Chapter 385 - A $300 Saving

Yes, our monthly saving now that she is on DuoDopa is about $300. Why? We no longer need a kit of infusion needles, syringes and saline, and no more Opsites to cover the inserted needles. Chemist costs (for we poor aging pensioners) are the same, thank goodness, for Apomorphine and for DuoDopa. She is capable of handling the procedures for operating the DuoDopa pump, although up till now I have always been present for any changes but that will change.

At first she responded well to DuoDopa but not now. She is unable to walk; perhaps I discourage her for fear of falling; each afternoon her legs become very dyskinetic, foot tingling and leg burning are nearly always present, she experiences "breathing difficulties" tending toward panic attacks each day when she needs more fluids, water, fruit juice or soft drinks. Her 3 ball breathing exerciser forces her to breathe deeply, reducing the feeling of suffocation.

Her blood pressure can be either high or low as a "breathing difficulty" begins. At 1515 Thursday 14th after coming home from our PD meeting and lunch at the Club I noted "1515 breathing becoming difficult", then "1545 Cassette changed, onset of panic attack, very out of breath, sucking on ball machine, very dry mouth, needing to drink", then "1600 153/111 70", then "1645 to piddle, feeling cold, needed hoody, head tingles etc., feet mild dyskinesia."

Similarly, on Friday 15th "1630 Changed cassette", "1735 Called me for breathing problems, leg dyskinesia severe, BP 153/83 73" "1805 Quietened but legs still dyskinetic", "1900 Did not eat much of fish or broccoli", "1930 Legs burning", "2045 Stressing, trouble breathing, on loo, into bed", "2130 Easing".

Perhaps I have taken BP readings too late after the "breathing difficulties" commence. Yesterday, Saturday 16th "0849 Left leg burning, not shaky but twisted inwards", "0900 Video of BP reading  94/47/67 sitting and standing when felt need to go backwards so sat again into wheel chair." "1005 BP 116/83/67 (cuff) 120/61/69 (wrist) Feeling slightly breathless.", "1012 Left leg burning, "1050 still feels choked up due to breathing problem." "1140 still feeling the same." "1245 Feeling tired & out of breath, no legs shaking, left foot twisted. BP wrist 92/60/62, cuff 80/44/65.", "1340 Feels exhausted, out of breath.", "1345 Soup and hot chocolate.", "1405 Into bed.", "1450 Asleep." , "1510 Up & about. Pump off to replace cassette.", "1515 Cassette changed & restart, slight headache over right eye. BP cuff 137/59/67 wrist 128/56/56.", "1545 Out of breath, slightly.", 1615 Chest getting tight, ears drumming, pulsating, face feels hot.", "1705 legs dyskinetic.", "1730 Meal.", " 1800 Starting to stress, legs dyskinetic, to loo by self on wheel chair.", "1815 Called me, wheel chaired her to bed," , " 1820 BP 154/78/77 Legs still, breathless." , "1900 Sleeping.", " 2015 "Wheel chaired her to loo.", "2040 Very dyskinetic, back to bed." , "2200 Pump off, cassette disconnected, sleep."

Anyway, yesterday was not a good day for her. She is attempting to remodel a vest bought a few days ago to support the DupDopa pump which is much larger and heavier than the Apomorphine pump. Today is her second day with the task.

Last Wednesday she attended a clinic at West Beer. Another wrist monitor for her tremors is on its way in the post but failed to arrive by Friday.

Last Thursday we attended our Parky Group when a very experienced person from Big Smoke spoke very practically about Parkies and Carers. I learned something I had never heard of before, that Parkies tend to procrastinate when asked questions or following directions or beginning another task before completing the previous one ( this is my understanding of what was said and how my Parkie behaves). This explains why I am often driven to distraction when she drifts from one task to another, forgets to answer questions or only partially. As when I ask about her legs, feet etc and she will reply "OK" or "burning" or "tingling" when I expect her to answer with "Left leg burning, toes of right foot tingling" and suchlike. I must be patient in future. And anyway, what use are these notes I make?

Next post I must note the DuoDopa pump settings.

Chapter 384 - A Holiday Longer Than Expected

She was not discharged on Monday 4th May but on Wednesday 6th since staff thought she could be better managed in hospital rather than in the hospital's lodge where I was staying. So her time in hospital was from 1600 Wednesday 22 April to 1230 Wednesday 6th May.

Perhaps the "fall" (described below) she had on Saturday 2nd May had something to do with delaying her discharge. That morning her mobility was very poor. Three people were required to transfer her from her walker (her blue one taken into hospital to assist her) to the shower chair at approximately 9AM. When I returned at 0945 from some breakfast in the hospital's food hall I asked her to stand from a chair, using her walker for support; she couldn't.

So I had her take a bolus dose of DuoDopa, after which her legs danced up and down (I have given up attempting to describe what form of movement this may be, e.g., dyskinesia) yet became still when her legs were raised to a horizontal position on a stool.  Lowering her feet to the floor restarted the dancing. Then I lifted her into a standing position for her to push the walker but she managed about 5 metres of shuffling before having to sit on the walker. A nurse took her blood pressure, slightly elevated. I had her take another bolus at 1030; legs continued dancing and her stomach was churning. A few minutes later her legs "scissored" back and forth, ankles tightened and toes tingled. By 1100 she was still unable to stand so I wheeled her to the toilet. On return from the toilet she was sweating badly. About 1110 I had her take another bolus and within 10 minutes her left leg was burning and both feet were turning inwards, her legs felt stiff up to the knees, toes were hurting, tingling in both feet and she felt ill, yet she was still unable to stand. Overdosing is not the way to encourage her to stand, extra bolus doses need to be given cautiously. While I was away getting cash from an ATM her feet had ceased tingling and she had transferred herself from the walker onto a bed side chair.

At 1250 she decided she needed to walk (staff advised her to walk as much as possible). There are chairs for visitors next to the lifts on her floor, some 60-70 metres away. She pushed her walker quite easily until we were at the end of the line of chairs, when she said "I'm going", whereupon she slowly sank to the floor, not falling forwards, backwards nor to either side, neither did she reach out to me or to the walker in order to save herself. She simply crumpled to the floor. Immediately two burly visitors jumped from nearby seats eager to help a lady in distress. I told them not to touch her as I looked about for something for her to kneel upon as I began to raise her. My intentions were smothered by the attention of at least 6 nurses, one with a wheeled blood pressure machine, who helped her onto the seat of her walker. Lots of questions were asked before a nurse wheeled her back to her ward. Then a doctor appeared at her bedside to ask more questions.

This was only the second time that I have viewed her falling; at other times I have been in another room or in a different direction. She collapses rather than falls, which may be the reason she has not injured herself by striking furniture. Except her very first fall off the toilet many years ago when a ligament was torn in her left leg.

Next day, Sunday, I arrived at 0830 at her bedside to find her giving herself a bolus dose before pushing the walker to the toilet, then into and out of the shower room, all without assistance. I don't know what the difference was between Saturday and Sunday mornings to give such improvement, yet even so, by 0940 her right foot was dystonic, both feet tingled, a slight headache on her right temple and she had difficulty doing a sit to stand. A church volunteer wheel chaired her down to the chapel, shouted us some coffees then brought her back to the ward. For the remainder of the day she needed assistance for any transfers and she sweated so much her top needed replacement.

Her condition remained much the same, some days/hours good, others less than desirable until discharge on Wednesday on Wednesday 6th May at about 1230. It was intended I collect a script full (56 cassettes I presume) plus ice from the hospital pharmacy to take home but I was not thinking to well, eager to escape from the hospital environment, having caught a cold a few days previously. I was given 14 cassettes from the hospital ward, enough supply for the coming week. I replaced the cassette in use a little after 3PM 3/4 of our way home. I gave the script for a month's supply of DuoDopa cassettes to our friendly chemist as soon as we got to town. Thus I was able to collect 8 packs of 7 cassettes from the chemist of Friday morning early. He was eager to empty his fridge of the boxes for obvious reasons. Later that day I bought a 35 litre 12V/240V car fridge (peltier device type) to store the DuoDopa, for, you see, the stuff needs to be kept at a temperature between 2-8 degrees C and must be kept out of the light. I had not appreciated these environmental restrictions, meaning wherever we are we need to carry refrigeration with us should we need to be away from home between 6-7 AM when the first cassette of the day is fitted, around 3PM when the second cassette is fitted, then perhaps around 10PM as well should it be decided she has continuous 24/7 medication. A 35 litre fridge is rather large; fortunately, we have a very small car fridge that she won in a raffle some 30 years ago, and still in working condition.

This morning I re-read the nurse prepared instructions for the DuoDopa pump to discover that the "Early Morning" dose button, used to initiate a surge of medication when the pump/cassette are first attached for the day was only being pressed once rather than being pressed twice so she was denied this higher bolus dose each morning thus giving her a slower start to each day since we have been home. Shit!!

I could transcribe more of my scribbled notes; but why be boring?

So our lives roll along, slightly improved but hoping for better outcomes.

Chapter 383 - In a Bog

The time is now 0310; I woke perhaps an hour ago, unable to return to sleep I decided to post about her introduction to Duodopa.

Light rain fell as we left home about 1130 on Monday 20th April. By the time we reached the southern edge of Big Smoke, about where the highway widens to 4 lanes each way the lane lines were almost impossible to see through rain and spray. We had stopped for my comfort, not hers, at that trashy rest stop where the loos are still in portable cabins not disability friendly, and had a little to eat from what she had packed. She was stressed and in need of a comfort stop on the last leg of the trip so I stopped at a MacDonalds and wheel chaired her through the rain. We remained there for quite some time hoping for the rain to ease, it didn't.

Arriving at the motel near West Beer hospital about 1515 we found the Disabled room I had booked to be very "wheel chair" unfriendly. There was insufficient room for me to walk between wheel chair and the twin beds, but that was intended only for the first night because she was intended to be in a hospital bed the next night while I remained at the motel in a conventional room.

On Tuesday she was fitted with a nasal tube and then remain in hospital. Unfortunately, a bed was unavailable for her, and since there was no disabled room available at the motel, a night at the Lodge in the hospital grounds was organised. I had avoided booking in there because the amenities were communal and down the hall. That evening, having walked back in the rain to the motel (where I left the car) for some clothing, I became lost amongst hospital buildings and multi-story car parks for almost an hour in the rain.

I checked out of the $170 per night motel into the hospital's $43 per night lodge where I have remained. I was given a car pass to enter the hospital where parking is at a premium. A bed became available late afternoon for her.

So it was Thursday 0600 before she was introduced to Duodopa after all other meds were ceased, except the Deralin, the blood pressure pill Dr D, years ago, had introduced her to for "hand tremors" and which no doctor (including neuros) had had the courage to have her discontinue, although puzzled about it. I suspect they all assumed she was taking it for blood pressure reasons.

She is given two Duodopa cartridges a day at 0600 and 1500 and the pump is detached at 2200. A Sinemet CR 200/50 carries her through the night. We received instruction on a demonstration Duodopa pump. I was very pleased to see her walking, pushing her walker along the hospital corridors.

Friday morning she reported seeing a crowd of foreign nationals in bright clothing during the night, seemingly triggered by one or two visiting the patient in the adjacent bed. Also she had some messy bowel motions which later caused her to be examined for "muscle tone" in that area. She was able to push her walker all the way down to the food hall of the hospital. A sister and husband visited her at lunch time.

More loose bowel events on Saturday. Her BP was over 180 today after reducing Deralin from 5 to 4 tablets. Although her feet were not painful to touch, tingling has returned. In early evening, after visiting friends, I found her in bed, rather than sitting in a chair.

On Sunday I saw her early in the morning before spending the day with our son and family. When I returned in late afternoon she seemed "better".

Then on Monday I walked to the private hospital to get a CD copy of the second MRI scans left behind at the neuro's last October. Around lunch time she pushed her walker to the hospital lifts and back. A little after 1400 she was unable to rise from a chair to go to the loo.

Tuesday 0900 she pushed her walker some 4 times around the ward before her left foot became noticeably twisted and a fall looked imminent. At 1030 she walked to and from the shower so the Duodopa was off for 1/2 an hour. At 1130 she felt shaky, her knees wobbled, both feet tingled and her stomach was "churned". She pushed her walker around the nurse's station, needing to sit part way around then returned to her bedside chair. Her left knee burned and her toes were stinging. Another walk at 1250, nearly toppling backwards as she began sitting in a chair. At 1500 J had her replace the Duodopa cartridge followed by a walk around the nurse's station after which I rubbed behind her left knee which was painful.

At 0815 Wednesday a cannula was inserted in her arm in preparation for the PEG tube operation at 1100. At 1230 J rang me that the procedure had gone well. When I saw her at 1350 back in the ward she sneezed a couple of times. By 1430 she had a slight headache. At 1615 she went to the loo, transported on her walker. She was asleep by 1715 when a meal was delivered. She would normally be discharged on Friday following the fitting of the PEG but Dr F thought it best for her to remain over the weekend for further Duodopa flow adjustments. I was quite happy for her to extend her hospital stay, since, in my opinion, after an initial improvement in her symptoms she was deteriorating. At this point she has been on Duodopa for a week.

When I saw her at 0800 on Thursday she was dozing, dreamy, after not sleeping until 0400. at times her feet were rotating. Pushing her walker to the lifts at 1125 resulted in burning behind her left knee. At 1150 M. ran through operations on the pump, she is to handle the pump as much as possible, stopping and starting, changing the cassette, flushing the tubing. At 1500 she r\took herself to the loo but a nurse had to help her out. She changed the Duodopa cassette. Around 1530 she was unable to rise from a chair at the request of M. who then gave her a bolus dose which did not help her stand from the chair. M. showed me how to change the pump settings, then raised the flow from 6.3 to 6.4.

On Friday when I arrived at 0820 the pump was showing the low battery warning so I gave her a bolus and replaced the batteries. At 0840 she was unable to stand from the bed so I took her to the loo on her walker then removed to pump before she showered. Pump back on at 0915. At 0955 her left leg was burning from the big toe up to the knee, the right foot tingled, both legs were stationary but her mouth and chin wobbled. By 1010 her left leg no longer burned but started again by 1016. Her right leg tingling stopped and started at the same times. At 1100 she pushed her walker to the lifts then returned after drinking a bottle of chocolate milk. At 1340 when she wanted the loo I gave her a bolus dose, then both feet tingled before she pushed the walker to the loo but I had to get her onto the walker seat before pushing her back to the bedside where she wished to lay down. Her eyes had rouble focusing, a slight headache, right leg tingled, she said her left leg was "taking leaps" and pulsing but this was not visible to me by sight or touch. Her mouth was dry. She slept. Around 1440 a nurse brought a new cassette  which I fitted at 1500 and a few minutes later a high pressure alarm occurred. While I was trouble shooting the problem she became distressed. I found that the hose clamp on the new cassette was closed, preventing flow. Just as I had the pump working again, J appeared so I suggested perhaps that the clamp had been a problem solving exercise for us; she assured me that was not the case, and gave another bolus.  By 1530 both legs were burning from feet to knees. She pushed her walker to the loo at 1600 where I changed her pants and helped her into her dressing gown. After snoozing in a chair for a while she said her left leg pulsated, although I could not see it. She said tilting her head towards the right causes her vision to be fuzzy which lessens tilting her head to the left. Her head feels heavy when tilting it forwards, lighter going forwards.

We expect her to be discharged on Monday but we will stay in the Lodge over Tuesday because she has to attend a clinic to check on the PEG tube Wednesday morning. Also she has not yet had a scan to ensure that the tube is positioned correctly.

Just now I wonder whether Duodopa is successful for her.

Before she was admitted to West Beer my right hip had stabbing pains, almost causing me to fall several times; since I have not been physically assisting her that pain has mostly eased, so I presume incorrectly helping her to transfer between wheel chair and loo or bed was causing me serious problems.