Chapter 143 - Subtle Changes

We collected the prescription from the GP then rather than go into the Club while waiting until 5.30pm we sat in the truck while a storm developed and raged for awhile. So last Tuesday she began the larger Sifrol dose. That day her doses were 6am CR/2 & S/2, 10am CR, 12noon S, 2pm CR, 6pm CR & S/2, 10pm CR/2. That afternoon, as for several days after she was very shaky between 2& 3pm. That night there were numerous trips to the loo and she told me later that she "had felt a presence in the bedroom". A friend took us to lunch at Spud Town, some 40kms away, on the Wednesday when she seemed subdued, perhaps because she was not keen to go. For the sake of the friend though, we needed to go.

On Sunday she decided to increase the Sifrol to 6am CR/2 & S/2, 10am CR, 12 noon S, 6pm CR & S, 10pm CR/2.

Yesterday & today she decided to iron our clothes. Until now we have been getting by without bothering for most of our clothes. She persisted, even winter things which will now hang in the wardrobes until next winter.

At 2pm today she needed to go to bed. She said that she felt very "fidgety". It seems she felt the same as yesterday although she had not mentioned that. A few minutes later she was up again because she was unable to remain still. She confessed that hands and legs were tending to "writhe", that is dyskinesia, so I can only assume she is bumping along near her maximum meds intake at the moment, or maybe due her labouring with the iron for quite a few hours. I suggested we walk to the hall to collect our mail. We walked briskly, she not needing any support at all. I decided we should rest on one of the seats near the pond on the way there. Soon after we returned she felt light headed and by 3pm needed sleep. She woke herself at 4.30pm, feeling better. She has been quiet tonight and is now watching one of her favourite DVDs.

Chapter 142 - Asserting Independence

Our stay in Big Smoke turned out to be a very satisfying break for us. I spent 4 tiring days in the workshop, the only bloke midst 11 women, while she was only on her own one relaxing day reading a book. Sisters & a cousin kept her company for parts of the other days. She even wandered a shopping centre for several hours while accompanied by one sister. I had intended visiting friends on the Sunday afternoon that we arrived but she had no desire to get back into traffic and anyway I was worn out carrying our luggage and equipment from the bowels of the car park up to our room. Her only difficulty was 5 nights on an unforgiving mattress.

Last Tuesday she decided to change to 3x125ug Sifrol at 6, 12 & 6 leaving the CR unchanged thinking this will help with sleep. Perhaps the change has helped. The MP3 player failed with a dead battery so I bought another. She did not want the PD meditation on the new MP3, just the sleep inducing file.

At the local GP she mentioned that one of the side effects of Sifrol was an increased risk of Melanoma. He checked the spot on her left leg (convenient because it is her right that tremors badly & has violent dystonia when she is under stress), declared the spot changed in size & referred her to a local specialist. So on Wednesday after a very cursory inspection (that is worrying, the spot was obviously a nasty one or else the bloke enjoys his work) he declared he was free to chop it, and another smaller one on her back, the following afternoon. Although the spot on her leg was in an area usually requiring a skin graft, he thought such a complication was not required. He performed the job the following afternoon. Bandaged on her leg & back she now awaits the pathology results which may take up to a fortnight.

She is doing a number of small tasks now that I find unusual after so long a time. Simple little things like taking out kitchen rubbish that we collect in super market plastic bags on the bench top, picking up the bath mat (I keep asking her not to do that because on the floor the mat reminds me to mop the shower) and other small actions, hardly noticeable that I can't remember. And I haven't helped with dressing in ages.

She showed interest in an embroidery project I will be involved with, so I enrolled her. Perhaps completing the project may restore her confidence & enthusiasm.

She becomes annoyed when I have attempted to have her increase the Sifrol dose in preparation to taking the 250ug that the GP has wished to prescribe for her. Last week she should have arranged to visit the GP for the new prescription, postponed that I suppose while thinking of the job on her leg, so today will run out of the low dose Sifrol. Early today she made an appointment for 3pm and then contacted the chemist who will order the larger Sifrol dose on spec, to be available after 5.30pm. I'm proud she is organising these matters by herself.

Chapter 141 - Mudling About

Her sleep patterns are returning to normal, whatever that may be. She decided to cancel the Sifrol at 10pm from last Wednesday, but of course there was no immediate effect, sleep came at 4am Thursday morning.

At the GP on Thursday he advised not taking meds at 10pm, rather only 4 Sinemet CR during the day plus the 3 Sifrol. He doesn't appreciate the need for dopamine levels to aid turning at night to prevent discomfort and pain. So she has decided to reduce the CR to a half at 6am & 10pm and only take Sifrol at 6am & 2pm. He had expected her to go to the 250 uG Sifrol but she asked for another 10 days prescription of the 125 uG. Of course the chemist again had no stock of this low introductory dose so we had to return for it on Saturday.

On Friday, rather than return home for lunch between seeing the GP & the podiatrist we chose to stay at the club where she had a large meal that played havoc with her; very bloated & uncomfortable all evening so she ate nothing more. She mentioned the mark on her leg to the GP; he thinks it is larger, an appointment to see a specialist. Much to her annoyance, I dobbed her in by saying she had another mark in a place she prefers not to show people. The GP wanted to look (dirty young bloke!) but she refused. I expect the specialist will though.

Last night she seemed to sleep well, only rising once, although I know not how long she took to fall asleep. She is asleep now.

She has had a busy week; Physio on Monday, KYB on Tuesday, attended the funeral for a neighbour on Wednesday, hair cut on Thursday, appointment with the GP, a too large lunch then the podiatrist on Friday. Yesterday, Saturday she decided to iron some of our clothes for our trip today.

Now that the day to drive to Big Smoke City is here, I don't feel as confident about her well being while I spend 4 days in a workshop.

Chapter 140 - A Medication Change

On Thursday an appointment for both of us with our local GP to replenish prescriptions. We expected no surprises. She may have been tremoring more than the GP usually sees. He reached for some literature, saying "There is some new medication ...." not knowing that we have read the literature, knew some on it and had queried the Caring Physician about it, known as Sifrol here in Oz. He prescribed the lowest dosage 125 uG 3 times a day. The chemist had none in stock so I needed to return the next day for it.

She took the first Sifrol at 10pm Friday night. She rose for the loo 6 times between 11pm and 6am meds on Saturday. A burning sensation from her feet up to her knees, the remainder of her was cold. When she lay on her back, her neck & shoulders were stiff although her head vibrated. She saw small spiders on the wall near the curtains but she knew they were hallucinations because they disappeared when she closed one eye. In consequence she had little sleep, three times through the MP3 player was no help. She felt unstable at 8am when she rose. Even so, she asked me to take 2 loads of washing out to the laundry where she put them through the machine. The Kids arrived for lunch. She enjoyed being with the three grandchildren.

During Saturday she took Sifrol in addition to Sinemet CR at 6am, 2pm & 10pm. That night, she only rose 4 times and the MP3 helped her to return to sleep. No problems showering, washing hair & dressing. There were no shakes at all & her balance was OK at 9:30am. Then a little before 11am some shakes that subsided after which she felt chilly and restless for an hour. By 2pm she felt really good so she sorted through the paperwork for our trip next December, but by 3pm was very tired so laid down with bad tremors. She had asked to be woken within the hour so I did, then she stayed in bed another half hour. Then she watched a strange cartoonish item at the end of a Doris Day DVD and that seemed to trigger an eye sight problem. Her right side peripheral vision began to "shimmer" at a distance of about 1 metre from the centre about 2 metres in front of her (I moved my finger across the front of the TV until it reached the point at which the shimmering began), As far as I could interpret, this was a similar effect to that which doctors have diagnosed as a form of migraine when it has happened to me. Her blood pressure was 130/80 75 at the time. The effect lasted about 30 minutes and her balance was off, then a shake free evening.

Another wakeful night followed, rose 4 times, head tingling then "crawling", her body felt "alive". She turned repeatedly in bed. She slept well after 6am. We attended the First of the Month Lunch at the hall and she was OK except for some shakes. She found her weekly physio Falls Group much less of a struggle during the afternoon.

Last night 4 trips to the loo, restless, little sleep until after 4am. She was up to attending the funeral of our neighbour at the Cathedral which was filled to overflowing. We were fortunate to find some rickety chairs in a side chapel otherwise she would not have been able to stay to remain standing for the length of the service. She was a little puffed walking back to the vehicle, a few hundred metres away up a hill, with 3 or 4 brief rest stops.

Tonight we have decided she will skip Sifrol at 10pm. Apart from the weird side effects, Sifrol seems to have reduced her tremors, stiffness and her outlook seems brighter.