Chapter 26 - A Matter of Balance

For the last week, maybe longer, she has commented that she feels as if she is falling backwards. Perhaps in compensation, she leans forwards, assuming the posture of an Asian lady who has planted rice seedlings most of her life. She puts her bum against the kitchen benchtop to force herself upright. We discussed this going to bed last night. I queried whether she still has problems with the bathroom floor; no, she no longer senses that the floor slopes. A month or so ago she was afraid of the bathroom and several weeks have gone by without her need for assistance to dry her after showering or for dressing.

I was awake when the alarm sounded for her 6:30 meds. Back in bed she lay on her back; "Can you turn me? My bottom is stuck in a hole." I rolled her to face toward the window on her left side. I showered, a short walk and breakfast and she sleeps soundly in the position in which I left her.

A few days ago she surprised me by stitching some rose designs; she dreams of making a quilt using some rose designs she downloaded. Surprised me because for months now she reads group postings, emails, downloads designs either "freebies" or paid for, yet never gets around to stitching any. Weeks ago I repositioned everything in her sewing room to minimise claustrophobic, boxed in areas. Last night I removed her normal sewing machine from its position on her sewing table return, which was then pushed back into the cabinet. She said I was "forcing her". Hopefully not, just providing opportunities.

Earlier in the week she called me on the CB radio. She wanted me to see a medical programme on one of the commercial channels. How do you people watch those channels to be bombarded by poorly made, brash advertisements? An example - at the point when surgeons had lifted a flap of skin on a skull into which they began to drill with their Black & Decker the station went to a commercial break (at least I was saved from having to avert my gaze). Sorry about the soap box. The programme detailed in living discomfort the writhings and posturings of dystonia sufferers in the UK. Coming from the UK rather than the other place there was no extra emotionalism thrown in, not that there was any need to do so. We had considered dystonia to be a type of muscle contraction experienced by PD sufferers and others, rather than a disability in its own right. I spent some time yesterday researching dystonia in the "big library in the sky". Are there implications here for us? After all, the friendly specialist physician (not a neurologist) who discovered her in hospital said her movements at that time were dystonia due to over-medication. He always notes her facial responsiveness, her ability to express herself with facial expressions as atypical of a long term PD patient. Perhaps all the neurological disabilities, PD, MS & the others, are part of a long tapestry. She has a small piece of the pattern. She does not respond very well to PD meds; there are really no medications for dystonia.