Chapter 495 - A New Generation

Early on Friday 20th July we became great-grandparents of a baby girl. Some photos suggested she looks very much like our daughter, her grandmother, did when only a few hours old, so many years ago. A bonding reaction I suppose, but she does have the cap of black hair. Too far away for an old timer to drive in one day to see her and matters of disability equipment make make it difficult for simple overnight stops along the way. A problem to solve.

Reducing the Duodopa flow rates by steps throughout each day certainly reduced her dyskinesias but also reduced her mobility as expected. On Sunday 15th July the steps were: 0630 7.0; 0950 6.0; 1130 5.0; 1315 4.0; 1500 3.0; 1900 2.0 till next morning. On Saturday 21st July the steps were: 0620 6.0; 0930 5.0; 1055 4.0; 1300 3.0; 1520 2.0 and at the end of that day I wrote "Best FitBit chart ever". I find even though I set alarms on my phone to remind me to change the pump settings, I sometimes leave my phone elsewhere or I ignore it altogether so the steps are not very accurate time wise. Anyway, I will annotate the FitBit print outs and post some here another time. At least I have proved to myself that a continuous flow rate above 5 is excessive, at least at this time. I suspect her  dyskinesias reduce following changes in flow rate but then increase again some days later.

We met the sisters for lunch at the half way place yesterday without her legs kicking madly by meal's end. There was a burst though when we arrived home; I suspect stress driving in moderate traffic on the return.

The local Dance for Parkinsons began again last Tuesday 1000 - 1200, and as I expected. a burst of dyskinesia at the same time. On Thursday, a return to the dentist for a check and clean yet only a single spike of 1000 steps in FitBit chart during the ordeal. Next Thursday for a repair visit requiring drilling and water spray may be a different matter.

Chapter 494 - Was It a Dream?

Yesterday I was surprised when the Wild Dog Carer, who came to give her her Friday morning exercises, congratulated me. "What for?" I asked. "For becoming a great-grandfather of a little boy" she replied. Somewhat embarrassed, I had to explain that to my knowledge, based on advice about two weeks old, that nothing had happened yet. I suspect someone had been dreaming or imagining the good news; she was unperturbed by the confusion. I was tempted to phone in the hope that a genetic defect has not been passed to another generation but decided not to, having no wish to worry her.

I am continuing the lower stepped doses on her Duodopa pump. According to the FitBit traces of her right leg, she suffers less dyskinesias yet she seems unaware of the reduction possible because many are of small amplitude and are often "inside" her legs not noticeable to the eye. I have problems remembering to make the frequent changes so I attempted to re-programme our TabTimer, a real test of my cognitive skills but after display segments began failing (I suspect I caused that) I found an application to run on my Galaxy that does the job but that means I need to carry the thing with me all day. Of an afternoon she still looks for a chair or something similar to raise her legs for comfort. She usually prefers not to have the "legs" and footplates attached to her wheel chair.

Perhaps the lower Duodopa flow rates tend to make her sleepy of an afternoon but no further sudden sleep events have occurred.

Last Sunday another slight ano-rectal prolapse happened. We have another referral for a specialist  who I must contact in the coming week. I saw a reference somewhere that probiotics may be helpful for constipation and wondered whether taking such after her tooth extraction may have been the reason for her bowels being "looser" and expelling a mass rather than "marbles". Although I have not consulted any type of medical professional about this, I on-line ordered two bottles of "50 Billion" probiotics and she now takes one each day at breakfast. An obvious side effect is flatulence which she confuses with a need for a bowel movement. Her bowel movements, mostly, are bulky, soft and only sometimes an odd marble or two.

We attended our local PD group on Thursday because the local dance group that ran the trial Dance for PD classes recently were to tell us all about the dancing. Having attended the trial classes, streamed classes from Toronto and bought the DVD and CD set from Brooklyn (which she performs to most mornings for an hour) we didn't really need to attend but she wanted to and afterwards we visited her podiatrist before having lunch at the club.

For some weeks I have ordered our groceries on line for delivery, partly due to the phasing out of single use plastic bags. Also I am fed up with the multiple handling and standing in queues. So our weekend excursions down town are much more pleasant for me not having to rush about if she remains in the car or the frustration of pushing a wheel chair with a trolley attached midst other old farts and the general crowds.

Such a beautiful fresh sunny morning to day I pushed her in her wheel chair around our village.

Chapter 493 - Wednesday Excitement

Wednesday last found me at the far end of our main street taking advantage of a gift voucher from the Hot Air City carers group, a voucher for a massage, something I have never experienced. While making a booking my phone rang; damn I thought my mad mate ringing about having a coffee at the Club. Only when out on the foot path did I check the caller; the Wild Dog Carer looking after her since this was my respite day. I quickly rang home to learn that she "had fainted", out like a light for only a number of seconds, banging her head on the collapsible table among the Lego pieces. I walked back to the car parked at the Club and returned home. She seemed normal, the Carer may have liked to call an ambulance, I decided not to. Her blood pressure was about normal for her 113/62 on my Omron which is difficult to use because the cuff size is somewhat too large for her; her temperature was 35.3 C in her right ear, her movements were normal. Some months ago on a Saturday morning when her movements were sluggish and she was a little dopey, taking her to the hospital resulted in the usual emergency tests being done ECG, Xray (or MRI I forget), blood tests, referral to our GP, referral to a specialist, ultrasound scans on her chest, 24 hours on a Holter monitor, all resulting in a conclusion of maybe a TIA occurred and minor heart irregularities. For her age she was pretty good. Anyway, I hung around home for an hour then went back to town to buy her 5 winter nighties (her need for bedroom fans has lessened these cooler nights) and have some lunch. There has not been a repeat performance of "blackouts" yet.

Anyway, I again searched on line for precautions for the use of Duodopa and in the midst of the usual sales/marketing junk one is returned by Google these days was a "Duodopa - Product Information" document titled "Duodopa Indications, Dosage, Precautions, Adverse Effects". The following paragraph caught my attention:

Sudden Onset of Sleep
Patients receiving treatment with levodopa and other dopaminergic agents have reported suddenly falling asleep while engaged in activities of daily living, including driving a car, which has sometimes resulted in accidents. Although some of the patients reported somnolence while on levodopa, others perceived that they had no warning signs, such as excessive drowsiness, and believed that they were alert immediately prior to the event.

I really can't recall ever being advised about patients falling asleep suddenly while on levodopa medications, let alone in regard to Duodopa, especially now that she was advised to use a daytime dose rate of 7mL/hr, I think the highest dose she has been on so far.

The neuros suggest diphasic issues are causing the dyskinesias that she mostly experiences after mid-day, yet the above Product Information states "The dose of DUODOPA may need to be adjusted downwards in order to avoid levodopa induced dyskinesias." Perhaps Abbvie, the manufacturers of Duodopa, aren't aware of the word diphasic? We first learned the term when she was on Apomorphine, as the reason for the confusion when attempting to maintain a diary of her leg shaking.

So I have commenced a flow rate reduction regime as follows;

about 0630; change from night rate 2.2 to 7.0 day rate
1000; 7.0 reduction to 6.0
1200; 6.0 reduction to 5.0
1400; 5.0 reduction to 4.0
1600; 4.0 reduction to 3.0
1900; 3.0 reduction to 2.2, returning to the night rate around bed time

The above changes have not taken into account the approximate half life of Duodopa of about 1.5 hours (according to Abbvie). I'm unsure whether that needs to be considered; I'm just trying to reduce the flow rate to minimise the dyskinesias. The FitBit is around her right ankle 24 hours a day except when showering. Although making changes every 2 hours is bothersome, it must be better than simply stopping the pump for short lengths of time as once advised.

Each morning from around 0900 she follows along with one of the three Dance for PD DVD's we bought on line. She readily does the dancing from her wheel chair placed in front of her PC now placed in the lounge room. A new DVD drive has been installed on her PC so that I could have mine back. Sometimes I play the piano pieces from the Dance for PD CD's on the audio system, at other times I let AccuRadio piano music play endlessly from her PC; I think we both find tinkling piano pieces restful.

Although she has returned to fiddling with pieces of fabric for patch-working, she has been spending a lot of time building Lego objects for which she needs a lot of help, for she has difficulty positioning pieces and even though the small diagrams in the booklets supplied with the two kits are clear enough for me to follow she has problems rotating blocks mentally and physically into place and often skips steps to become confused. Being 3 dimensional, Lego must be more difficult for her than positioning fabric pieces. She likes to sort the blocks into groupings, usually colour. The Wild Dog Carer was assisting her last Wednesday, unfortunately rushing the work and being too directive rather than allowing her to work at her own pace. I will buy a few more Lego kits.

She has no residual teeth problems from last week's extraction and her course of antibiotics is complete. Even though she was taking probiotics to prevent it, I suspect her bowels were "looser" over the past week and are now returning to unfulfilled urges and marbles.

I am feeling much better today; the infections have gone, no sneezing, minimal coughing and nose blowing at about my usual rate. And she seems more subdued, quieter.

Chapter 492 - Writing This is Just Another Chore

If only I didn't procrastinate so much; delaying a task postpones effort but then my mental checklist reminds me at inconvenient times to initiate or complete the task and that annoys and irritates the hell out of me. I forget the stillness, quietness that results once the task is out of the way. For instance writing this blog. Events happen, my thoughts tell me Posterity (whoever she may be) may be interested about the details, I postpone, forget, then later have to refer to my spiral bound A5 notebooks in which I record daily events (unless in the daily grind I forget to do so). The dental assistant where I had to take her last Thursday (more on that later) was surprised that I knew the names of her medications to write on the inevitable form required to be completed at a new dental practise; I remember because I write the words several times each day as I administer the meds. So once I finish this blurb I expect to experience a small sense of relief.

The last visit to West Beer's PD Clinic Dr F. cranked up her daily rate to 7.0 mL/hr. I suspect he believes more is better. I remember eons ago when he had her left leg injected with Botox that he asked for her to have a bolus, to be repeated 20 minutes later when the first had no effect on her dyskinesias, so neither did the second to my eye but he thought it did. Anyway, we were to return to the Clinic a week later, except my developing "Man Flu" had me cancel that appointment so another was made for two weeks later than that so last Wednesday 27th June we were driven up there again by Wild Dog. Half way there an overhead road sign warned that half way along the M7 a prang was causing long delays. We decided to use the toll free shorter but slower route instead (as I was tempted to do last trip just to check out the off-peak traffic conditions in the rain). The stop-start conditions were bearable and half way along modern technology told me that the M7 had been cleared but we arrived almost on time and were able to use the toilet facilities prior to being called into whatever neurologist was  available; as it turned out a young one who went through the usual routines to see how bad her finger fiddles and nose tapping really were. He was unaware of her inability to stand, so much for their records. He was not particularly interested in my 20 or so days of FitBit charts of her right leg since she had been on the dose of 7.0. He was then relieved by a more mature, suited, neuro (Dr F was away) who commented that my observations with my brand new non-contact thermometer of the temperature differences  between opposing hands and feet were "incidental". Stuff him!! I am unsure whether we were given instructions on how to proceed, certainly no hand scribbled notes ones expects old farts to need. I caught the attention of the newer nurse E and queried her about slight leakage and resulting "crusting" around the stoma. She said that was expected due to relative movement between the tubing and the stoma. She inspected the stoma, saying "it was one of the best she had seen"; a relief for me. Yet small benefit for the cost to her Home Care Package of some $700 for the round day trip in the rain.

But backing up a little, she woke early on that Wednesday morning to tell me that she had bad tooth ache and her face was swollen on the RHS. Seems she had been suffering in silence for quite a few days without telling me. Not wishing to re-schedule the Clinic appointment again, I gave her a couple of soluble Panadol. At home again about 1530 I rang a dentist mentioned to me by the Wild Dog driver, so I made an on-line emergency appointment (high tech dentist!) for 1000 the following morning, describing the problem. A call from the dentist's receptionist shortly thereafter recommended beginning antibiotics ASAP. recommending calling the hospital if unable to see our GP. Well our GP's staff were not answering their phone, so I took her to the hospital a little after 1600. The triage nurse saw her about 1630, asking us to wait. Around 1930 I caught that nurse's attention, she saying they were very busy, I saying we will wait until 2000. About 5 minutes later we were called in, her teeth were examined, she was given an antibiotic to take immediately plus a script for a full course of the same. She had had enough, so I did not go to our chemist until early the next morning. Then to the dental appointment at 1000, a quick inspection, a quick X-ray, a quick tug and twist with those large pliers they use and we left poorer by $94 something dollars but the rest of the $355 fee was paid by our favourite private health fund. I enjoy having them pay for something!! Anyway, all is well now and I booked her in for a check up and clean later in the month, since she reacted well to the handling she received.

Before taking her to the hospital at about 1600 Wednesday afternoon I changed the Duodopa cassette and reduced the flow rate from 7.0 to 2.2 which was the night rate as a precaution , not knowing what may happen at the hospital. Considering the day of travel, an abscessed tooth, visits to two hospitals, her leg dyskinesias were much reduced for the whole of Wednesday. Again on Thursday when the tooth was extracted the dyskinesias were mild and I adjusted the flow rate from 7.0 (day) to 2.2  (night) mL/hr at 1710. Considering we had not been given specific directions on Wednesday, on Friday I changed the rate at 1410. Again, minimal dyskinesia. The change was made at 1445 on Saturday, 1305 on Sunday and  at 1415 today Monday.

For the last couple of weeks she wanted to stay up later than 1900 when Wild Dog carers come to put her to bed, perhaps mildly manic, if that is the correct term for seeming a little uptight. Was that due to the 7.0 flow rate from about 0630 to 2000 approximately? With the lower dose rate from early afternoon, ie., 7.0 flow rate from 0630 to about 1400, she is calmer and wishing for bed before 1900. I would expect her to exhibit sluggishness.

Several months ago I bought her several Leggo kits hoping to interest in assembling blocks rather than partially completing then unpicking patch work squares. She was never interested. Perhaps that was because I failed to encourage her. On Saturday I suggested we build an object pictured in one of the booklets supplied with the kits. We made a train engine and a carriage, taking us a couple of hours, it being harder than I expected, a matter of too many small pieces to find. I watched her having difficulties orienting an irregular piece to fit in place, at times she wanted to add unnecessary pieces. On completion I took some photographs of her and the train. Next morning I tempted her to build a racing car as shown in one of the booklets, but no, she wished to sort the blocks into colour groups to be placed into zip lock plastic bags. Later down the street we bought four small sets of drawers in which to store the Leggo blocks. Today, Monday, she has spent some three hours sorting the blocks into drawers  with quite a few blocks to go.

Early last week the Dance for PD DVD's I ordered arrived and since then she has "danced" for an hour  most mornings. Her Surface Pro and 17" monitor remains set up on the over-the-bed table which is now  positioned in front of the sit to stand rails in our lounge room. She has danced along to the demonstrations on each of the three DVD's in the set. She tries her hardest to follow along with the instructor and the Parkies seen in the video, mostly seated for the movements but when the participants are asked to stand, if able, to stand behind their chairs, used for support, she wishes to do likewise, yet is unable to stand well enough and needs to hang on so tightly that most movements are impossible for her. Perhaps my wishful imagination suggests to me that her left foot is becoming free from its rigidity. She often asks how well she is doing; I have to say "Pretty good Dear", trying not to become emotional.  I have taken some pictures of her doing movements; she wants to see them, fortunately I only took stills.  So far she does not look upon the movements as a chore, rather she achieves satisfaction, maybe even pleasure, from trying to follow the arm movements of the instructor; so much better if her legs could follow as well. An hour of movements satisfies her.

Today I contacted the Red Cross Community Visitors Scheme in the hope that she may be visited once a week by a lady with whom she can get along, just chatting, once a week, for an hour. She has so little social contact these days. The other day she played with her mobile, accidentally ringing a friend who once lived here in our village but who thought it better to move to be closer to her sons, except now her husband and both sons have died. So my dear heard all about the church friends the other has, the bus trips gone on, shopping outings and the like. How the conversation ended she was unable to tell me. But I felt depressed.

Now at 2030 on this Monday night she sleeps, a soft snoring.   I feel relief.