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Parkinson's

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Near Disaster Adverted

After this weekend, I may be off-line for the better part of a week or maybe more. On Tuesday, I am having a pacemaker implanted. My cardiologist finally said, “it is time to fish or cut bait”. The invention of an MRI compatible pacemaker and a near disaster this past Sunday made the decision to go ahead with the pacemaker easy. For the first time in months, I had what could be clearly identified as a seizure. Although the seizure itself was very mild, the results frightened my wife. We were ready to go to church, when I remembered that I had left my  ideas notebook that I try to carry at all times (because I never know when I will get an idea).  upstairs on our head board. So I went upstairs to get it. Our bed is located in a small alcove in our bedroom. So I walked between the bed and the outside wall up to the head board. I picked my notebook and pens and put them in my shirt pocket. When, I turn around and start to walk back to the foot of the bed, I found that I couldn’t walk. All I could do was shuffle my feet which is not atypical of Parkinson’s patients. As I slowly approached the foot of the bed, I stopped shuffling because my right foot wouldn’t move at all. In frustration in a moment of an imposed application of will, I forced my right foot to move. With that exertion, I lost my balance and started to fall backwards. In that fall I sat in our second story bedroom widow breaking the glass. I grabbed the window frame so that I didn’t go all the way through the window. My wife, Elaine,  heard the glass break and yelled, “What did you do?” I yelled back, ”I broke a window.” By that time Elaine was running up the stairs yelling, “How did you do that?” All I could think of was to say, “I sat in the window.” To which Elaine asked, “You did what?” I couldn’t think of anything quick enough to respond to her, so she kept yelling, “Are you okay?” I didn’t say anything, but waited until she got to our bedroom. She looked at me sitting in the window with my hands still gripping the window frame and she yelled, “What happened.” I tried to calmly explain what had happened. Now that I reflect on this scene, according to the TV commercial, this would have been a perfect time for a Twix to give me time to think of a good answer that I didn’t have on the spur of the moment.

Elaine went about cleaning up the mess on the window sill and floor. Apparently our mini-blinds and my Sunday clothes kept me from getting cut by the chards of glass that were everywhere. Since this occurred on a Sunday morning and it has rained or snowed every day since, we now have a boarded up window in our bedroom until we can have someone come and put in a new window pane.  In our old house with its old windows, the glazing is on the exterior side of frame, so the glass pane must be installed from the exterior. The boarded up window is a constant  reminder to  us of God’s care.

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Living with Epilepsy, Aphasia and Parkinson’s is like Happy Hour at a Nascar race

Sometimes I feel that living with aphasia, epilepsy and Parkinson’s is like driving a NASCAR race car. No, I’m not talking about living in the fast lane, going 200 miles per hour. I am thinking more  about what goes on during “Happy Hour.” For those not familiar with NASCAR terminology, at most races between qualifying, where the starting positions for the race are fixed, and the race itself, there is one final time of practice that is called “Happy Hour.”  For those of us with aphasia, epilepsy and Parkinson’s, sometimes I think it would be nice to have  a Happy Hour when we could run through a practice and find out where we operate best before going out in the race of life.

 Why is this practice time called “Happy Hour?” First of all, it usually lasts one hour. That part makes sense. Why happy? For many of the drivers and crews that work on the cars it is not necessarily a “happy” time. However, since it is the last time that teams can see how their cars and drivers are going to react to racing conditions on the given track, it is a frenzied time. Drivers try different lines (in racing terminology, normally called “grooves”) to see where on the track their cars can get around the track the fastest. Since many tracks are not flat, but highly banked, contrary to general intuition the fastest way around a track is not always the shortest distant around the track. Sometimes the fastest way around the track is actually the longest way around, where you drive as close to the outside wall as you can. If you do this correctly the combination of centripetal force and friction between the car’s tires and the track’s surface helps hold the car in place and you don’t have to use your brakes as much if you were running at the bottom of the track, and you can maintain full speed all the way around the track. Sometimes drivers will find because of the way their cars react to track conditions, the best line for them is the high line on two curves, and the bottom line on the other two curves. Happy Hour is the time when you can try these things out. If you watch Happy Hour on television, this is what the announcers are indicating when they say the drivers are moving all over the track. They are trying different lines to see which one is best for them in each part of the track.

 It would be nice for those of us with aphasia, epilepsy or Parkinson’s to be able to try different lines on the track of life to see which line works best for us.

 Happy Hour is also the last time before the race that the driver can communicate operational problems to the crew. The following are two hypothetical conversations between a driver and a crew chief during happy hour. 

         CREW CHIEF:  What’s wrong with the car? You’ve slowed down noticeably on the last two laps.

         DRIVER: This car is a piece of junk. It won’t turn going into or coming out of the corners.

         CREW CHIEF: Bring it in and we’ll change tires, spring rubbers and adjust the sway bar

         DRIVER:  Okay, I’m coming in next lap.

The driver brings the car into the pits area and the pit crew changes tires (Cars normally operate best on new tires); spring rubbers (taking out or putting in spring wedges between the coils in the suspension springs will change how the car reacts in the corners of the track, or adjusting the sway bar which change how well the front end and the rear end of the car are coordinated as they go around corners). This is similar to a medical team adjusting medication to help improve performance. 

Second hypothetical conversation over the two-way radio in the car:

         CREW CHIEF: What’s wrong with the car now? You were the slowest car on the track that last lap.

         DRIVER: I don’t know. The engine feels like it is missing (slang for one or more spark plugs is not firing).

         CREW CHIEF: Okay bring the car into the garage and we’ll run the diagnostics on the engine.

         DRIVER: Okay, I’m there the next lap. 

The driver pulls the car into the garage and the pit crew plugs in all the diagnostic equipment and runs the tests. Sometimes the tests show something wrong and other times they don’t, or sometimes they indicate something is wrong but don’t pinpoint the problem. That sounds very much like what happened to me the last time I was in the hospital for observation. The tests indicated problems but couldn’t pinpoint the exact nature or location of the trouble. What do the experienced crew chiefs do in this situation? They rely on their experience and make changes to the car that have helped other cars in similar situations. What do experienced doctors do? They rely on their experience and make changes to medications or treatments that have helped other patients in similar situations.

One very important component of this process of “fixing a car during Happy Hour” that I have not heavily touched on is communications. The driver and the crew chief (the patient and doctor) have to be able to communicate and understand what’s wrong and whether “fixes” worked fine , didn’t go far enough or went too far. 

Living with aphasia, epilepsy and Parkinson’s can be like experiencing happy hours at NASCAR races. The best teams that communicate well usually do well in the race, and often win.

 

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Epilepsy and Hole in the Bottom Lip

Living with Epilepsy and the Aftermath of a Traumatic Brain Episode

There’s a Hole in the Bottom of My Lip

By Baylis

In March 2009 I had a traumatic brain episode. A blood vessel in a benign tumor attached to my brain burst, filling my cranial cavity with blood and creating all the symptoms of a stroke. After the removal of the benign tumor, I was warned that I could have ongoing coordination and balance problems. After months of physical therapy, my balance and coordination improved. I was able to get around my home most of the time unaided. However, whenever I would go out, I needed the insurance and sometimes the assistance of a cane or a walker.

Then, in December 2009, I had four grand-mal seizures. I was now epileptic. I am on anti-seizure medication and my wife was warned to constantly watch me in case of new seizures. Recovering in the hospital from the seizures, I was warned that some of the balance and coordination issues could return, which they did. This necessitated some more physical therapy, that included lots of walking and  climbing stairs, some in place exercising and some simple games with inflatable balls. It’s been more than six months since the grand-mal seizures. I have not had another grand-mal seizure, and my balance and coordination are slowing returning to where they were prior to the December episode. My endurance has not returned yet so I am working to improve it each week.

In spite of the progress, I still have one concern. In the aftermath of either the brain surgery or the seizures, no one warned me about the possibility of developing a hole in my bottom lip. What do I mean?

Every time I drink liquids from a glass or a cup, I find drips either on the table or down the front of my shirt. It doesn’t matter whether I drink straight from the glass or cup, or I use a straw. The drips are still there. It seems to be worse with cereals or soups that I eat with a spoon. My wife keeps suggesting that I slow down and make sure that I get the spoon all the way into my mouth. I reassure her and I then take pains to show her that I am very careful about leisurely and steadily raising the spoon from the bowl without spilling any of its contents, and slowly putting the spoon completely in my mouth before “slurping” its contents. Even with these precautions the drips magically appear.

But my problem is not just with liquids. Every time I eat crackers, chips or cookies, I leave a pile of crumbs on the table in front of me. Toast, bread, donuts, muffins and bagels all have the same fate. The only logical explanation that I can conclude is that there is a hole in my bottom lip.

My wife’s first response when I told her about the problem was, “Don’t sweat it. Nobody cares. Everybody does it to a certain extent.”I shot back, “Well, I do care. I know I shouldn’t, but I find it embarrassing and annoying”. When this slipped out, my wife’s solution to this dilemma was to suggest the old standby, duct tape. What is that “Use Number 102?” I am not ready for that solution yet. With my beard, I know there would be problems removing the tape. Has anybody else experienced this hole in the bottom lip phenomenon? Have you found any workable solutions or it is time, as my wife suggested, for me to quit worrying about it and get on with the meal? People that know me know that I am always ready to get on with the meal.