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This week I took my dad to his neurologist for a follow up appointment at WVU Neurology Center. Dad cannot hold his head up when he walks, his chin almost to his chest. His mouth and tongue are always moving – against his will, just a constant nervous back-and-forth movement which he cannot control. It all happened gradually within a few months and was a puzzle which took months to diagnose. It’s called Tardive Dyskinesia, a result of a drug prescribed to him during a hospital stay due to a life altering automobile accident last year. This was our third visit to Morgantown in attempt to gain answers. We had been given medications to try – to no avail – and yet told up front that there is no cure for this condition. It may or may not go away on its own. We returned for the checkup to report that all meds had been stopped due to undesireable side effects, in hopes of another answer.
It had been a couple of weeks since I’d weaned dad off of all the medications. It was like watching someone come back to life – but until this day I’d no idea how much.
It was an unusually lovely November day with temperatures in the high 60’s. Since I had less than half a tank of gas, I stopped to refill. Dad whipped out his credit card, jumped out of the car, and insisted on pumping the gas. You have to understand that this hasn’t happened on any other trip. Not that I expected or wanted him to pay for anything, but in years prior he would never have even considered letting me pay for something like this. He just has not had the presence of mind nor the energy to think of it. “This is new.” I mused to myself.
We caught up on the events of the past few days – the ongoing construction of the new apartment, our new carpet installation (transpiring that very day), Jim’s trip to Washington, D.C. for the week, family, church. About an hour into the 3 hour drive, there was a pause in the conversation, and I anticipated we were done. My dad has never been long on words, but for the past year since suffering this unusual ailment, he’s been especially quiet. A lot has been due to the fact that the meds made him sleepy. It has also taken him a while to get used to talking with a constantly moving mouth, which makes his speech slurred at times. Whenever I talk with he and mom, she usually chatters happily about this and that, and he’s content to let her steer the conversation – unless he has something important to say.
Much to my surprise, dad continued to ask questions now and then, encouraging more conversation. He did not doze off (the first time I took him he was asleep within the hour, his whole body leaned foward in his chair). He chuckled at my stories of my kids and their recent happenings. He asked about our carpet, friends, relatives. When we arrived in town early, I decided to take him to Subway – he’d never been. “I have a twenty dollar bill, that should at least pay for most of mine and your’s.” “Oh, I can pay for my own, you don’t need to pay for me. In fact, I’ll pay for lunch.” He wouldn’t hear of it. He seemed to enjoy his Spicy Italian wheat sub.
After we arrived and waited in the doctor’s office, dad spoke, “Well I can pay for your gas, and I can pay for your lunch, but I can never pay you back for the time you’ve taken to bring me here.” “Well, consider it pay back for all the times you had to run around picking me up from ball games and school and such.” “Yes, I remember picking you up from school once and on the way home you broke your glasses and we had to turn right around and head to the eye doctor.” Touche.
The specialist’s intern took dad’s information. I explained we had ceased all medications, due to little improvement and less than desireable side effects. She questioned us at length, checked dad’s reflexes, and retrieved the doctor after briefing him. He greeted dad warmly, reviewed the medication treatment and ceasing of it, and said sympathetically “Well unfortunately, there’s nothing we can do. I know it’s aggravating to have the occasional tongue and check biting, but there is simply no cure for this.”
I tried not to let my chin quiver. I knew he would say that. But mom and dad have been so in hopes that something else could be done. “It may go away, it may not.” Observed dad. “Right. However, you are lucky, compared to most of these cases. I’ve seen a lot worse.” He then proceeded to dictate to the intern that he would see him back in 6 months. “Is that necessary?” I questioned. “No. Not at all. I’ll see him back as needed.” “Thank you.” I said, and my respect for him grew. “The door is always open for you. You are always welcome if you need to see me.” “We’ll keep you in our back pocket.” I replied. He is a good, knowledgeable doctor. He has been at the university for over 30 years, I know he knows his stuff, and I knew if he had an answer we would have it. Some things you just don’t have answers for, and this is one of those things.
We had barely started back down the hall from the office when dad remarked, “Good call, Gray.” He was happy not to have to do this again.
But we weren’t done yet, for we had a very sick friend from our church in ICU next door that dad was determined to see. He took charge, walked up to information, and asked for the room number. We were directed to the proper floor, where again, he asserted himself at the desk. “What relation are you?” We were asked. “I’m her former pastor.” No questions asked, we were ushered back. I’d forgotten about that. When our friend, Mary Sue, was just a young girl, my dad had indeed pastored her church. They went way back.
Dad walked right into the room and began talking to Mary Sue, who had on a Bipap mask and couldn’t converse, but could nod her head and hold his hand. He continued to amaze me as I watched the former pastor emerge from somewhere within, the kind, caring, witty man I’d always known. He thought of things to say during the one-sided conversation when all I could do was watch. He told the nurses who popped in how he knew Mary Sue when she wasn’t even as tall as the bed rail. He talked and joked with Mary Sue as if she could talk and joke back. He even determined when it was time for us to go. I marveled.
We stopped by Sheetz on our way out of town to get a drink. I got a water, and helped dad get his beloved chocolate milkshake. Again, he insisted on paying. I drove over to the gas pump, since I had half a tank left , and hopped out. “What are you doing?” He asked quickly, scrambling for his credit card. “Gassing up again, but I’ll pay this time, you don’t have to pay for everything!” He stayed put, but I think only because he was halfway into readying the straw and spoon for his treat.
I expected him to doze off on our way home. Instead, he finished his milkshake and started talking about Jim. “He must be a highly intelligent individual to remember everything for the type of job he has. If that were me, I’d be carrying a bunch of manilla folders everywhere I went and scrambling to keep everything straight.” I had to laugh at this. My dad is a very detailed person and his thought patterns are much different from Jim’s, who thinks nothing of driving to D.C. and back in a day for meetings, all the while fielding phone calls as well as managing jobs.
We talked the entire way home and never ran out of subjects. I’ve not heard him laugh that much in a year and a half. It’s hard for dad to smile and facial expressions are limited because of the Dyskinesia, but he can still belly laugh, and that was music to my ears. We passed the gas station on the way into our road. “You gonna stop and let me fill up your tank before we go home?” He asked. “No, I just wanna go home.” I said. He chuckled and joked, “Well, ya gotta take me home first!” He lives right beside me. “Well, thanks again for taking time out of your day to do this.” He then thanked me twice more before getting out of the car.
I can’t tell you what that day meant for me. I know it was a culmination of getting off unnecessary meds, but also from sage advice from dad’s vascular surgeon. At a follow up for a blood clot in the spring, dad had asked him if he could run his tiller and have his garden again. He’d totally missed gardening the previous summer due to illness. Doc saw me roll my eyes, laughed and looked me straight in the eye, “Don’t hold him back. He needs to be able to do what he enjoys, don’t hold him back.” Even though dad has been rather forgetful, he never forgot that (of course). Dad did work his garden all summer, albeit in a much altered way. But it gave him purpose and strength, and even in the past month, he has been able to mow his grass.
I’m thankful to that wise surgeon who saw beyond his field of expertise and cared beyond what was required. I’m thankful for being able to use common sense with dad’s care. But above all, I’m thankful to God for the miracle that He has performed in bringing my dad’s personality and strength back. He will probably never look like he used to and may never be completely healed, but I am thankful for here and now. You never fully appreciate something until it’s taken from you, do you?