Chapter 589 - Things As They Are

Almost a month since I posted. Several times I put my feelings into words in my mind in preparation to typing here but those words, those emotions fled in the face of the thoughts of discomfort and pain reproduced in common words. On two nights, a week or two ago, I spent more time awake than asleep, attempting to position her in bed to stop the dyskinesias. I began transcribing one such night from my scribbled notes to send to the neurologist but I just could not finish and put it aside for a more convenient time which I doubt will never come.

A Telehealth appointment with her neurologist was planned to take place one afternoon about 1430; then we were called to say he was running late and would call later. About 2100 I was woken by the land line phone ringing, as I scrambled to grab it, one of my mobiles rang. Before I found it, it stopped and a message asked me to call back. I did not bother, at 9pm, half asleep, I was in no mood to speak to anyone. At about 1800 the following night he rang and from the conversation I only remember a suggestion to raise the Duodopa night flow rate by 0.1 at monthly intervals which may reduce day time dyskinesia. I raised it to 2.7. He also intended to send a script for Exelon 10, doubling the strength. Exelon 10 patch was used this morning in place of the Exelon 5 patch.

I watch her now, on an Echo Dot, beginning to wake after a "siesta"; I must go to her before stress arouses too much dyskinesia.

So I just took her to the toilet on the Sara then to her wheelchair, feet up watching a BritBox comedy while eating an ice cream. From time to time she grabs the LHS of her tummy, at the bottom of her rib cage. She has only just begun to admit she has pain there. Because of her irregularity and constipation, as evidenced by marbles rather than proper turds in the last few weeks I have been giving her a laxative powder at breakfast each day causing her to regularly produce turds a cat would be proud of. The Wild Dog nurse makes house calls and she has been coming to check on her stoma which has an infection that won't go away (another story, for which the GP has doubled the strength of an antibiotic). Last Tuesday I mentioned to the nurse that she had mentioned "pain" on her right side, "near my old appendicitis scar". The nurse pulled out her stethoscope, listening on each side of her tummy for gurgling sounds. The RHS was OK but the LHS produced less sound, and that could be indicative of constipation and/or "blockage". Another laxative was suggested at lunch time. On the following day  quite a quantity of excrement (putting it politely) was produced. Since then much less dyskinesia has occurred, although that may be coincidental, but I wonder whether bowel activities and the dyskinesia may be linked (you know me, I look for patterns and associations).

Another issue has caused me concern, her anal prolapse. This often causes her to remain on the loo longer than she should, saying "I can feel it there about to drop". I sometimes peer behind her while she is seated  on the loo and tell her it's only the prolapse giving her the "feeling". I once took a photo to show a doctor (I think I did, I'm sure of it) but he was not impressed by the "size". She now has a new commode (another story to be ignored) so yesterday after removing the pan I took a photo of the prolapse to show to her GP later at an appointment for only me later in the day. The doctor wants to see her to refer her to a specialist for "comments and planning". This afternoon she has begun holding her tummy, saying "it grabs me". When I ask how long this problem has existed she implies for quite awhile. "Why haven't you told me before?" She replied "You would only take me to the doctor". And I will, an appointment has been made for 1615 on Monday. Earlier times were available but because our son and his better half are visiting for lunch on Monday, bringing her two sisters with them (one widowed 2 weeks ago) I opted to take a later appointment, made on line most conveniently.

As I bent over her as she woke this morning at 0730, I said "I love you", she smiled a little and mouthed the words back to me.