Lord, I was born a ramblin’ woman…

May 16, 2009 | My Jottings

I’m such a nester, such a homebody, that anyone who knows me knows that today’s title can’t possibly mean I’m a ramblin’ woman in the normal sense. No, it means in the wordy sense. I was born to ramble, and so ramble in print I will.

Yesterday Michael and I drove to the Minneapolis area for an all-day series of medical appointments at The Struthers Parkinson’s Center. We left at 6:45 a.m. in order to make his first appointment, and returned home in the torrential rain last night after dinner.

At the Struthers Center Michael saw his neurologist, Dr. Martha Nance, who prescribed a significant increase in the medication he’s taking. She’s a brilliant, slightly quirky woman we really like and trust, and she said that in spite of the increase in meds he began two months ago, he still looks like “an undermedicated Parkinson’s patient.” I knew what she was talking about; once you know what PD looks like, you can often pick other people out in a crowd and tell they have it by the way they tentatively move, by the lack of expression on their face, the sound of their voice. So he will begin taking quite a bit more of the carbidopa/levadopa this week, which replaces the lost dopamine in his brain (which facilitates basic body movement). The goal is to take enough drugs to restore smooth movement and hence, quality of life, but not to take so much medication that the main side effect, dyskinesia, sets in.

Dyskinesia is the term for the wild, undulating movements that most of us have seen in Michael J. Fox. Parkinson’s disease actually makes one stiff and frozen; too much medication makes one dyskinetic. It’s actually pretty difficult to take just the right amount of medication because there are so many variables. Sometimes a PD patient (they call each other Parkies) will have wonderful results with the same pill, and the next day it’s not enough because they ate more protein, or because the atmospheric pressure is different, or because of any kind of stress. So most PD patients know they can fiddle with their meds and most doctors give them that permission, within guidelines.

We learned yesterday from Dr. Nance that Michael’s PD is more complex than just the kind that causes a movement disorder. His Parkinson’s is beginning to affect his cognition and his ability to retain things that are said to him. Up until now his medication has helped a little. We’re hoping that the increase will help even more.

After we saw Dr. Nance we saw a Speech Pathologist who specializes in Parkinson’s-related speech difficulties. Michael spoke into a microphone that showed us how many decibels his voice level reaches, and it was surprising to see that to reach the decibel level of a normal speaking voice, he had to exert the energy a healthy person would need to project their voice across a large, crowded room. So for him to make himself heard, he has to basically make himself yell, which gets pretty tiring for him. He was a bit taken aback to see on the computer monitor that his normal speaking voice (affected by PD) is at the level of a whisper. What makes it even harder is that PD affects a person’s perception of this – when they raise their voice to what most listeners would be able to understand, the patient himself wrongly perceives that he is yelling loudly. So we have a lot of speech practice and homework to do, along with some breathing strategies Michael will have to learn, so he can make himself understood a little better.

Then we had a lunch break, and we drove to a place nearby called Panchero’s Mexican Grill, where they made their own giant flour tortillas right before our eyes with this huge press that flattened the balls of dough and cooked each one within seconds. We had pulled pork burritos with tangy pico de gallo and black beans, and then we went outside to enjoy the beautiful day. It was warm and breezy and many people were out walking, reading on benches, experiencing the pleasant weather after such a long winter.

Once back at Struthers, Michael’s next hour-long appointment was with a Physical Therapist, who had him walk down the aisle and back several times, and she was able to see that his right side is more affected than his left. He doesn’t swing his right arm much when he walks, and occasionally drags his right foot in stride, although it’s not obvious to an untrained eye. She spent a lot of time teaching him about posture (which deteriorates in PD), turning around in small places without falling, the importance of stretching and spine extension. We learned about “festinating,” which is a strange phenomenon that happens in PD patients, and Michael is beginning to experience this. Sometimes when he starts to walk, or particularly when he is walking through a doorway, his brain misfires and inaccurately senses the narrowed space he’s about to pass through, and he involuntarily steps or shuffles jerkily really fast for a few seconds. He can’t control it, but there are things we learned about that can head off a festination before it starts.

By this time in the day, we were getting tired. There’s so much information given, so many new things that need to be learned about living with Parkinson’s, we both felt a little overloaded. And traveling is always a bit tiring too, and we knew we had the long drive home after his last appointment.

Michael’s last appointment for the day was with a kind and compassionate man named Rick, who’s an Occupational Therapist who specializes in PD issues. This was perhaps the most helpful appointment of the day. He showed Michael how to turn over in bed easier by using a large piece of satin on the mattress, tucked on the sides. He brought Michael a tray of food and had him try out several adapted eating utensils, and what a difference those made. He’ll be able to cut and spear his food much easier now. Rick tested Michael’s strength, his spatial perceptions, his finger mobility, and was honest and encouraging even though the findings were sobering. We left that appointment with a pile of paperwork and a catalog from which we’ll order several items that we’re hopeful will be really helpful in everyday life.

On the way back from The Struthers Center we listened to The Hobbit on CD, read by a man whose name escapes me now but whose deep and rich British accent makes for delightful listening. It poured most of the way home and even with the windshield wipers on high, visibility was minimal. We were so glad to get home safely after such a long and eventful day. On the last stretch of road, about a mile from our house, we thanked God for giving us a safe journey.

Our daughter Carolyn and her husband Jeremy held down the fort while we were gone, serving meals to and visiting with our residents, making sure Edith and Mildred the Schnauzers were put out sixty-seven times, and just generally giving us the peace of mind needed to spend the whole day away at Michael’s appointments.

When we pulled into the driveway in the pouring rain, the lamps in the den were glowing from the window, the house had been picked up and vacuumed, the kitchen was spotless with the dishwasher running, and even the grass had been mowed. I was so thankful for the things Carolyn and Jeremy did for us while we were gone.

Today we have grocery shopping to do, prescriptions to fill, paperwork to complete, meals to make. We’ll also order some things from a Parkinson’s catalog, and now bent forks, curved-handle knives and plate guards will be part of our kitchen. We’ll buy some satin yardage for our bed and perhaps a stretching DVD that we’ll eventually do together several times a week. I know that as we drive along and listen to The Hobbit in the car, Michael will quietly reach for my hand as he usually does. Our individual thoughts may not come out as conversation, but they’ll probably be similar thoughts: we did not sign up for this. Who knew that Parkinson’s Disease would be a part of such a vigorous, active, strong man’s life? Who knew that my husband would be forced to become slow and inactive, prisoner to his own stiffening muscles?

But I’ll tell you what we did sign up for, back on June 28, 1981. We signed up for each other. We signed up for years of faithfulness and service to each other. We signed up for forgiveness and patience. We signed up for “better or for worse, for richer or for poorer, in sickness and in health.” We promised each other, our family and friends, and God, that we would take whatever came, with His help. If I am to be perfectly honest I must say that Michael has honored these vows much more graciously than I have. But God’s kindness and patience with me makes me want to do better and better. I want to learn to love lavishly, as He does. I believe He’s teaching me, and He’s astoundingly merciful with such a willful and stubborn child.

In spite of all these trials, I know that God is good. I’m so glad that His ways are higher than my ways. I’m so relieved I don’t have to understand what He does to trust what He does.

In His grip,

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Comments

  1. Rob Franck says:

    Give Mike my best. I’ve been too busy to come over and watch the Twins lately. (Three walk-off losses in a row! Ouch!) Thanks for the updates, and we will pray the medicines do their job.

  2. Dorothy Sooter says:

    Dear Julie & Michael,

    Thank you for sharing, I have wanted to ask but also feel that what you are both going through is so personal. I am so grateful that you are close enough to the Parkinson’s Center.
    I know the driving must have been hard, Thank God for His faithfulness to all of His children. My prayer for Michael has always been the same, that the medication would work well with no side effects. Julie, I wish I lived closer to you so I could be of more help. Please give Michael a big hug from me, I love you both, Dorothy

  3. gail says:

    Hi Julie-
    As Mark says, you are an excellent writer….however, the topic was so sad…I am so sorry that Micheal’s PD has progressed so much. It sounds like you received some great advice, though….. Love you sooooo much! Gail

  4. Ginny the computer challenged friend says:

    I guess that I would have to say that even though this disease totally stinks, I am refreshed and encouraged to hear of a man and woman devoted to each other and cleaving together through whatever this temporary life pitches at them… truly honoring THE Covenant they made with God. I have witnessed too much of the opposite lately and am blessed to see you boldly proclaim what marriage is really about… No wonder I call you JEWEL…

    XOXOX to you both

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