Chapter 436 - Even After 25 Years

She was diagnosed with PD 25 years ago. You would have thought in that period of time we may have read something about the effects of sleep or maybe some enlightened person may have told us. Perhaps we haven't listened. Perhaps experts believe that too much information confuses we old farts. I have used the Sara Stedy to transfer her from her bed onto the loo each morning since the beginning of this year. I have noticed the ease with which she is able to stand upright onto and position herself on the Sara Stedy so that I am quite easily able to flip the seating flaps into position for her to sit on before trundling her out of the bedroom into the bathroom. Later in the day, especially once her legs become dyskinetic, when she needs the loo she is unable to stand upright on the Sara Stedy, instead she simply bends at the waist, with knees slightly bent. This posture makes flipping the seating flaps into position very difficult indeed.

During my last post I recorded that she felt unwell and asked to lay down. Her legs were dyskinetic. So I trundled her to bed on the Sara Stedy and as usual at that time of day she was unable to stand upright as I described above. She slept an hour. On waking I had her stand on the Sara Stedy and noticed she was able to stand upright. Her legs were NOT dyskinetic and remained quiet for about an hour. I had discovered something! When this was mentioned to Wild Dog Carers this effect was obvious to them because everyone knows that a siesta is good for one. I think my point was missed. So the next day after lunch, both legs dyskinetic, I placed her on the bed, room darkened, quiet soothing music from AccuRadio, leaving her to enjoy a short sleep. Not so. She remained awake, her legs kicking away. So I put her back on her wheelchair an hour later.

Yesterday, Saturday, her legs were dyskinetic from about 0930 and when time came to leave for Saturday respite while I shopped, she did not wish to go. Then at 1040 after being on the loo she asked to lay down, both legs dyskinetic. Again the bedroom was darkened, AccuRadio played soft music. This time she slept. An hour later she called me on the CB, awake, wishing to get up. She stood upright on the Sara Stedy, no dyskinesia as I took her to her wheel chair. She was able to transfer herself from wheel chair to loo. At noon I bundled her into the car, bought some handcraft magazines for her to read while enjoying a milkshake  before I did my supermarket shopping at the chemist and Coles, I took the shopping to the car then returned for her to find both legs dyskinetic. At home she needed assistance to get onto the loo. As before, she had decided to lay down, was able to fall asleep and then experienced a little over an hour free from leg dyskinesias.

In between the two sleep events described above, we attended the West Beer PD Clinic last Wednesday, seeing neuro Dr C this time; the neuro who initially interviewed her before she was placed on Duodopa. I gave Dr C some annotated prints of the FitBit results as well as a couple of photos of two postures when she stands in the Sara Stedy. Dr C said similar beneficial effects following sleep have been noticed in other patients. At home I searched for on-line references about the benefits of sleep to Parkies but only found material about sleep disturbances. The PD Clinic nurse said she would ask Dr C for me. My mother-in-law used to live in a retirement village where she knew a Parkie who went to bed and lunch each day, staying there till next morning.