bulls being slaughtered and having their blood splashed on the temple altar. That is a little too close to home when you are hospital bound. And who wants to study how Satan infected Job from the soles of his feet to the crown of his head; and then Job took a piece of broken pottery to scrape himself as he sat among the ashes? Probably not good dermatology protocol.
However, there are many, many Bible verses that can be a source of great comfort to the wounded and healing. My dream is that you will be able to select chapters from this book that most appropriately address your unique needs, or those of your loved ones. Obviously, this is not a comprehensive list, and it is not my intent to rewrite the Bible; I would never do that. But perhaps, as the occasion presents itself, you will be able to read chapters from “Chronic Hope: God’s Redeeming Presence in the Midst of Pain” either to yourself or one of your loved ones. I pray that you will be comforted.
I have tried to categorize and separate Bible verses topically. I have also included song lyrics, excerpts from other books, poems, stories, quotes from famous people and some not so famous people, myself included.
I hope this book is a divine resource for you if:
Thank you for ordering, reading, and sharing with others. My hope is to get this in as many hands as possible to offer a “Daily Infusion of Hope” like one of my friends noted:
Oh, and please be sure to leave a review! This helps others make a decision to purchase it as well and may help with search views on Amazon. Thank you so much! May God bless you and strengthen you in your spirit each day. He is with you always.
I hated having to rip out my tapestry. Just when it was starting to look like something nice, I realized that I was heading in the wrong direction.
I had determined that I would volunteer for every Parkinson’s clinical trial and study I was eligible for. But, did I ever make a mistake! It seemed so promising. Researchers wanted to repurpose a drug that had been FDA approved for 30 years for a different illness. They felt certain that this one would remove the folded alpha-synuclein proteins from the blood, which would, if not cure, at least reduce symptoms and slow down the progression of PD.
There was only one big but – I would have to go off of Pramipexole. The warnings had not been exaggerated. Supposedly, Pramipexole is as addicting as Heroin and the withdrawal symptoms as bad. I could not sit still for more than a few minutes; sleep was out of the question. The only relief I got was from epsom salt baths and massages. If that wasn’t bad enough, we also had to make frequent trips down to Denver for blood tests and symptom monitoring.
Supposedly the trial was successful, and yet we have yet to see Phenylbutyrate being used as a PD treatment. So, I guess it’s back to the labs for the white coats.
And back to the tapestry for me. My next threshold would be to try my hand at biking 79 miles in the Copper Triangle, which benefited the Davis Phinney Foundation for Parkinson’s. I figured that if I could sew a tapestry, I could certainly bike over three mountain passes with an elevation gain of nearly 6,000’, the steepest grade being 9.9%. Well, maybe in my dreams.
But I had not trained at all – nada. I had never biked 79 miles all at the same time – not even in the same week. Who was I kidding? Maybe I should just get back to my tapestry. After all, I was well past my ski patrolling and marathon running days and was certainly no spring chick. Little did I know that this action would not clash with my tapestry but instead implement a color and pattern that would definitely complement what had already been sewn.
I started in Minturn, about halfway around the course. I had the privilege of meeting a handful of Team DPF bikers at Vail Pass including Davis himself. This was the beginning of an adventure that would forever change my life and the design of my tapestry. Turns out we have biked the Copper Triangle another five times and been able to raise some funds for DPF.
But the significant takeaway is that Dan and I would both learn so much from the Foundation and be extremely challenged in our walk with Parkinson’s. I have learned there are so many ways that we both can live better than we ever imagined when I was first diagnosed with Parkinson’s.
I’m taking a liking to where my tapestry is heading. Maybe I should start developing my domestic sewing skills at the young age of nearly 70. 😉
In my previous life, I trained and handled search and rescue dogs to locate victims of drownings, disasters, avalanches, and hikers lost in the wilderness. It’s a strange relationship that develops between a search dog and his handler. When the dog has located his subject, he alerts. Hopefully, this alert is discernible to the handler. However, there are times when it’s not so obvious, and the handler has to trust that she’s trained her dog well and that he will fulfill his assignment.
I have found this to be true in my PD adventure; I need to know who I can trust and who to steer clear of.
I have learned to be skeptical about those who promise a cure in a pill or a myriad of supplements. I hate to think how many millions of dollars people with neurodegenerative diseases have sacrificed when we thought that there was a glimmer of hope found in an old ancient recipe or a secret formula hidden through the ages. I hate that there are those who take pleasure in this type of contemptuous and malevolent business.
However, as my search and rescue experience taught me, there are those who can be trusted. We can, with careful discernment, place our confidence in years of schooling and education, surgical and patient appointments, big white lab coats and little white mice, care partners, and families that have survived generations of diseases and disturbances. There is nothing new under the sun. In the past those who have gone before us have survived; and we will too.
Life’s been hard lately, especially last Friday. I had heard my Parkinson’s brothers and sisters refer to the ending of a honeymoon period. First of all, I could not imagine a honeymoon period being associated with the onset of Parkison’s. That seemed to be an oxymoron to me. But last Friday I got it. I had not exercised that day yet and my burning mouth syndrome was raging. I tried to journal all this and my handwriting was so illegible that it was barely discernible.
Like the PD honeymoon, I could also not relate to the depression thing that many with PD experienced. Well, I’ve seen the light, and it ain’t pretty. In the midst of my “dark Friday of the soul,” I admitted that there wasn’t much I felt capable of doing besides crying; crying had never been my thing before this. I felt worthless, especially to my family. I was overwhelmed with the idea that I was a huge burden to the people I loved and questioned whether I really had a purpose here on earth. But I want to make it clear that suicide never was and never will be an option from my toolbox.
Well, I lived to see another day, and that day was far better than the previous one. I remembered my mantra – “Trust Your Dog.” Even more than my faithful dog, my family and friends, medical support group, Parkinson’s support group, and God have all proved themselves worthy of my trust.
It’s hard when it seems like it’s always two steps forward; one step back. It’s hard when you’ve barely started treating one symptom and another one pops its ugly head up. But I think we were created to live in community. We play a special role in the lives of others that we may not be aware of.
When a search dog handler has resolutely convinced herself that her search dog has been well trained and knows his stuff, there is a huge sense of relief. It helps to know that it’s not dependent on me to escape this maelstrom that I’m in. This is true in trying to navigate the dangerous waters of Parkinson’s. I am surrounded by a support group more than capable of helping me to captain this ship without fear of capsizing. My vetting process has revealed them to be individuals of integrity who only want the best for me. They are worthy of my trust.
Am I developing perseverance from all these trials? Am I developing a peace in my life that’s hard to explain except for Parkinson’s? Can I become more patient and tolerant of other people as I develop patience and tolerance for myself? Most of all, will I fight the good fight and realize that I must celebrate every little victory and find an inner joy that is struggling to get out?
Just a few weeks ago I learned, finally, of a treatment for my Burning Mouth Syndrome (BMS). BMS is a condition where all of my mouth linings (oral mucosal) are inflamed. It feels as though I ate a really hot pizza or drank scalding coffee; and now it has progressed to the point where it is constant except when I am sleeping. For some reason I continually lick my lips and for some reason, it’s very difficult to smile physically, maybe because everything is so swollen. But I can tell you that in my innermost being it is difficult to smile as well.
It has been a difficult mission lately as my search and rescue dog, Hasty, and I try to find a treatment to relieve my BMS. My husband and care partner, Dan, is our navigator, and his job is to plot our course on a map and keep us on task. I have given Hasty a scent article that gives him the scent he is to locate. That scent does not smell like the chewing gum that I have to chew incessantly in order to keep from licking my lips. It is not the myriad of mouthwashes I have tried. It is a metallic or rubbery taste and smell that will not go away.
The scent we are searching for is hope. We think we may have gotten a whiff of hope as we approached “the cave” just last week. I watched as my dog’s tail raised up high, and I saw him take an extraordinarily large snort of something that smelled promising to him. Hope goes by the “name” of Prolotherapy and it involves 6-10 injections of simple dextrose into the cervical spine at the ligament attachments to the bone, with the goal of tightening chronically stretched-out ligaments. It is believed that this treatment also frees up the vagus nerve and restores it to its intended role.
The thought behind this treatment is that many people who suffer from BMS have a history of cervical spine instability. That’s the case for me – I totaled my car in 2003 and had to have my neck fused. The neck injury causes compression on the vagus nerve and other nerves in that location causing problems with cerebral blood flow. This then, it is hypothesized, creates burning in the mouth.
There are many naysayers I am encountering as I enter the cave of Complementary Alternative Medicine and Hope. Most of them tell me that the only thing that works for BMS is anti-depressants.
With my limited ability to speak well, because of an overly stuffed mouth, I command my dog to focus, and I re-scent him on what he is looking for. It is difficult for our team to remain on task. I get tired and want to give up at times, and yet I know that I have to hold on to hope as I get closer and closer to the cave entrance.
Just before entering the cave I get discouraged learning from another naysayer that the prolotherapy may cost upwards of $18,000. Then Dan reminds me that I cannot live with my mouth in so much pain. I’m afraid that he bears the brunt of my pain episodes. He and other members of my support group have been helpful as I try to distinguish between valid treatment options and those of practitioners just trying to make a quick buck.
Hasty, Dan, and I will spend some time entering the cave, and we’ll stop to rest and do some neck exercises, and as always we’ll discuss the options available to us. Maybe that will help some. I hope so.
My ordeal is most likely disappointment with myself. I am gradually becoming more and more convinced that in order to strike down this spirit of disappointment I must take up the sword of Chronic Hope, I must recognize and celebrate every incremental victory.
Sometimes, if I wallow in my pain long enough, I find that the muck of it all covers my eyeballs, and all I can see are my insides. It’s not a pretty sight when my insides are filled with resentment, self pity, bitterness and anger. My challenge is to get my head out of this pigsty high enough to see the beauty that surrounds me.
When that happens, I can grab the sword of Chronic Hope and fight my way out of the muck. Every incident of incremental healing must be met with gratitude. I was given many opportunities to prove this theorem true over the last two weeks in Hawaii. The day before we left the mainland, I called the airlines to arrange for a wheelchair. But as it turned out, I did not need the chair even once on the way there and on the way back.
I started a puzzle, expecting that hiking the amazing lava tubes and trails would be beyond my lower back’s abilities. Surprisingly,I participated in every hike except one. There is nothing that I crave more than walking barefoot through the sand and gentle surf right on the edges where it ebbs and flows. I got to walk through heavenly black, green, and white sand for about five miles.
I was sure that my diving fins would put too much pressure on the cyst in my lower back, so I applied tons of sunscreen, knowing that I would be the one to guard our stuff piled on the beach while Dan and Sally snorkeled. Guess what? I swam with at least 20 spinner dolphins, got within about 10 feet of a shark (not on purpose) and was astounded by the beauty of thousands of shiny tropical fish. And our stuff was not stolen.
And probably the best day was a few days ago. Not one single ache or pain. I celebrated the healing even if it was just for one day.
Early this morning I got out of bed and immediately grabbed my sword of chronic hope. If there is one place that a person with Parkinson’s especially needs gratitude and grace it’s at an airport. We drove behind a bus that stopped at least every five minutes and never allowed traffic to go around it. We got to the airport, weighed bags and found we had to redistribute items. Then the security line was long and painfully slow. One by one I asked other travelers if we could please go ahead of them to reach our gate. People were so kind until I reached Goliath. He was 7 feet tall, but compared to my 5’1”, he could have been 9’ tall. He would not let us pass.
We reached our gate one minute after the doors had closed. Ugh – really?
But then our fairy godmother appeared; her name was Sharla. A native Hawaiian and Southwest ticket agent, she made all the necessary arrangements for us to arrive in Denver only an hour later than previously planned. We are in the air now en route to Las Vegas, so we shall see how well that works – I am celebrating that we are almost in the mountain time zone, and I am celebrating that we are on the proper side of the Pacific. Every victory counts when a person has chronic hope.
Our trip was filled with incidents of incremental healings, and my reservoir was refilled with chronic hope. But even more important than all of this is that I have a sneaky feeling that it’s not even about me – it’s about the people who I need to help. It’s not about whether I live a comfortable and easy life. It’s more about those who are watching and waiting to see how I approach and live through each of these challenges. I know that I have had periods of struggle, feeling sorry for myself. I am far from perfect. But if I can help some people as they live the best they can with Parkinson’s, then it will have been worth it all.
Hard to believe that at this age, two weeks short of 70, I am still learning and growing. But I am. I am experiencing a gift called Post Traumatic Growth, and there are some people who have told me that I’ve had an impact on them by the way I try to remain joyful even when it hurts inside and outside my body. Could it be that something good could come from all of this?
I humbly tell you that my book, Chronic Hope, is in the hands of my publisher now! I’m praying that it will be a help to some of my Parkinson’s brothers and sisters.
Now that I am here in the cave, it has been considerably challenging. My old lower back friend has returned with a vengeance, causing pain to radiate all the way down to my ankle. I had hoped that it would hold off for at least another few weeks since we are supposed to go to Hawaii, leaving in two days. I feel as though I’ve worked as hard as possible to stave off the return of pressure on my spinal nerves and the corresponding pain. The good news is that I am becoming very proficient at incorporating a number of tricks and maneuvers into my daily exercise routine that get my sciatica and lower lumbar region back into place.
Of course, I was unable to get a cortisone injection in just a day or two which is pretty discouraging because it could greatly impact my ability to join in on sightseeing and hiking excursions. It usually hurts emotionally more than physically – especially when I let others down. I’ve always been the strong one – never missing out in completing most everything I set my mind to. I’m afraid that I must sound very selfish. You would be justified to think that.
Gradually, Dan and I are finding that we just need to keep our knees bent. I remember years ago going to Mexico with my kids’ youth group; and the youth Pastor saying that God is not so much impressed with your ability as He is with your flexibility. When we could not complete my life long dream to ski the Haute Route from Chamonix, France to Zermatt, Switzerland, I knew that Parkinson’s would at times be very unforgiving. While we are working on completing our bucket list plans, there will be some disappointments, and yet there will also be those plans that go surprisingly well; and for those I am learning the fine art of gratitude. I think it is one of those qualities that is learned at the helm of a ship named chronic hope. As I gratefully learn to celebrate each small victory, it gradually becomes clear that my hope is rewarded with more hope incrementally.
One of my bucket list items was the desire to enter into my last quarter of life gracefully. At first glance it would seem as though Parkinson’s and graceful are two diametrically opposing words, and yet maybe better than finishing up gracefully, I have rewritten my future plans in order to finish up gratefully with as much grace as possible. I have been blessed with an amazing husband, and my family and friends have been more supportive and encouraging than I could have ever hoped for. My heart aches for people with progressive neurological diseases who have no support and very little hope.
Life is hard – probably for everyone – just in different ways. Maybe we all need a case of chronic hope.
My road back is “Chronic Hope.” I have come to recognize that life for me is all about acknowledging incremental healings and declaring that joy and contentment are essential elements in my life’s journey.
In the Bible, the book of Philippians was written by the Apostle Paul. Throughout the book he declares that His life was filled with trials: many beatings of 39 lashes, five times stoned, shipwrecked three times, beaten with rods three times, and rejected by the very people he was trying to help. He had reasons and excuses to worry and complain, and yet he used this opportunity to encourage us to stand firm and rejoice. I declare that I want my life to be characterized by thanksgiving, gentleness, peace, patience, love, joy, kindness, and goodness.
Paul writes, “Summing it all up, friends, I’d say you’ll do best by filling your minds and meditating on things true, noble, reputable, authentic, compelling, gracious—the best, not the worst; the beautiful, not the ugly; things to praise, not things to curse.” (Philippians 4:8 Message) Mindfulness must not be ignored in my busy, busy life. It is necessary for me to take the time to investigate my emotions, declare that they are real, and understand that they contribute to who I am.
I declare that there is far more good happening in my life than bad. Our trip to Hawaii for two weeks was such a gift at the right time. I was able to gain perspective and appreciation for the beauty that surrounds me every day, not just in Hawaii but also in Colorado. Each sunset and sunrise spoke to me of another chance to celebrate Chronic Hope.
I have recognized seven decades of life here on planet earth. When I was just a kid, I didn’t expect that I would still be biking, skiing, diving, running, and hiking the amount and to the level I am now. I thought that 70 and 80 years olds just knitted, played cards, ate applesauce, watched TV, and rode around in wheelchairs. I acknowledge that there will continue to be opportunities to grow and demonstrate joy in the midst of incremental healing. An essential part of life is taking risks, and IF I fall, or should I say that WHEN I fall, I will get back up and continue to become all that God wants me to become.
I am grateful to Robert and our class for helping me to recognize that my emotions are an essential part of who I am. As I am becoming more acquainted with these feelings, I find that they are not an enemy to be ignored, but instead my friends, who help me to know myself better and even like myself more. These are necessary ingredients in producing a joy-filled life and a future of Chronic Hope.
It’s interesting how a diagnosis like Parkinson’s can affect a person. I was in a state of denial. I was pretty sure that with a little more research we would find out that my problem was something far more benign and treatable than Parkinson’s.
I enrolled in every single clinical trial and study I qualified for. Spending all of that time with MDS’ would give me the opportunity to prove to at least one of them that this was just a bad joke.
One of those trials was for the drug, Phenylbutyrate. It had already been FDA certified for about 30 years in the treatment of urea cycle disorders. Researchers believed that it could be repurposed for PD patients. The hard part was that I could not be on any Parkinson’s drugs and withdrawing from Pramipexole was awful. I could not sit for more than about 15 minutes and I felt as though I had drunk 10 cups of coffee all day and all night. The only comfort and relief I got was when I had a massage.
Unfortunately, I never did have a doctor tell me that I didn’t have PD. But I still would recommend these studies to everyone, whether they have Parkinson’s or not. It’s so important that they have the necessary people and information to come up with a cure or at least better therapies for this awful disorder.
I tried some CAM (Complementary Alternative Medicine.) For one of them I had to drive to and from Denver every other day to have the Resonator work its magnetic magic on my feet. It didn’t work. I found a protocol for electroacupuncture, and the doctors I worked with in the Chiro office applied it to me every other day. We’re talking about electrified needles placed in my head! Again, I didn’t see a change.
Probably the most disillusioning experience I had was to make an appointment with a PA who claimed to be a functional neurologist. I told her all of the things I’d been doing to either help me get better or at least to slow down the normal progression. She very matter of factly explained to me, in an extremely condescending manner, that none of my attempts with CAM were going to work because, “don’t you realize that you have a progressive degenerative disease.” It felt like I’d been kicked in the teeth.
I began to notice a pattern here. Day to day I was surrounded by negativity – mostly my own; and my life was all about me.
I needed to change the subject matter soon, before I drove myself crazy. Funny how eventually Parkinson’s would turn my gaze outward. But that was an uncomfortably long transition.
I was working at a chiropractic office when I first noticed a tremor in my foot; this diagnosis was confirmed by one of the docs. I was not totally surprised. My brother, Dave, had been diagnosed with Parkinson’s a few years earlier; but I was still scared and anxious about what the future held.
Would I be able to dance at my grandchildren’s weddings; could I stay as active as I had been with marathon running, alpine skiing, and cross country skiing? I naturally feared the prospect of cognition issues; there were so many unknowns. Who did I trust with such vulnerable information? How fast would this disease progress? What were my resources?
I was overwhelmed and felt as though my wonderfully ordinary life was tumbling down, and I just stood back, as an observer, and helplessly watched from a distance. Where was God in all this? Did He care? Should I keep this from my elderly parents who had many medical challenges themselves? Being somewhat of a control freak, this was a very uncomfortable place for me.
In May of 2013 Dr. T, a general neurologist asked me what I thought I had – I told him – he agreed. His nonchalant attitude was off-putting. He immediately prescribed Sinemet to confirm the PD diagnosis. That seemed odd to me; I had done enough research to know that Parkinson’s meds had a laundry list of side effects. Now, as I look back, I regret not advocating for myself to get a Dat Scan instead. These Parkinson’s drugs are far more dangerous than the MDS’ let on.
A few days later, I called Dr. T’s office, asking for the doctor’s notes, which they agreed to send. They were riddled with errors. Most were minor; but, I was irritated to read that I had had car wrecks because of my PD. There were no accidents, but I had mentioned to him that I was more easily startled and that I needed to drive more defensively and intentionally. When I read that my elderly parents were dead, the veins just about popped out of my head. They were failing but not dead yet. I called his office and asked them to correct all of the errors. I didn’t show much grace. Spring loaded? You bet.
I made an appointment with a Movement Disorders Specialist at University of Colorado Health; Dr. K. was the exact opposite of the first doctor. She told me that I did not have bad enough symptoms to require Sinemet, and all I needed was a dopamine agonist and an MAO B inhibitor. Knowing the potential side effects of dyskinesias with Sinemet, I was glad to get off of it.
Somehow at the end of this visit, even though it wasn’t scheduled, we were able to see Cari, a UCH social worker. What a gift she was to us. She tried to explain that our lives were not over – we were just going to experience a dramatic paradigm shift. With trepidation we asked many questions. Little did we realize that each person’s PD is unique — there are different causes, different treatments, different progression, different meds.
We left UCH feeling much more confident that there was life after PD; but we had much to learn. That was one of the times in my life when I was most appreciative of my husband Dan and the strong support and love he demonstrated during perhaps the hardest time in my life. We had already been through some challenges, but this next hurdle was going to push us nearly to the limits.
I’m glad it’s Dan I’m stuck with – I know that he will be there no matter what. There’s so much comfort in that reassurance, even if at times he is overprotective. He’s good about noticing if my jacket sleeve is inside out before I struggle to put it on. But, he is still learning to ask whether I need help, rather than just assuming.
I would learn later that Cari and Dr. K. and Dan would be just the initial members of my amazingly valuable support group. As each new challenge presented itself, I sought out the assistance of yet another specialist, family member or friend. These people were my life blood.
Patti Burnett