Living and Learning

Posted on by

Every day brings new opportunities to learn. Sometimes they come as bangs on the head, not literally but emotionally. Sometimes they are more gentle, as an answer to a question you didn’t know you had. These past few weeks have brought so many of both kinds that it has been difficult to keep up.

My husband went into the hospital for brain surgery in May. He has Parkinson’s disorder, a complicated and hard-to-diagnose movement and cognitive disorder that, once contracted, is a life-long companion. There are many approaches to living with Parkinson’s. Each person must research and decide what works for them in the daily battle to make life as normal as possible. It is an individual decision, and it is important that family members and others close can buy into the tactics.

Parkinson’s affects more than just its target human. It affects those around them. The natural reaction of a Parkinson’s sufferer is to withdraw. Withdraw from family and friends and the world at large. Not because it is embarrassing to tremble and shake and move like a sloth but because those outward physical symptoms make others uncomfortable. The uncontrollable shaking of limbs can, at first, look funny. Just stop it. The unnatural movement of the head can cause derision because in the world of normal movement, the head and mouth are controlled, and shaking only happens when someone is acting silly. Speech becomes faster, softer, and nearly unintelligible at times. It is as though the tongue swells, the vocal cords become slack, and the brain cannot moderate the pace of words. Communication is difficult. I, as a “second-degree” Parkinson’s sufferer, had a hard time accepting that my husband’s involuntary muscle contractions were going to be a part of everyday life. Ken is a lifelong athlete. From childhood into his 70’s, he participated in sports. Moving and controlling his body has been a hallmark of his existence. He was an elite athlete in school and signed a pro baseball contract with a bonus right after high school. After he was injured and could no longer play pro ball, he continued in amateur athletics, playing baseball, softball, basketball, tennis, golf, etc. He was always on the move, a big strong guy.

My husband lost the use of his right hand a few years ago. He is predominantly right-handed in everything. He couldn’t feed himself using his right hand. He couldn’t do the simplest of tasks, even blow his nose with a tissue, using his right hand. He learned to be more adept with his left hand and eventually that was affected. How is it that a simple task you never think about becomes impossible? Not just difficult, but impossible. His right hand might as well have been cut off. It was useless. More than that it was annoying, moving uncontrolled. The disorder enlarged its landscape to encompass his head, his jaw, his left arm, both legs and feet. By midafternoon every day he was exhausted by the constant uncontrollable movement of his body.

I was amazed at the grace with which he accepted his disorder. He did not display anger or ask “why me?” He worked hard every day to find ways to use his body with its limitations. He continued to do as much as it allowed him to do even though it took much much longer. He assembled two occasional tables I ordered from Amazon that came in pieces. It was a simple thing he would have done in fifteen or twenty minutes but took hours. He had to stop every few minutes to allow his hands to calm down. The concentration on movement exerted to place a screw and turn the screwdriver caused stress that would send him into a tsunami of unintended movement. He was resolute not to let Parkinson’s win. He did it and we have two very nice tables in our family room. An Olympic accomplishment with Parkinson’s. Brave, determined, and persistent are his pronouns.

We have always walked. Well, in younger days we jogged. Just a few years ago we’d go seven miles in a circuit of our neighborhoods. Usually, we walked three miles at least three or four times a week. Ken’s walk became slower and more tortuous. It was hard for him to move his feet. He said they stuck to the ground. His walk became a shuffle and his back became stooped. He still walked our street, about a mile, each day but it became slower and slower. He had to stop several times and his balance was iffy. Of course, falling is a horrible secondary problem that can happen. If he fell, he couldn’t get himself up and I certainly couldn’t lift or move him.

After exhaustive research over a couple of years, Ken decided to have DBS surgery, Deep Brain Stimulation. Two electrodes were placed in either side of his brain connected to a lead that goes into a device implanted subcutaneously in his upper chest. It is sort of like a pacemaker for the heart, but it controls the brain. He had the two-part operation last month. After some weeks of healing, his stimulator was activated a few days ago. It is a success! His tremors have been substantially reduced. His movement is freer. His walking is improved. He is fully able to do daily tasks to take care of himself. He is even back to cleaning out the cat boxes. He is not all that he expects to be and there will be more appointments over the next few months with the neurologist to tweak the settings as his body adapts to the implants. It is another step along the Parkinson’s journey. It is not a cure. There is NO cure for the disorder, but it will allow him to have an extended period of time, several years, with minimal or no outward symptoms.

Along the way, through nearly three weeks of inpatient care, we both learned patience. Not just the word but the actual fact of patience. In the hospital, the very busy staff tried to keep up with requests. Push the button and someone will be in to help you…go to the bathroom, sit up, get back to the chair, get back into bed, get a drink of water, take a pill, etc. The time between the button push and the actual help could extend to what seemed forever. It is called “hospital time”. We learned to honor hospital time. We knew the nurses and techs had more than one patient to attend. My instincts are to “just do it”, whatever was needed, but when I was there, I could get him food and drink and that was about it. I was not allowed to transfer him or help him get up, or take a short walk, because of liability issues. An alarm was put on his bed so if he moved to get up it screeched – jailbreak, jailbreak. The staff took it that he had fallen out of bed and dropped everything to get to him. Not a good look when all he wanted was to get tissue from the table that was too far to reach. Patience.

We are deeply grateful to the talented surgeon, Dr. Julie Pilitsis, and her stalwart team of neurologists (too many to name here) who came up with solutions to the challenges of Ken’s Parkinson brain. We feel blessed that the DBS option was available and worked for him. Thanks to some very dedicated therapists, we also learned the difference between the Parkinson brain and the normal brain. When Ken thought he was talking normally, Parkinson was deceiving him. When he thought he was taking normal steps, Parkinson was deceiving him. He had to realize that his perception was being modified by Parkinson. It was an ah-ha moment for me too. He wasn’t being purposely obstinate when I said to speak up. He thought he was speaking clearly. He is signed up for outpatient therapies, but we are on “insurance time” waiting for a slot to open for him in a month or so.  Until then we have improvised a regimen at home. He wants to recover the strength he lost over the time he was inactive. He is doing physical, speech, and cognitive therapy every day to regain vigor and relearn things we used to take for granted.

Our eight-year journey with Parkinson’s continues.

17 thoughts on “Living and Learning”

  1. Oh, Diana, I wept when I read this.  You and Ken certainly are brave.  But what choice do you have.  You can be sorry for yourselves or get up and try to do things you want to do.    I am so proud of you for sharing Ken’s story.  My good friend in CA lost her husband 5 years ago, but there were many years of what you are going through.   She was a trooper too.   Prayers for you both.   Wish I was closer to help in some way. Emilie

    Like

    Reply ↓

    • Thank you, Emilie for your comments. And a BIG thanks for the card you made for Ken. A smile bloomed on his face when he saw it. How did you know? He has been craving and asking for watermelon every day. It felt like you had been listening to him when he saw that picture. We both had a good laugh. He gets his watermelon fix at least once a day. Thank you for your friendship. It means the world.

      Like

      Reply ↓

  2. thanks for sharing this journey.. I have a friend who has been dealing with Parkinson’s and I am embarrassed to say I knew none of this.. prayers for you and Ken.

    Like

    Reply ↓

    • Thank you Linda for reading and commenting. Parkinson’s is a hidden disease because those affected don’t want to be humiliated in public so they withdraw. Thank God for Michael J. Fox who has put himself on the forefront of the research being done to help those afflicted with this degrading and debilitating disorder. We are lucky to have found a medical group here at Banner with the experience to provide a temporary assist through surgery. It is not a cure but it will give Ken some more years of “normal” life. Maybe in that time a cure will be discovered.

      Like

      Reply ↓

  3. Dear Diana,

    Thank you for sharing your true life journey with Parkinson’s. I walked in your shoes for 5+ years. My sweet husband was diagnosed on Valentine’s Day 2018. I had done my research and told him a year earlier of my belief that he had Parkinson’s Disease (PD) when the neurologist would only say that it was Benign Essential Tremors. Fortunately, we connected with a neurologist, in whom we had great confidence, at Banner, Dr. Kathryn Bradley.

    The journey you have so accurately described is heartbreaking and hard work for both the PD patient and the care partner. The stigma attached to those who appear different from the norm is very real! Once, when my husband was a speaker at apublic meeting, a person who had been given the floor, told him to stop shaking his head at her. Sadly, it forced him to announce publicly to all assembled that he wasn’t shaking his head “no, but was afflicted with Parkinson’s Disease. It was a terrible embarrassment for him, and I was very angry with the woman who called him out. After the meeting, I insisted that she apologize to him. As care partners, we are the back-up, chief supporters and “protection” for our partner!

    I hope that you have found a Parkinson’s Support Group near you to attend. We both found it to be very beneficial for the PD person to be able to share with others what is being experienced and provides a great educational opportunity as others share their information. If you can find a care partners support group, please do so! If you can find a Care Partners Group, I would highly encourage that as well! While I could not find such a group for me, I did find that writing a daily journal, that I called “The Journey”, was very helpful for me. Here I am one year and a few days beyond my husband’s passing, and reread The Journey has been enlightening even now for me and brings me comfort.

    Again, thank you for writing such a deeply personal, truthful and clear depiction of what those who suffer with PD deal with! Thank you for sharing your story. Please continue to do so are you are bringing enlightenment about this nasty disease to others. Thank you for so clearly expressing the difficulties that you both encounter on a daily basis.

    Blessings to you both on this journey.

    Like

    Reply ↓

    • Thank you, Georgia, so much for sharing your story too. PD is certainly an ugly diagnosis and life partner. I’m very sorry your husband passed away. Your grief is still very fresh. I’m sorry your husband had to endure a public humiliation by a thoughtless person. Writing is a wonderful solace in troubled times. I too am happy to have a written journal of Ken’s battle with PD. There have been some very dark days. At this point I can say it feels like progress although I know it is only a pause in the ongoing deterioration that will come. He took a very brave step to have surgery. I supported wholeheartedly his decision but, in quiet moments to myself, questioned the scary parts of his having brain surgery. What can happen? Too many unknowns even with the assurance of a seasoned medical team. So far, he has a very positive outcome and he feels much better and in control of his body. We cannot know how much better he will get or how long the effects will last but right now he is very happy and I am very grateful. For a few years before his PD diagnosis, he was also told he had Essential Tremor. I guess it is just hard to tell the difference until the disease progresses. We are surrounded by a wonderful community of friends, neighbors and family and I feel their support daily. I did attend a group meeting at the POWER gym for Parkinson caregivers. Their focus was on the dementia aspects of Parkinson’s because that was the direction their spouses’ disease had taken. We have not experienced that. Ken didn’t feel he needed the gym exercises, so we never went back. He does a variety of exercises here at home. I know I can return to the POWER gym group whenever I need more support. I also have a close friend whose husband had Parkinson’s and she is a great resource and comfort. God bless and thank you for reading and commenting.

      Like

      Reply ↓

  4. Wow! So with the “activation” he’s already showing signs of improvement!!! I’m thrilled to hear this!!! Such exciting news!

    Hugs…..

    Joanne

    Like

    Reply ↓

  5. God bless you both with the love, perseverance, medical help you deserve. Please tell Ken he’s the best baseball player I ever had the privilege of playing with. And thank him for all the times he drove us to our American Legion games.
    Thank you for what you wrote, Diana. It’s beautiful, moving, and very informative. I hope many people living with Parkinson’s and their families read what you’ve written. I also hope pastors read it as well. There will come a time when they will have to support those stricken with disease and their families.

    Like

    Reply ↓

  6. One of the blessings of being a writer is the ability to share life’s stories

    with the world. Your story will touch many. My heart goes out to you and Ken.

    Like

    Reply ↓

  8. Diana, for two hours, most Saturdays, we walk and talk. We brush by the nonsense news, examine medical marvels, highlight our week, and retell histories uncovering ourselves. Still, I never fully grasped the complex life you live with Ken and his Parkinson’s. Thank you for putting it in heartfelt black and white. I can truly appreciate your tremendous fortitude and grace. Bless you both.

    Like

    Reply ↓

Leave a reply to Diana Cancel reply