Chapter 157 - An Aborted Experiment

By not keeping regular, annoying & intrusive notes I seem to be losing touch with her medications. Friday last week at a visit to the GP she asked for a prescription for Sinemet so that she could fill in mid-morning & afternoon to ease her through those bad periods. He talked her out of that idea instead suggesting she take instead 500mg of Sifrol at those times. As far as I can determine from my partial notes in the desk diary, she did not take extra Sifrol until the following Wednesday, when she insisted that she take a Sinemet CR with the Sifrol. By late that afternoon she needed to sleep and by 10pm she was beginning to stress, felt very bad, having that feeling that "someone was walking over her grave". She describes that feeling similar to that shudder that passes through one's body around 4am when one is in the middle of 7pm-7am 12 hour shifts. I convinced her not to continue with increased meds until next week, since we were to have lunch with her sisters at the club up the highway on Friday, when she would not wish to be feeling bad. So she has returned to 1CR 500mg Sifrol at 6am, 12 noon,6pm & Inderal at 10am, 4pm & 1CR at 12mid. She says that taking Inderal at 10am & 4pm controls the shakes at those off times although her balance is not improved.

I had the 4WD serviced on Thursday. Next morning, 10kms out of town all the warning lights on the dash came on like a Xmas tree and as I pulled into council road metal lay by steam & fluid shot out from under the bonnet. Road service was there about 10 minutes after calling and a short time later a tow truck. I suspect that when I told the service operator that my wife had PD and was unable to walk over rough ground to seek the shade of trees the alarm bells must have been pressed. Whether that may be or not, we were most appreciative as the temperature was already in the mid 30's.

Much pushing & shoving was needed to get her into & out of the tow truck, a dual cab vehicle. The rear was impossible; she was unable to climb the 3 rung ladder mounted below the door, but with the aid of the small stool she requires for our 4WD she was capable of being shoved into the front seat.We spent the day in our town out of the heat at the club waiting for repairs to be made. Unfortunately, damage to the radiator ruined any thought of driving home. A neighbour gave us a lift.

In the next day or so I will try to have her take extra Sifrol without CR. She is amazed at the quantities of meds reportedly taken by PWP's who are posting on the local PD group. She thinks their neuro's are piling on meds to fix side effects to the extent that some are considering DBS.

Chapter 156 - Life Ambles Along

Two weeks have gone by so lacking notes I am hard pressed to comment on her progression. We decided she would stay home on her own the Friday after my eye operation, for on that day I had to return to Big Smoke for a check-up. I drove to the station to catch the train. I rang her at various points along the way -arrival at the station, Big Smoke, the specialist's etc. By so doing she did not worry that I may have missed a connection and I knew that she was well. This was the first time that I can remember that we have been apart for more than 2 hours in many years. Before leaving I assembled her collapsible walker so that she was able to walk around to her friend's place where she had been invited to spend part of the afternoon.

Wednesday last week was her final routine visit to the Procedures room for her leg dressing. When the surgeon saw the crater in her leg he was pleased to say that "we have got there". It is in the eye of the beholder because the wound remains unsightly to me. Each day now she leaves the wound uncovered, only attaching a light dressing when she goes to bed or when we leave the house.

She has been suffering what I think others have called the "sundown" effect of Sifrol, a wearing off, sleep inducing period late each afternoon. I'm not sure that she has been sleepy so much as shaky and ill-at-ease both in late morning after 10 and late afternoon after 4. She had decided to throw some additional Sinemet into her regimen but needed a prescription. Our GP (no neurologists these days as I have commented before) did not think much of that idea so suggested she take 500mg of Sifrol 4 times a day rather that 3. For her own reasons she does not think much of that idea so instead has decided to reposition the Inderal she has been taking for years, originally prescribed to minimise leg tremor. So as from yesterday she now takes: at 6am 500mg Sifrol 1 Sinemet CR; 9am 1 Inderal; 12 noon 500mg Sifrol 1 Sinemet CR, 4pm 1 Inderal 1 Astrix, 6pm 500mg Sifrol 1 Sinemet CR, 12 mid 1 CR. She told me that the tremors had reduced in late morning and afternoon but "she still felt the same inside".

Each day she has embroidered commercial designs on her machine. I don't think she intends to do anything with the completed designs, executed on felt, although some are quite suitable for framing. The activity is good therapy for her. I am hoping the activity will lead to some "projects". Around Xmas she embroidered designs which she fitted into cards which were mailed to a select few. Some Philistines failed to realise that she had crafted the cards herself and in some cases that embroidery was involved. Says something about the value of the social habit of flooding the mail system with cards.

An elderly friend from the PD Support Group rang yesterday seeking to borrow our book on panic attacks. Our copy is loaned as is the copy we obtained for the Group. I suspect quite a number of PWP's suffer this way, unaware that these feelings of discomfort, dread and imminent death are to a large extent treatable side effects of PD. This particular lady has also been helped by the physio recommended by us.