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It is hard to describe to anyone how difficult it is to cope with the amount of sleep that I get. I sleep very little, and writing in the middle of the night only reinforces that fact. I came across a study comparing a control population with people who have PSP, and the difference in sleep patterns is staggering. The chart makes it impossible to ignore what is happening.
- The time it takes to fall asleep is five times longer.
- Time spent awake during the night after first falling asleep is nearly double.
- The total amount of sleep is about two hours less.
- The amount of REM sleep is less than half.
- Even when asleep, the overall efficiency of that sleep is about 20 percent lower.
It becomes a vicious cycle. The less sleep you have, the more irritation, lack of performance, lack of motivation, lack of empathy, and lack of patience set in. PSP then amplifies those problems, and the neurological changes of PSP further reduce sleep. One issue feeds the next until the days feel harder and harder to get through.
Lack of sleep affects so many parts of life, mentally and physically. It influences mood, balance, decision making, motivation, movement, and the ability to cope with the everyday demands of PSP. There are too many consequences to list in one place, but every one of them matters.
I have tried pills, CBT, cannabis oil, sleep hygiene, and anything else that seemed like it might help. None of it changes the fundamental fact that I sleep far less than other people. Being retired only stretches the length of the day, which gives more time for exhaustion to accumulate and increases the risk of freezing, falling, and other neurological complications linked to PSP.
I wish I had clear answers about how to improve sleep because I need them as much as anyone. What matters most right now is that people understand the extent of the problem. Awareness changes the way PSP patients are treated, supported, and spoken to. These statistics are not normal. They may be true of some other conditions as well, but for PSP they are especially severe.
My sleep has improved slightly over the last few months, mostly because of retirement and reduction of stress but the exhaustion is still overwhelming.
For reference, the research paper called Sleepless Night and Day, the Plight of Progressive Supranuclear Palsy appeared in the journal SLEEP, Volume 40, Number 11, 2017.
