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.