12 Years with Parkinson's Disease: It Ain't For Wimps!


45c8_Bad-Brain1.jpgAs I approach the12th anniversary of my diagnosis with Parkinson’s disease, it dawns on me that I have so much knowledge and useful information to share with those who have not been in the club for as long as I. This is stuff I pretty much had to learn on my own. But not you, gentle reader. You shall benefit from my wealth of experience.

I’m here to help.

Let’s begin by discussing the stuff you do first thing in the morning.

1. To get your day off to a functional start, you will want to take your morning pills. For me, a glass of juice and Metamucil is just the thing for washing the pesky little beggars down. But remember, you just woke up. You are not at your sharpest. That is why it is necessary to look at your pills before you take them.

If you don’t already have one, get yourself one of those pill boxes with seven chambers, one for each day of the week. This not only helps you keep things organized, it helps you when you’ve forgotten whether or not you’ve taken your pills when you were supposed to. For instance, I would forget to take my pills if I didn’t have alarms to remind me. But sometimes, I take a pill, toddle back to the computer, then five minutes later I forget whether or not I’ve taken the pill I was supposed to take. Now, I know there are six carbidopa/levodopa pills in each chamber for each day. If it is past 12:30 pm, then I know there should be three little yellow pills left in the box. If there are four, I know I’ve forgotten to take a pill. See?

I take seven pills first thing in the morning. This why it’s important to look. If I just grab the first seven pills I can get my fat, Parkinsonian fingers around and take them, uh-oh! I have to take the RIGHT pills or there will be trouble. I take a carbidopa/levodopa (for PD), a Zoloft (for depression), a Metropolol (for blood pressure), a Lisinopril (which helps the Metropolol) and Lipitor (because of my minor Oct. 28, 2011 stroke), a baby aspirin (same reason) and a Prilosec (cuz I gots da tummy acid). That leaves five carbidopa/levodopa in the pill box, along with an Ambien and two Klonopin. If I start the morning by grabbing two carbidopa/levodopa, an Ambien and both Klonopin, a Prilosec and the Zoloft, I will need to force myself to throw up – or else I’m facing a very unpleasant morning.

2. If you use a shower seat, and the day will come when you will want one because you don’t want to make the mistake of learning about proprioception as the result of a broken hip…

(OK, we’ll pause a moment for the big fancy word. It means, basically, “The unconscious perception of movement and spatial orientation arising from stimuli within the body itself.” In other words, knowing what position your body is in without having to look. I learned the word when I fell for the first time on November 28, 2008. I was in the shower. My eyes were closed. I went right through the curtain, taking the curtain, the curtain rings and the curtain rod to the floor with me. Luckily, no injuries. Oh, and you’ll probably want one of those flexible shower head attachments, too.)

Anyway… when you get your shower seat and flexible shower head attachment, make sure you have the flexible shower head on the floor and you are seated in the shower with the curtain closed before you divert the water from the bathtub faucet to the shower head. If you pull up that button while you’re standing there with the shower head still in its holder, you will get a blast of cold water on your back and neck that will run down your body onto the bathroom floor. This is not good. If you put the shower head on the tub floor and then turn on the shower head before getting in and closing the curtain, then you will have water everywhere. This results in a treacherous, slippery surface when you get out of the tub and an irritated wife. Also not good. And if you are seated securely on your shower seat and the shower head is on the tub floor, do make sure it is pointed away from you when you turn it on. Otherwise, there’s that bracing and brisk spray of cold water. Pay attention. Make a list. Do things in proper order and everything will work out just fine.

3. Wash everything. Then rinse everything. Set a routine, like washing a car. Start at the top, work your way to the bottom. And by “bottom,” I mean feet. Although you will eventually have to deal with the aforementioned body part. I generally save the sensitive, naughty bits for last cuz they’re a special kind of dirty and I can wash my hands and rinse out my wash rag as the final act of the shower. Do not forget to rinse yourself all over. If you leave any area of your body soapy, you will be very uncomfortable later in the day. Learn from experience. And dry yourself completely. Again, use a routine. Top to bottom. And by bottom, I mean feet. Not the bottom. You can get that on your way down to the feet.

4. Now that you are clean and dry, it’s time to brush our teeth and shave (if you are a man or a former bearded lady in the circus trying to fit in with society). We can not overemphasize the importance of this next bit of advice. So we will type it in boldface.

When in the bathroom, look at the labels before you use things. Toothpaste and Preparation H come in similar tubes, but they have vastly different purposes and do not taste remotely the same.

This is not a mistake most people make more than once. If you find yourself repeating this fundamental error, schedule a visit with your neurologist at the earliest convenience.

5. No matter how clever you think you are, you cannot put toothpaste on an electric toothbrush while the toothbrush is turned on. You will only succeed in getting toothpaste all over the sink, all over the mirror, all over your self. Leave the toothbrush off, apply the toothpaste, then turn it on. I generally wait until the business end of the brush is in my mouth. The bradykinesia (slowness of movement) has increased the amount of time it takes to transit the brush from the counter top to my mouth.

6. If you have dysphagia (difficulty swallowing – a sign of later-stage PD and the leading cause of aspiration pneumonia) and a balance problem (the main reason Parkies end up in nursing homes with broken hips), then you will likely be dead soon and will no longer have to worry about these precautions. But on the off chance you are still caring for and feeding yourself, be careful while gargling. If you tilt your head too far back, you will inhale some of the mouthwash into your windpipe. It will burn like Satan’s fire. If you close your eyes while tilting your head back, you will not only burn your windpipe, you will fall. (See, there’s that big, fancy word again. Proprioception. Write it down.) Keep your head level, force that epiglottis to close by tucking your chin, gargle, then spit.

7. Time will come when you decide to give up the daily blood sacrifice of shaving with a regular razor as you lose your fine motor control in your hands along with one of your lips. You will either grow a beard (and, if you are a lady, it’s back to the circus for you, Whiskers!) or you will get an electric razor. When using an electric razor, use the PRE-shave lotion before shaving and the aftershave lotion after shaving. If you use the aftershave lotion before you shave, all you’ll accomplish is getting the blades all gunked up and you’ll get a crappy shave. Then, when you apply the shave lotion after you shave, it’ll burn like the fires of the ninth circle of Hades. The preshave has astringent properties that dry out the skin and make the whiskers easier to cut. The aftershave soothes the skin, which does not require soothing before you shave. Again, read the labels.

8. When shaving, shave the entire face. If you are distracted by something, like a dog barking or the glint from some shiny object, try to remember where you left off, start there, and finish shaving your face. If you leave a patch of face unshaven, it will look silly and bother you the rest of the day.

9. Adult diapers go under the underpants, not over. I don’t do this one much anymore. But early on, I would slip into a pair of Hanes or Fruit of the Looms only to look at my side and see a neatly-folded Depends adult absorbable undergarment lying there waiting for me. These special undergarments are useless when worn over the standard underwear. Put the Depends on FIRST, and THEN the underwear.

I know, I know. So much to learn, so much to remember. And there’s more. Much more. But I can’t think of anything else at the moment.

Follow the adventures of Parky Bill Schmalfeldt at Livin’ La Vida Parkinson’s.