Help! My husband is "always" tired, and sleeps almost 24/7!

[Silvana]

My husband, born 1955, was diagnosed with Parkinsons in 2009. Some year later we understood it was not Parkinson, instead he got the diagnos PSP. Please help me to find a way to keep him awake. He sleeps, or at least lays in the bed, almost 24/7. What drug, or treatment, will help him?

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Hi Silvana

I believe all medications for PSP symptoms should be on the recommendation of your neurologist (or GP if they have experience with PSP). However, others on this site will probably express their own experiences with medications.

Having said that, many Parkinson's and PSP (etc) sufferers have problems with fatigue and sleepiness. Some may experience this during the day yet have problems sleeping at night. The fact that their brains are working so hard to move, speak, swallow and think is a general reason for fatigue. Some suggest the loss of dopamine (found in Parkinsonism) causes much of this fatigue. In addition, the little power sources in many of the brain cells (mitochondria) are dysfunctional and it may cause something like chronic fatigue syndrome. Then there is a place in the brain (called the reticular formation) that is damaged in PSP and one of its many functions is controlling awakefulness.

In my own experience with my wife, who has PSP, and severe fatigue, we have a strict routine. I do not let her sleep in, and I help her out of bed at 6:45am, toilet her, back to bed with a cup of tea (usually a no no when swallowing problems are present, but she hates thickened beverages), wash her (she has a shower at night), put on skin cream, clothe her ready for breakfast at a table (without distractions). Then she has something routinely organised every morning, and after lunch she will have a sleep time for about an hour. In other words, we try to counteract fatigue (sleepiness) with activity. It sounds contradictory, but it works (with a lot of effort - so I have some respite myself for a couple of hours during a couple of the weekday mornings, organised through our service provider and friends/relatives). She is kept "occupied" during those mornings despite her limitations with slow thinking processes and low volume voice. By the way, she is mainly wheelchair bound and only shuffles a few steps with assistance.

I know there a time will come when my wife will probably not be able to stand, and want to stay asleep all the time. However, we'll try and stick to our routine as long as possible (without medications until our medical advisers suggest otherwise).

With your hubby you may not obtain his co-operation with a routine like I use with my wife - so I hope you can find a reasonable solution - medications may be counterproductive, but you'll have to rely on the advise of your medical carers - Good Luck!

All the best with the care of your hubby.