Chapter 397 - Wheels in Motion

Monday was OK until her legs began to kick at 1515. Two hours later our itinerant hairdresser cut our hair and my beard. By 2015 she needed to lay on her bed.

Tuesday to Wild Dog Respite after a rough morning, needing a poo on waking at 0720 and by 1000 her head was wobbly and she needed to attempt another poo. She rang me at 1515 to bring her home.

Wednesday saw us take a comfortable drive to Hot Air City to visit the Living Centre place which has shed its OT's who used to give excellent advice on the use of equipment and fittings etc for those not 100% mobile. We were seeking advice about personal lifters. Anyway, one of the few staff there gave me good advice about other matters. Then an appointment at 1430 at the private rooms of Dr M. who she originally saw in the public hospital. This time I had all the scans with me! After looking at the scans he described what he would do for her and gave cautions about potential dangers of complications occurring. Instead of fusion, he described the procedure as "lumbar laminectomy". a matter of removing part of the vertebrae to provide greater freedom for the nerve fibres. He assumes she will remain in hospital for longer than a usual patient and will probably require rehabilitation following the surgery. When he asked, she agreed to proceed. October 12th is the day scheduled for the job. After stopping at the hamburger place on the way out of town we arrived home at 1830, changing the Duodopa cassette on the way. No dyskinesias at all today, not like last week when we saw Dr F. But by 2020 her legs and feet began to burn and tingle, usually the precursors to much leg kicking did not occur until after the pump was off and she was in bed. By 2235 they were severe.

Then at 0215 Thursday morning she woke me because she "was falling out of bed". On the contrary, she lay in the centre of her bed, fiercely  gripping the hand rails on either side. At 0300 she woke me again because all her bed clothes were on the floor; they were so. At 0845 she spilled Milo down her clothes and became quite hung-up that the pump bag was choking her and was very uncomfortable; she attempted to adjust the strap length of it. By 1230 the dyskinesias were very bad until 1400 when they ceased. She was "minded" by a Wild Dog carer while I attended an appointment between 1515 and 1645. When I returned her leg dyskinesia can only be described as vigorous and continued that way until I put her to bed at 2130. An unpleasant day after a very good one.

On Friday I made no notes other than "minor dyskinesia" at 1700 and none at 1930.

Yesterday, Saturday 19th September, and ignoring instructions, I reduced the duodopa rate down from 5.8 to 5.6 mL/hour. She attended Wild Dog respite but called me at 1330 to bring her home; severe dyskinesia began half an hour earlier. At home there were periods when she needed a fan blowing on her. She left her slacks off at one toilet visit, too difficult to get them on, so she needed to sit in the wheel chair with a blanket across her legs. The afternoon alternated between visits to the loo, periods of dyskinesia. A friend visited to tell us she took her husband  to Hot Air City public hospital during the week; he has cancer in his oesophagus; for months he has been unable to eat anything other than fluids.  At 1430 her chest felt tight so she needed to take her bra off. Her blood pressure was 128/75 86. I strapped a kitchen chair to the front of her recliner to give her legs more support. By 1800 her legs were quiet.

Today was a good day. No dyskinesia until late afternoon. She wanted to get outside, so I wheeled her out whereupon she took to weeding our raised walled garden bed, quite obsessively. Tonight my right hip is complaining with sudden sharp pains; it objects to lifting and twisting. Oh shit.

This past week she has alternated between days with leg kicking and days without, well perhaps only less.

Chapter 396 - Rocky Road Ahead

Leaving home last Tuesday at 1230, we were driven by a person from Wild Dog Care to Dr F's rooms arriving 15 minutes early at 1445 we then waited over an hour to see him. That man should do something about time management. But  "good" came from the delay, for by 1500 her legs were kicking furiously, without ceasing until we returned to the car well after 1700. So a professional saw her dyskinetic legs in action at long last. He asked a lab technician to stay back and give her a nerve conduction study on her right leg and arm, looking for nerve damage. Their guarded comments on completion suggested to me slight damage. Dr F. asked to see her again in 6 months and prefers her attendance at the West Beer clinic in November. He asked for reduction of her dose rate by 0.1 mL/hour/week until then. Well I'm speeding things a little because the following day I reduced it by 0.1 to 5.9 and again on Saturday 12th to 5.8. He mentioned that some patients need to run the pump 24/7 to avoid dyskinesias but not to attempt that yet. We will see; perhaps a little experiment in a few weeks?

Anyway, her leg dyskinesias continue to start mid to late afternoon each day, as do the frequency at which she needs the loo. She can tell me roughly when the legs are about to start because of burning sensations in both legs. At other times her legs and buttocks may be numb. At times she says she "doesn't know where my feet are" so she is always afraid of bumping her toes which readily detect pain. She has given up using slip-on shoes, even ones with a strap, because they are easily kicked off when dyskinesia begins, so now she wears lace-up sneakers.

Dr F suggested asking whether Dr M., neurosurgeon sees private patients rather than finding another who does. To my surprise he does and an appointment is available for this coming Wednesday. Even though we had mentioned to Hot Air City Hospital staff that we had private cover, none of the staff suggested that Dr M also saw patients privately.

I told Dr F of my scare on the day we turned off the DuoDopa pump in an attempt to stop dyskinesias then we both fell asleep and hours later I had difficulty waking her. He said the matter was not serious for that length of time; only after a day or two will serious complications of coma set in. So nice to know.

I have an old man's problem, hydrocoele, which I will leave you to research. Concerned with its progression I got a referral from our GP to a local surgeon, only to discover that he is on leave until November. I then made an appointment to see Dr H. in Hot Air City, the bloke who took pictures and tissue samples of some of my internals several years ago. My worry is whether the scheduling of our two surgeries, should such occur, will clash and how she will be cared for during mine.

Chapter 395 - Flickers of Sunlight

One of the mind exercising utilities I indulge myself (although my daily exercises with them have reduced to maybe once or twice each week) gave me a routine assessment a few days ago in which I agreed I had been in a bad mood, angry and suchlike in the past week but I was unable to complete the assessment because my lousy phone line terminated the test too soon. We have had good service over the years from Telstra and its peasants' marketing arm Bigpond but our landline for the last week has been too noisy to use for voice, although DSL is frequently useable; they estimate repairs completed by next Wednesday at 7PM. Anal Cavities!

Last Monday I initiated a dangerous incident. She was very dyskinetic during the morning, dropping off to sleep in the wheel chair. I had adjusted the DuoDopa pump down from 6.4 to 6.2 the day before. Following earlier advice I turned the pump off at 1430 in an attempt to reduce the leg dyskinesias (we have done this before for up to an hour to no affect) before going to a bone density appointment. That over we returned home where she felt chilled and the dyskinesia was reduced at a loo visit at 1720. Another loo visit at 1900 without dyskinesia, she had "feeling" in her left leg, her right leg tingled and her face was hottish. Both feeling tired, we went to bed at 2020 just to lay down for awhile; no stiffness, moving OK but her feet tingled. I thought about restarting the pump, she said "It's off during the night anyway" so with that observation I reacted like the mythical Adam and dozed away, and now seek to share the blame with her. I woke suddenly at 2210. When I went to prepare her for bed I was unable to wake her, her breathing was sometimes laboured, her body was limp. I debated with myself about calling an ambulance while I restarted to pump, the "morning dose" function was locked so I administered a bolus at 2225. Within 5 minutes she began to wake and at 2235 I was able to get her onto the commode, into the loo, removed her slacks & incontinent pants, back onto the commode, fitted her overnight incontinence pants then brought her back to bed. At 2250 she needed her water bottle for her dry mouth; she looked "dippy" and "not quite with it". At 2300 she was docile and dreamy. At 2400 I removed the pump, cleaned her stoma, syringed the tube and gave her the usual bedtime Sinemet CR. A quiet night was had by all.

Next morning, Tuesday, after the loo, I fitted the pump, having reduced the flow rate (as I had planned, wishing to have her stabilise for 7 days before seeing Dr F. next week) from 6.2 to 6.0.
There were some brown stains left on the towel she sat on on the bed after returning in the commode from having a shower. At 0900 with no dyskinesia her legs burnt while doing a motion. Then to Respite for the day. That evening she was very dyskinetic; I was tempted to raise the flow rate.

Wednesday was an average day, her legs "galloped" while on the loo while I removed her overnight bloomers; then back on her bed they merely twisted. From 1100 she was re-arranging her sewing room (again). She said she felt "poorly" between 1100 and 1300 but from then on she had a good day.

Thursday turned out much better. At 0830 her left leg was numb, the right partly so. At 1650 she took herself to and from the loo (on the wheel chair of course, no movements occur except by wheel chair or commode). A milestone! Although by 1825 she needed assistance to do so again, yet she said "My legs have not been shaking today, but my feet are bad". However, leg dyskinesias began around 2100. After our routine nightly procedures she became hot in the face and needed her fan on. I was woken at 2345 by the noise of her legs "scissoring" ( my term for the action) back and forth under the sheets.

Friday began quietly enough, although she woke early at 0630, upsetting my routine of attaching the pump around 0700 while she sleeps, then having my shower before waking her for the morning routine. She had mild leg dyskinesias all day.

Saturday began the same, except the fan was on already at 0640. During the morning routines I noted a red spot on her right knee; took a picture of it. At 0930 she needed no assistance going to the loo or cleaning her teeth. Then to Respite. While there she took herself to the loo without help. Each evening now dyskinesias begin after about 1930; for example last evening she took herself to the loo at 1900, but at 1930 she needed assistance to the loo and dyskinesias began in her legs. However, I will not adjust the flow rate lower at this time.

Anybody reading the above may fail to see improvement, but it is there. My hips and lower back attest to improvement.

Early in the week, delayed by our telecommunications problems, I had an informative chat with a helpful person from a carer oriented twig of the government, offering to provide me a budget to assist with respite and such help to make my life a little easier. As a result I am rearranging our scheduled weekly activities for Wednesdays (rather than Tuesdays) and Saturdays to be Wild Dog respite days and initiated PD clinics to occur at Hot Air City rather than West Beer to minimise travelling time and cost. And other things.

 Judy Collins sang "I really don't know clouds at all"