Chapter 284 - Helpful People

Up till last Tuesday there had been no contact from the local hospital occupational therapists following my talk to and referral from the District Nurse I spoke to about commode/shower chairs a fortnight earlier so I called into the Physio building at the hospital last Tuesday. The same place she goes for physio most Mondays. A pleasant young OT (occupational therapist for those ignorant about such things) spoke to me, telling me the referral had been placed at "medium priority" which I didn't complain about, since there is always someone worse off and that the process involved an assessment, loan of trial equipment, quoting for new equipment and somewhere 30 days delay was built in. It was pointed out that should we be in a hurry then perhaps a private OT, several visit our town, may be speedier. She was at Respite all that day, I stayed down town and when we returned home there was a message from the OT saying our priority has been raised to the highest. Too late to ring that day, I rang next day just prior to leaving for Hot Air City for her to see the PD nurse; had to leave a message. After playing musical phones until Thursday afternoon, delivery of a trial wheeled commode/shower chair was arranged for 11am on the Friday. Then on Friday the bloke delivering the chair rang to say he was delayed until 11.30, which didn't trouble us. So at precisely 11.30 the chair arrived, was demo'd, we chatted then he left, leaving a card specifying an appointment at 2pm next Wednesday when the OT will call (we had arranged this time on the phone) and assess the situation. So she has used the trial commode each night now and as a shower chair on both mornings since. Due to the bidet on her toilet, the commode cannot be properly aligned with the toilet bowl, the commode seat lacks a cut-out in it, she tends to stick to the commode seat but as far as being able to wheel her from the bedroom into the bathroom into the shower it's brilliant. The wheel locks are effective, giving her confidence in its stability. The commode lacks a lid so at night while it is parked beside the bed, the commode seat hole is covered with the lid from our own commode, this to prevent bed clothes dangling down the hole. When the time comes for her to have a bowel motion on the commode chair, I will wheel it and her into the other bathroom where the commode fits perfectly over the conventional loo. At this time she is self conscious about using the pan for such "jobs" (urine we have come to accept) and I am uncomfortable about emptying & cleaning the bowl. Perhaps lots of paper first? Also, I am concerned that she is unable to clean herself very well on the commode or a conventional toilet. Recently I found her removing the satin draw sheet on her bed; there had been "skid" marks because she said the bidet hadn't worked; when I tested it I was squirted in the face. To test the bidet operation, I need to press down on the seat to simulate the weight of a person before the device will perform and on that occasion I was looking to closely!

A 20 minute interruption there while she needed help off the loo. I have left our "old" shower chair next to her loo so that she is able to sit on it when she is unable to shuffle away from the loo after attempting to stand. When "off" her legs are stiff, the left foot turns inward and the action of taking a step causes pain, especially at the rear of her thighs. After several attempts, sitting on the shower chair between times, I used the wheel chair to take her out to her TV chair where she is using the powered pedals to flex her leg muscles.

Prior to seeing the PD nurse in Hot Air City on Wednesday, I captured her on my camcorder doing needle work on a quilt, shuffling behind her trolley while both "off" and "on", perched on the loo with sweat dripping off her head and her hair in damp rat tails. She was happy for me to show the PD nurse the videos, which had been recorded onto a micro SD card, fitted into my Android tablet which was positioned on the nurse's desk for viewing. We are 21st Century patients! The PD nurse wants to see her again in 3 months time, expecting her to make a decision on whether to have DBS or apomorphine. I think the PD nurse suspects she will be more comfortable with an apomorphine pump rather than a hole drilled in her skull. Although her medication is twice what the PD nurse feels is "normal" the comment was that there is little dyskinesia. The pain in her legs is mostly due to the excessive exercise from tremors and the sweating, swallowing difficulties are autonomic problems. Response to my leading question about future autonomic issues seemed to be avoided. The PD nurse agreed that the severe cramping, now largely gone since she recommenced Magnesium tablets, was due to excessive sweating, loss of salts and lack of salt intake but I was puzzled that the nurse (I will call her "Polly", not her real name) was unaware that Vitamin B6 interferes with the uptake of Sinemet. We must find magnesium tablets without the gratis B6. Until she returns in 3 months time she was asked to take Comtan, beginning with her 2pm meds and we are to report the effects immediately, for which we were given Polly's card with phone, mobile & email. I think I will report this afternoon by email to minimise the phone messages, Polly receives too many mobile calls. We were unable to get a script for the Comtan until late Thursday when we also had our flu injections from the pleasant Asian lady doctor we now see when our nominated GP is booked solid, as always. So she began Comtan at 2pm on Friday. She said she felt squeamish some time afterwards but no mention of tingles in the back of her head and the "someone walking over my grave" feeling I believe she experienced when she was on Comtan some years ago. There seemed to be no reaction yesterday. Her weight decreased from 82 kg to 77 kg over about the last 6 months. Polly doesn't wish to see any further weight loss.

We had arranged for her to attend Respite yesterday, Saturday, while I went to the computer club but she cancelled out of Respite after I detected she was somewhat fearful of going on a bus trip planned for the day. So we both remained home.