When I was first diagnosed with back in 2000, I used to lie awake some nights wondering what it would be like to experience , freezing-of-gait, stuff like that. Face it, when you’re 45 years old it’s really hard to imagine what it’s going to be like when you can’t walk at your former rate of speed. What’s it going to be like when you can’t control your motions. What’s it going to be like when you freeze up when you walk.
Thankfully, I’ve been spared a great deal of experience with dyskinesia. I had some stimulation-related dyskinesia in 2009, but a visit with my neurologist and an adjustment to the settings of my deep brain stimulation devices fixed that.
Here’s some video of me having dyskinesia.
Now, no more dyskinesia. I get some dystonia… cramps in the neck, back, calves feet, but nothing like you see in the video.
Freezing of gait. I used to wonder what that would feel like. I think the first mention in my journals of FOG was November 28, 2008. I had just had my first official fall that morning fell through the shower curtain, taking down the curtain, the curtain rod, and bashing my head against the far side of the shower wall. Later that day…
In the more than two years that I’ve been experiencing FOG, this is the best way I can think of to describe it. Stand up. Raise one foot off the ground. Now… without putting that foot down… raise the other one.
You can’t do it. But it’s really more involved than that, and it truly defies accurate description.
I asked my wife to take me to the today. I wanted some new jammie bottoms and a long-sleeved t-shirt. Also, we had to get some grocery shopping done. At the mall, I used my cane. I was trying to take “big boy steps” not my usual short, shuffling steps, but really stretching out my legs with a longer stride. But at the predictable points of my journey, I would freeze. Not just my feet. But my whole body freezes at first. If my left arm is extended… it stays there until I can get control of it again. Once my upper body is loose (usually a matter of seconds), then I can concentrate on getting my feet loose. Earlier in the course of this thing, it would be one foot or the other that would freeze. Now they both stick to the ground. We have various tricks we use to get me loose. Gail will take my hand, and sometimes that cuts me loose. Sometimes it doesn’t. Sometimes Gail has to put one of her feet in front of my feet and give me “something” to step over. Sometimes it works. Sometimes it doesn’t. Sometimes I just have to decide which foot I want to move first, lift it straight off the ground, step forward with it, and it generally causes the other foot to follow. Usually. Not always.
When we have room to walk side-by-side, Gail holds on to my hand. When we don’t have that kind of space, she walks behind me. I honestly think she would tear every muscle strap in her back if she tried to catch me if I fall, and I don’t think that would stop her from trying.
What makes me freeze? Going from a steady plane to an incline. A painted stripe on the street. A ramp in front of the store’s door. A change in the pattern on the floor. Feeling myself wobbling to the side (usually to the right) and catching myself. Here at the house, trying to get through the narrow opening in the doggie gate ALWAYS makes me freeze. A dog walking alongside me when I’m not expecting it makes me freeze. In the store, someone passing me on the side in close quarters makes me freeze. Seeing a little kid running towards or alongside me and I freeze up like an iceberg. Going from a room into a hallway makes me freeze. Going from a narrow hall into a room makes me freeze. A loud, unexpected noise makes me freeze. Walking in the mall, when I come to one of those display things that sticks out into the walkway, I freeze. I try to stay close to the wall so folks will have to pass me on the left. Gail protects my left side. And this way, if I freeze, hopefully no one walks up my ass because of the sudden stop. I can’t feel it coming, I generally do know the situations where I tend to freeze, but I don’t ALWAYS freeze in those situations.
Then there’s the slowness of my stride. I think I may have mentioned this earlier, but when I try to extend my stride from the little steps to the “big boy steps”, I will generally freeze at first. But even when I am able to take the “big boy steps”, I remain slow. My medication and have really negated the stiffness… the rigidity that goes with Parkinson’s disease. I’m loose, but I’m slow.
(Well, that’s not always true. I’ve noticed lately when I’m settling down to sleep at night I have to consciously relax my neck and shoulders to allow my head to sink into the pillow. It’s like, for some reason, I’m tensed up against relaxing.)
Today Gail told me that walking slow to stay with me actually causes her muscles to hurt. When she’s out by herself and can go at her own rate of speed, she doesn’t get nearly as tired as she does while walking with me. She can also get to the car quicker when it’s cold, rainy or snowy when she’s by herself.
Then, there’s the mental stuff.
I don’t remember if it was yesterday morning or the morning before, but I woke myself by almost getting out of bed. I was semi-awake and thought it was time to get up, so I grabbed my side bar and swung my legs over the side of my bed and wondered why Raven was still in the room. And why was Gail still asleep. It was only 5:30. Gail wouldn’t get up for another half hour, at least. So, I got back into bed and went to sleep.
Today, at the grocery store, as I was walking back out to the car I saw one of those displays you see in cardboard display boxes just inside the door. I wondered why they were selling frozen turkeys out in the front of the store like that wouldn’t they thaw and spoil? As I got closer, I saw that they weren’t turkeys. They were bags of oranges.
THIS IS WHY I WRITE THIS BLOG! THIS IS WHY I SHARE THESE EXPERIENCES!!!
You see blogs by other folks, especially those who are newly diagnosed, that are full of joyful optimism about how “they have PD but PD doesn’t have them.” And that’s right! And that’s good! But you do NOT see many blogs written by people who have had PD for more than a decade. You rarely see blogs written by folks who are moving into Stage IV in the PD Hoehn and Yahr scale. You rarely see patient blogs written by someone who is really feeling the effects of the disease who feels medical science has done just about all it can for him.
I will not be maudlin. I will not be downhearted. I will not be defeated. I will not be like the idiot Gunther von Hagens of “Body Works” fame who has had this thing for two years and has announced, therefore, he figures he has seven years left to live.
I will write about my experiences so that you, if you have PD, can have an idea of how to handle things when they happen to you. PD affects us all differently me, for instance… I am largely without tremor. Rarely had it except for one day recently when I had a really bad shake going on in both hands… it was gone the next day.
But I will not downplay the disease’s effect on me. I will not write rosy descriptions about how “it’s all in God’s loving hands and he will lead me as he will.” I will not post pretty little poems and pictures of pretty little flowers. I will be honest with you. In some cases, brutally honest!
I will tell you about how some mornings taking a crap is like trying to push wet driftwood through your ass and other days you’re sitting at your desk trying to get some work done and suddenly poopie! Diaper changing time!
I will tell you about how some days each step comes with great difficulty.
I will tell you about the times when I fall, the times when I drool in public, the times when I befoul myself in public, the times I cough up all over the table because part of what I was swallowing went into my windpipe instead of my food tube, the times when I try to speak on the phone and sound like Porky Pig, the times when I’m speaking directly to a person and can… not… make… my… mouth… say… the… word… I… want… to… say.
I want you to KNOW Mr. Parkinson’s! I want you to CARE about Mr. Parkinson’s! I want you to reach into your pockets, if you are able, and DONATE to the Parkinson’s disease charity of your choice. I want you… I NEED you to help science find a cure for this damn thing.
But I will not be defeated. I will not be broken. As long as I am able, I will write about my experience. The bad as well as the good.
If you want flowers, go to a florist.
If you want the truth about living with Parkinson’s disease, welcome to my blog.