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Saturday 9 May 2015

Being Alive and Dead at the same time

I was getting only 3 - 4 hours of sleep each night; now, I am getting 6. Why? What has changed? The only thing different in my life is the pill I am taking for the caffeine study so, either the caffeine or the sugar pill placebo is the cause. Who knows. All I know is that I wake up feeling pretty rested. Too bad it doesn't last long. I am soon exhausted, but in a different way.

The type of exhaustion I am talking about arrives around 2 in the afternoon and it cannot be cured by sleep. It is dangerous and embarrassing.

Yesterday I went to a lecture on three topics (1) the role of the mortgage broker (2) Changes to various Acts (3)the use of a power of attorney in dealing with land. I had to attend as part of my continuing education. It began at 1pm. The panel chairman gave a few remarks which I enjoyed but by the end of his remarks, exhaustion begins to settle into my body. It is as if somebody is filling me up with water - the tiredness begins in my lower legs and starts moving up my body until I am full. About half way into the mortgage broker's presentation, I was all-consumed with exhaustion, fighting to stay awake and I mean that literally. My eyes would momentarily blank out and I would suffer one of those head shakes that everyone suffers when overtired and trying to stay awake. Consequently, I heard nothing about mortgages and what little I did hear, I did not understand. I told myself to go home, but I was worried I might fall asleep at the wheel, so I stayed. I suffered through an interesting discussion on the Acts and just as the speaker was closing, as suddenly as it had come, exhaustion left me. I was wide awake for a particularly interesting and entertaining presentation on powers of attorney. I heard it all and even stayed for the question period.

This mid afternoon tiredness freaks me out. I decided to research the problem and discovered...I had read it all before. However, the best description is still found in the Fox Foundation and bears repeating:

One of Parkinson’s more insidious symptoms is fatigue. This is not your garden variety bone-tired. This is fatigue on a cellular level. Your body is working overtime to accomplish the simplest of tasks: Taking a shower, answering the phone, pouring orange juice. In addition, you may be coping with the combination of possible cognitive problems knows as "Parkinson's apathy". These problems include difficulty initiating projects, inability to follow complex instructions, short-term memory loss and difficulty in switching gears midstream.

Now do you get the picture? My reality is a continuous annoyance!

3 comments:

  1. Try explaining this one to an LTD insurance aduster. I am four years post PD diagnosis but have been able to hold my symptoms to the "continuous annoyance" category, largely through the sinamet, and able to carry on my law practise. In recent months, the fatigue/drowsiness combination has made its appearance, and has gradually made it impossible to work productively in the afternoons, reducing me to a part-time partner. One of my neurologists thinks that this Excessive Daytime Sleepiness (oh, yes, it has its own acronym, EDS) is a side effect of the levodopa (he thinks that the night time sleep disturbances may be related to aging, which doesn't really ring true in light of the PD literature). The gradual effect of these things, in combination with answering my doctors "how are you doing?" with "fine", leads the insurance adjuster to say "well you've never mentioned this to your doctors." All I'm saying is that some circumstances lead to the elevation of some symptoms above "continuous annoyance" !

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  2. I concur with your last sentence and I don't believe the fatigue is age-related or the use of l-dopa. It is just a part of PD. Fortunately, I am a sole practitioner and have a home office, allowing me time to start work around 6AM and take an afternoon nap that helps somewhat. Last night, for some strange reason, I had an 8 hour sleep for the first time in a decade but around 2 in the afternoon, I was exhausted. Unfortunately, I don't have LTD insurance so I keep on working. I swore I was going to retire fully in June but have not been able to turn away business. I have promised myself not to work this summer and I fully intend to keep that promise. I feel more relaxed at our cottage and the exhaustion is not so severe - still there, but manageable. Maybe it is work related. I must do some research on whether or not lawyers have a higher incidence of PD. You never know. Good luck with your insurer and thanks for taking the time to comment.

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