Chapter 320 - A Glass Half Empty

Reader you may never notice; my chapter titles are cryptic descriptions of my view of our situation post by post. Mostly the titles reflect a rather depressed outlook, mine more than hers.

Last Thursday we had an appointment with Polly the PD nurse and this time I was hopeful that the Apo pump setting were to be adjusted; infusion rate up, size of bolus down, to provide a stronger continuous dose while allowing smaller, and more frequent, sized bolus shots. when she first began with apomorphine (or Apomine or Apokyn to use the marketing jargon), the original bolus size seemed to have negligible effect on her until several weeks ago she was reacting badly to them, to the extent that she refused to try a bolus to relieve stiffness and rigidity because the side effects of excessive tremor, muscle pain in her legs, tingling sensations that began in her toes then crept up her legs to the anal-genital area inducing feelings that she needed to use her bowels amongst other things. All this was torture to her.

So Polly the PD nurse asked me to raise the Apomine to 7ml (was 6ml) with 13ml saline (had been 14ml) for the 24 hours beginning Friday 29th November and and she adjusted the pump settings appropriately and to allow for 10 (I think) smaller bolus doses. Which meant the infusion rate was low for the remainder of Thursday since we had not come supplied with Apomine other than was already in the syringe on the pump.

Then we were told that the Considerate Neuro had discharged her back to the private practice neuro that had referred her in the first place. No reason was given and perhaps I was too confused to ask why, except to ask about the appointment letter that the hospital machinery had sent  specifying an appointment with the Considerate Neuro on 19th December. "That will be cancelled but you will still see me on that day" said Polly the PD nurse. Thank goodness for that I thought.

During the long walk back to the car park she needed to sit and rest 3 times. Along the way she sadly commented that "another one (neuro) has given up on me."

Next day a family member rang, enquiring about visiting their aunt prior to Xmas. She was told we could not come. In talking about not very much she mentioned that she had been sewing, making some small quilts for the stall at Respite. In closing the call, the other one said "Well, if you're sewing you can't be too bad." DO YOU PEOPLE UNDERSTAND HOW CRUEL YOU ARE?? There is little she can do except solve puzzles in her puzzle magazines and persevere with sewing and infrequently a little machine embroidery in the time she has available to use her hands? And even then, she takes much longer to complete a sewing task than she once did, her hands and fingers are slow and she often has to pull stitching apart because of errors made, repeatedly. She can't shop any more on her own and even when I assist her she quite quickly needs to sit down, She can't get out of the car (old or new) on her own, she is only able to spend short periods in the kitchen, she is unable to sweep or vacuum, she is unable to hang clothes on the line, she can't mingle in social groups, she has to avoid crowded shops, restaurants, homes, theatres, your houses are fearful places for her (they were built with steps, narrow hallways, narrow doors, sloping driveways, cramped bathrooms etc etc), she has to move around her own house shuffling behind her walker, she frequenting calls for help to sit on the toilet and to get off it requiring help to pull up her pants, very rarely can she stand under the shower but needs to sit, often needing help to wash and dry her body, she is unable to walk around shopping centres without the help of her collapsible walker/wheelchair on which she often needs to sit AND she has minimal contact with her grandchildren. How about needing a bidet because she has great difficulty wiping her bum? She must use  "disabled" public toilets because she needs my assistance so when we travel fast food outlets are sort after but not necessarily for the junk food. She has been told that in her present condition not to attend the weekly "Falls Group" at the local hospital. Her Tuesday Respite Group are becoming concerned about her, although many of her fellow attendees have more serious difficulties. ALL THESE ACTIVITIES YOU TAKE FOR GRANTED AND PROBABLY WISH TO AVOID DOING SOME OF THEM BECAUSE MANY ARE DRUDGERY.

She had been referred to the Considerate Neuro at Hot Air City Hospital for his expertise with apomorphine. From March this year when she first attended Hot Air City Hospital her conventional medications were increased with Comtan 200mg 3 times per day and then raising Sifrol by 0.5mg to the maximum daily amount of 1.5mg 3 times per day, then after she had agreed to an apomorphine challenge and then commencing infusion, requested that she cancel her 10am meds (350mg L-dopa equivalent) and adjust the other medications times across the day. Elimination of her 10am meds caused her excessive stiffness and freezing and she was hungry waiting for her next dose well before the next dose was due now that they were 6 hours apart (had been 4 hourly). A short while later we reinstated  the 10am meds and began removing Comtan from her regime. Did we have "approval" to do this? If I remember correctly, the Considerate Neuro was away so I advised the system by email. The last appointment she had with him was a rushed one because the day's appointments were running late and he needed to be somewhere else within 15 minutes or so; a non-useful meeting for us.

At a subsequent appointment I learned that the professionals regarded Comtan as increasing the effective level of L-dopa doses by some 33% when they calculated the effective dose rate of a number of L-dopa and agonist medications taken by a patient. And Sifrol has an equivalence of 100. Way back  in March this year at her first appointment with Polly the PD nurse she was told that her L-dopa intake was very high (by my calculations 1800mg), yet Comtan was added and Sifrol was increased before introducing her to apomorphine. At that time, by my calculations, she is taking the equivalent of 1650mg x 1.33 (Comtan effect) of L-dopa, i.e., 2195mg!. Admittedly, she was told to remove the 10am meds (350mg) which we had to countermand yet no other adjustments have been advised. I calculate her current L-dopa equivalent intake, including apomorphine, is now 1700mg.

Enough confusing arithmetic. Last Thursday I checked that the new chair ordered for her has not yet arrived. After the hospital appointment, I drove to the physio place that offers LSVT BIG therapy even though they had not responded to my email. I made an appointment  for a "taster" session of the therapy, something I thought a good idea in case she is unable to cope with the exercise.

She avoided taking any bolus doses during Thursday and through Friday and Saturday. Her fear of excessive tingling and pain from her toes to her bum area was too great to experiment with the smaller bolus doses. Saturday was a reasonably relaxed day, needing to be rescued off the loo only twice. I applied a just delivered vibrator to her feet and that may have helped her. However, at 1.15am this morning she woke me while she was perched on the commode; she was too frozen to return to bed and wondered whether she should try a bolus; I agreed. What follows are my notes following the bolus:

0150 Pump reading from 15.21 to 14.57 hours remaining (0.64). Fine tremor in feet.
0152 No changes.
0153 Sharp tingle in left toes
0154 Sharp tingle in right toes as well. Tight feeling left heel.
0155 Pressure in anal area.
0157 Uncomfortable on the commode so back into bed.
0200 Tremors up both legs, tingling in feet continues. Yawning.
0201 Feet "freeing up". More yawning.
0202 No visible tremor of bed clothes.
0203 Asleep.
0213 Woken by strong foot tremors
0214 Tingling up legs to anal area.
0215 Calming down
0216 Tremors ceased, tingling lessening to feet only. Yawning.
0219 Asleep again.
0313 Shouting, talking in sleep for a few seconds, she did not wake.
0525 Needed assistance onto the commode.
0605 Commode again.
0645 Onto commode again without assistance.

After this I soundly slept while she rose made her bed and emptied the commode.

At 9am I rose, finding her in her recliner in the TV room. She was feeling stiff and OFF so thought she would have another bolus. So the story continues while she is in her recliner with her feet raised.

0905 Pump reading from 07.44 to 07.18 (0.59? I must have misread the numbers) foot tremors and toes tingles.
0906 left foot turning.
0908 Soles of feet tingling.
0909 Left big toe strong tingling, right toe almost as much.
0910 Calves begin to tingle, both feet tingling all along to heels.
0911 tremor only in left foot.
0912 Both feet tremor free, then right began again.
0913 Right big toe painful.
0914 Left foot still, right foot tremors.
0915 No feet tremors, although right tingles while left is stiff, and calves tingling.
0917 Both feet tremor, left toes want to point downwards but is stiff.
0918 She wriggles left foot to ease stiffness.
0919 Raised knees to ease tremor.
0920 Yawning , slight tremor right foot.
0924 Yawning, strong tremors in right foot, left foot tight, then right foot is tight.
0925 Strong tremors both feet, deep yawns. I think her speech is clearer.
0930 Both feet very painful.
0931 Feels funny in the tummy.
0933 I applied the vibrator to her feet.
0935 Both feet still, but both sore behind the toes.
0936 Slight tremor in left foot, tingling feels like ants in her feet.
0937 Wild tremors in both feet.
1050 Pump off 05:33, infusion needle removed, dark blood from infusion point, covered with small band aid. Showered.
1115 Pump on 31.27
11.30 To the Club for lunch.

We enjoyed a light lunch.

12.39pm she decided she needed a bolus. Pump readings 30.04 to 29.40 (0.64)
13.03 Hot & sweaty, when her feet touched the table leg pains shot up her legs.
14.05 Usual meds.
14.30 to 15.00 She was unable to stand.
15.15 She was unable to place weight onto her feet to stand, was unable to place "nose over toes", pushed the table away, wanted something to grasp to pull herself up, my arm was not good enough to assist her onto the seat of her walker, even tough it was right beside her chair. Became bothered that there was nothing beneath the chair seat to support her (there were steel bars), wanted me to bring the plastic sheeting she uses on the car seat so she could slide off the chair, I became very angry, threatening to call the ambulance to cart her off to hospital (I am sure this is the first time her disability has angered me). Eventually, with our left arms linked I was able to lift and swing her onto her walker seat. She had no difficulty getting into the car or out of it once we arrived home. Any thought of grocery shopping was abandoned.

Since arriving home (now 20.36) she is in reasonably active and now after we ate she has returned to some sewing. ..... I spoke too soon, she just called on the CB for help. She has taken herself to the bedroom, changed for bed and is unable to decide what to do. Her feet and legs are troubling her; she ponders whether to have a bolus, decides against the pain and tingling. I make no comment. We decide she may be better off in the bedroom, either in bed or on the chair. She decides the wheel chair may be better in case she needs wheeling to the loo. When I return with the wheel chair she is unsure why she thought it a good idea until I remind her. I set up the new DVD "Call the Midwife" for her to watch while she counts out her pills for tomorrow.

So a glass half full or half empty? A project to improve her quality of life with apomorphine half complete or hardly begun?