Chapter 327 - A Lull in Proceedings

She is sitting at her sewing machine at the kitchen table repairing a pair of slacks bought some time ago at her favourite clothing shop. It seems there was no zip in it or some such problem. I assume she wishes to wear the slacks to the lunch today at our hall, celebrating the European pillage of this country. I wanted her to do some BIG exercising but she is hell bent on modifying the slacks; why the other 30 or so pairs are unfit to wear is unknown.

Her dystonias, dyskinesias and whatever other sources of pain continue to diminish this week. Although yesterday her left hip displayed similarities to the bursitis of a year or so ago, with pain running down her left leg. So I slapped some Tiger Balm ointment on the hip and vibrated the hip with the large vibrator bought recently. The pain has eased.

Another four trips to Hot Air City for BIG exercise sessions. On Thursday Physio D, who takes her once each week, intended to do a time trial of her walking along the footpath outside the building. I was left behind to hold the stop watch. Soon after disappearing from view they returned, Physio D walking backwards leading her by the hands. She was shuffling/stumbling along hardly able to reach the doorway. Imagine my surprise a few minutes later when Physio D had her striding (well almost) around the gym room!!

A real time interruption; she called me to help her move from the chair at the kitchen table to her recliner where she says she will find hand sewing easier on her slacks; she was unable to rise from the chair and walk the few steps on her own - 15 minutes to her 10am meds.

While exercising BIG she finds her left leg calf becomes hot, her foot spongy, so briefly needs to rest. I notice that she walks more boldly, stepping higher. The hardest exercise for her is "Sit to Stand" for which she needs to rise from a chair without pulling or pushing herself with her hands, and it frustrates her. She is expected to do a number of repetitions of BIG exercise each day at home; unfortunately many are skipped.

 Following a visit to Polly the PD Nurse on Thursday, her Apo has been increased from 7.0ml to 7.5ml per day. Polly thinks we may be reaching the optimum; a damned slow process. So beginning Friday I increased the dose. Later that day her lower left leg was slightly itchy. Yesterday much worse. By the end of Saturday the leg was fiery red, not that she had been scratching, just rubbing it with a dampened face washer, in my opinion highly abrasive. Although the itching began on Friday, I suspect the Tiger Balm has aggravated the rash and redness which is also on her left hip where I applied the Tiger Balm with the vibrator which transferred some of the Balm to the left leg; however there is no sign of redness on her right leg where I also vibrated with a Balm contaminated device. Anyway, from past experience, I suspect that the Apo initiates a short period of itching on her left calf.

While waiting for Polly in the reception room at the hospital we bumped into the couple we visited before she began with the Apo Pump; it seems that PWP is not happy with Apo and his dose rate is being reduced, partly due to severe hallucinations, although it is unclear what other meds he takes to complicate his problems. My PWP is doing better.

Part of the BIG programme is to complete everyday activities, thinking big, exaggerating movements to overcome the tendency of PWP's to use diminished movements. So Friday morning she decided to hang some washing; I was called quite soon because her left leg "was about to go". Sometime on Friday I remember her commenting that she had bumped the infusion point with an object, exactly what neither of us can remember. Then on going to bed she asked me to inspect the infusion point; all around it, beneath the clear op-site covering was a red "bruise", no blood evident on the surface. The site was close to an area on her right side lower abdomen which had bruised badly some weeks ago; rather than relocate the infusion we decided to leave it in position. Next morning the infusion site bled quite a lot, requiring a small band-aid. The bruised area had not increased in size but was slightly tender. Today, Sunday, the bruise has darkened quite a lot and is not tender to the touch. An area to be avoided for future infusions. There had been no pain or stinging when I applied that infusion; I always ask and immediately relocate the position if she says there was stinging or pain, possibly twice that I have done so.

On Saturday I intended to take her to see "The Book Thief" but the session times, her med times, her OFFness were not conducive to a pleasant outing, especially to see a "dark" movie. So instead we went super market shopping about 7pm. She was happy to remain in the car except I talked her into pushing her walker. The excursion began well. She reached the super market without trouble, walking reasonably well. While I selected some fruit into bags she meandered from my view toward the salad greens area. Then I met the girl who home visits to cut our hair; the girl said my PWP had fallen into the salad items. When I found her, looking slightly sheepish, she said she had not actually fallen but rather sat down onto the salad area. A fall by another name. After that she continued with me for a row or two, then skidded along while seated on the walker (I was pushing a trolley) until I had her wait near the cash registers.

She has now finished repairing the slacks; spilled a bottle of buttons, has the slacks on. Maybe some BIG exercises then we will go to lunch.

Chapter 326 - Commuting

Busy this week commuting to and from Hot Air City particularly for her appointments with Neurospace for LSVT BIG training. (I'm sure they won't mind my spelling the name in "clear") Although on Thursday an appointment with the Private Neurologist, who hasn't seen her in about a year, due to the referral to the Considerate Neuro & Polly the PD Nurse at Hot Air City Hospital. The Private Neuro thought she showed improvement. He was concerned about the tingles and pain in her feet, the lack of temperature regulation in her feet, referring to the symptoms as neuropathy and decided he should do some nerve conduction tests on her feet at her next visit in 3 months time. So obviously the symptoms are not serious enough to require immediate attention.

When we described her "double vision" (Have I mentioned this here? It has seemed only a matter of needing a new prescription for glasses until I asked her to describe the symptoms in detail) the Private Neuro quickly checked whether Apomine may have such a side effect; but not so. In quizzing her, I think she sees a secondary image displaced vertically below, say, a line of text on a screen but the effect may not be as evident for images of horizontal bars. The secondary image is not displaced horizontally. The effect is seen with either eye covered or neither covered. Yet she continues to read a 500+ page Penny Dreadful of fine print, presumably with little difficulty, even in poor light. Her view of an Amsler grid sounds OK to me. She has had difficulty threading needles for hand sewing, so after a helpful therapist mentioned needles with slotted eyes I bought her a packet. She finds them very helpful, although this morning she told me that she saw two threads of cotton and two needles as she sewed some bright blue fabric. I made an appointment for her to see our local optometrist next Wednesday. I am concerned, apart from any thing else, that her vision may contribute badly to her walking stability.

She has taken to the LSVT BIG sessions perhaps not with gusto, but her normal movements have improved, becoming larger, especially her foot steps. She tires easily, especially her left leg, but the physios take good care that she doesn't fall. Under their guidance, she has now walked from the buildings out to the car WITHOUT relying on her walker (I am relegated to pushing it). She is finding getting into and out of the car easier; some real life difficulties are part of the training regime, even to dressing herself and rolling in bed. I expected her to feel sore and worn out after each session and except for some muscle discomfort in her shoulder area (which may be due to pulling-pushing herself in bed or chairs which is to be discouraged) I don't think she suffers from the sessions. I have downloaded several YouTube video clips to guide her when she performs "homework" sessions. Perhaps she has more confidence during the training sessions; at home she has so far only partly completed the exercises while watching the clips for guidance because her left leg tends to drag and give way. Three weeks each of 4 daily sessions to go.

On Friday we saw the local hospital physio for transfer assistance training. Some additional exercises for her to do, such as ham string stretching, gentle squats and shoulder movements.

I have been puzzled that she performs much better on those days we go out; yet poorly on weekends when we are usually home. Cabin fever? Last Sunday I videoed her every half  hour or so, a burden to both of us, to make another DVD of a "bad day". I didn't get around to compiling the clips into one video with time stamps prior to seeing the Private Neuro and I don't think I will bother now; not even for Polly the PD Nurse, since I am positive there have been improvements in her condition through this week. Last Sunday is history. I am sure the dystonia and dyskenisia in her legs and feet have reduced hopefully due to the small increase from 6.5ml to 7.0ml Apomine. Are we making progress or are we making progress?

Last evening, Saturday, we needed the usual odds and ends from the supermarket so she came with me, deciding to walk with me (this was also a homework exercise from Neurospace) while I spent a few hundred dollars. She quickly felt unstable, sitting on her walker just inside near the bakery area while I grabbed a few vegetables. After that short rest she decided to push the supermarket trolley but that became inconvenient for me pushing her walker and picking items off the shelves. Swapping our vehicles again, we then proceeded around the shop, not bothering to walk the full length of some aisles, then she waited outside while I went through the checkout. She walked all the way back to the car.

Except for last night, I have been sleeping well. So this morning I was somewhat sluggish, not rising soon enough to finish a shower before the Apo pump ran out, beeping all the while. After my shower, as I killed its beeping and removed the infusion needle, she said that a few minutes before, as the Apo pump displayed "End" in its little window she experienced "tingling" in her right hand and fingers, and the feelings had decreased and ceased by the time I removed the infusion needle. I suggested perhaps she had laid on her right arm but she said not so.

This morning, in between OFF periods, some exercises for her and hand sewing.

Chapter 325 - Perhaps a Quiet Week

Perhaps a quiet week because I decided to keep few notes, for doing so depresses me  and possibly irritates her, although she never complains. Today, from 6am I am taking video clips every half hour to send to Polly and perhaps a copy to the Private Neuro with whom she visits next Thursday, now that she is discharged from the Considerate Neuro at the hospital.

She had a referral questionnaire from the Sub-Acute Rehabilitation Unit at the local hospital to be completed by Dr Flower, our current GP last Tuesday. The referral was because in early December the Friendly OT at the local hospital invited her to participate in a live-in respite week or so of physio activities in the new wing of the hospital. What with the holiday season these arrangements proceeded slowly and in the mean time I had organised the LSVT BIG programme for her and that begins seriously tomorrow, Monday. So the rehab session will have to wait at least a month. I think both she and the OT are disappointed that I have managed this in reverse order.

Anyway, we were both saddened to learn that from the end of January Dr Flower, who has young family commitments, will no longer commute from Big Smoke to our town. Dr Flower is the most helpful, thorough and empathetic GP we have ever met.

On Wednesday she had a headache extending from the back of her head to the temples. She hardly ever mentions having headaches.

Most mornings these days she is able to shuffle, after I take down the Apo pump, from the bedroom to her bathroom for a shower, where she sits on a shower chair, and then walks back to the bedroom where I attach the infusion from the Apo pump which I prepare while she showers. On Thursday she seemed unable to "compute" her movements, there were spatial relationship problems, so I wheeled her back to the bedroom on the commode/shower chair, which she has not needed to use very often lately.

On Thursday morning she was sure her bed sloped sideways, toward the side she gets out on. Although the mattress looked reasonably level to me, I place my builders spirit level across the bed, and, yes, there was a slight slope to the side, but as I pointed out to her, only about the width of two fingers, about 3cms, so on Friday morning (Domestic Engineer cleaning lady day) I reversed the mattress. Similarly, on Thursday on our trip to visit Polly the PD Nurse, she felt she was tilting into the centre of the car, and that sensation was alleviated by placing my camera bag beneath her feet. At Polly's direction, the Apomine dose has been increased by 0.5ml to 7.0ml plus 13ml of saline in the 20ml syringe, beginning from Friday 10th January.

Also on Thursday, after a sandwich at the hospital we drove over to the LSVT BIG place for an official assessment, which consisted of the usual PD checklist of questions for whatever-it's-called PD scale. She was unable to stand from a seated position without using her arms and a couple of other tests will be made on Monday when the first session of the programme occurs. She was given instruction on a BIG technique to rise from a chair. Although able to do this at the BIG centre she seems to have lost the technique once home and I hesitate to show her since I don't want her to over balance while I can't give proper instruction.

I was puzzled on Thursday that for someone who has nocturia problems and urgency incontinence that she is able to hold her "own" so very well during the day, well, on Thursday anyway, and I don't think she drank less fluid than she normally does. We left home around 9.30am, saw Polly at 11.30am, then she did not need the loo until 3.30pm when we entered the LSVT BIG place, whereas, being an old man I suppose, I made two comfort stops during that period.

To my mind, Friday was a good day; her lady hair dresser who makes house calls came to cut her hair, followed by mine including my face (these days that saves me leaving her on her own or having my hair cut on respite days by less than competent women at my usual barbers); then after lunch the house was cleaned.

Then Saturday turned out to be crap. I scribbled 4 pages of notes that I did not intend to type here but what the heck!

0739 Pump Off 00:08
0806 Pump On 24:05
0813 Dressed self [usually needs help]
0830 I rubbed Tiger Balm Oil on her toes & feet which were dystonic while feet/legs dyskinetic (she does not think the two can happen together; I'm sure they can)
0900 Passive pedalling with power on [I refer to this as "passive pedalling"] for about 1/2 hour until her left foot would not remain on the pedal.
0945 I began playing a CD of soothing piano  music [Debussy "Images for Piano] but she complained that the music made her shiver & tremble, maybe because she was dozing off on her recliner when her familiar "walking over my grave" sensations occur. I lowered the volume then the CD finished playing and I did not play anything else.
1000 Meds
1015 Seated in the laundry, she loaded the washing machine {I get to hang stuff on the line]
1045 Found her sitting in laundry crying, unable to rise off chair, severe dystonia of feet and toes burning, leg pains, dyskinesia in legs, and in right hand. She thinks she is ON but confuses ON/OFF with pain and discomfort of dystonia. Says bands around feet are getting tighter, crying in pain.Ants crawling up insides of legs to bum but this is not painful. While walking behind her shuffling from laundry to her recliner, there was a rapid jerkiness overlayed on the motion of her hips.Unexpected touching/bumping of her toes by me or an object causes pain, as does the expectation of such touching.
1100 Dystonia in right hand, fingers stiffen and stretch.
1105 She is relaxing, very little dystonia in left leg plus fingers of both hands, she is going to sleep.
1106 eyes closed, looks very relaxed, no movement in hands or legs, breathing slowly.
1109 Woke saying I must have been asleep." Slight movement in left foot, says "it's tight", feels as if she has "a shoe on".
1110 Sweaty, switched fan on. Sole of left foot burning, rubbing it for relief.
1130 Reading a book.
1230 Dyskinesia of feet,, toes dystonic, bands on feet, big toes painful.
1240 I massged her feet with Tiger Balm oil.
1420 She needed help to loo for poo and to pull her pants down.
1455 Needed help off loo and to pull pants up, helped her shuffle back to recliner.
1555 Called for help to loo, feet and hands dyskinetic, then help off loo and pull up pants then back to the recliner. Fan switched on.
1630 Vigorous dyskinesia both legs, toes painful, stomach churned up, Apo pump feels heavy on her chest.
1735 I rubbed her feet with Ice Gel.
1638 Using passive pedals.
1650 Stopped pedalling, headache.
1655 Asleep on recliner.
1704 Legs almost still, chin wobbling.
1710 Pedalling again.
1800 rescued her off loo and pulled her pants up.
1805 Back on recliner, burning on tops of feet. Both legs dyskinetic.
1845 Panamax for leg pain, badly dyskinetic, pedalling again.

Some time between 2000 & 2100 we both went to bed. Stuffed.

Today, Saturday is much the same except that I'm not taking notes but making video clips each half hour  except for loo activities.

Chapter 324 - Better or Worse Year Ahead?

My answer to my chapter title is simply "I  cannot expect the future to be any better than our recent past". Our social life, never of much consequence anyway, is negligible, no movies, no shopping together (if such can be called "social"), doubtful about having lunches at the Club, no holidays from retirement, minimal visits to/from rellies and friends (who are also deteriorating). Such is life sliding down the slope. We were in bed asleep well before any New Year festivities occurred. What, me depressed?

A couple of minutes ago she called me on the CB to say she will take her 2pm meds at 1:45pm; I went out to say "Take them now, 25 minutes early, what the hell." Not good to change the timing. She has been having an OFF morning, possibly triggered by an impromptu experiment I performed this morning. Polly the PD Nurse will add this to her long list of cruelties I inflict upon my PWP.

Experience has shown us that the Apo pump needs to be restarted with a new full syringe as soon as possible after 8am so that she can have breakfast, at the moment two slices of buttered toast, honey and a banana plus a glass of grape juice with a teaspoon of Metamucil well before her 10am meds.

This morning the Apo pump with 10 minutes to run was shutdown at a little after 8am, then after a shower and partly dressing I reattached the pump with a full syringe primed for 24:05 hours of infusion. Within several seconds of the pump being turned on at 0844, she experienced tingles in her right big toe, then her left big toe. Since anything I have read about Apomorphine says the PWP experiences the commencement of ON time about 20 minutes minimum, I wonder why she often experiences neuropathy effects in her feet so quickly. What follows are my scribbled notes describing what she experienced.

0847 Banding in left foot, then into right foot while laying in bed.
0848 She dropped her legs over the side of the bed (to complete dressing) and tingling immediately extended to her ankles.
0849 Ice Gel applied to her calves to ease pains which were present before the pump was started.
0853 The preceding is "normal". Here I suggested an experiment. The Apo pump was turned off reading 23:57. Within 30 seconds she experienced tightness around her ankles, toes began bending up (dystonia?).
0854 Tingling more, more tightening, then right foot tingling lessened.
0855 Toes "spreading", cramps in both feet.
0856 Tingling remains across toes only, feet kicking mildly (dyskinesia?), not tremor.
0857 Banding still there, dyskinesia in loer legs, tingling still in toes.
0858 Head wobbling, other symptoms same, feeling very uncomfortable, Apo pump switched on again reading 23:57.
0859 Dyskinesia of lower legs, tingling in toes, ball of foot.
0900 Dyskinesia in legs, tongue sounded thick when she spoke, tingling in heels and toes.
0901 Had her lay down on the bed again, breathing heavily, becoming distressed.
0902 Tingling from toes to bum.
0903 Mouth dry, sipped water.
0904 Relaxing, breathing normal, tingling gone from bum but still in toes and ankles, only slight banding of feet, big toes tight, dyskinesia mild.
0906 Soles of feet gone tight.
0910 All quiet, settled down lying on bed, no tremor or dyskinesia, except index finger and thumb of left hand flexing, face relaxed.
0912 Left foot tightening again.
0913 Finished dressing before too OFF to do so.

After taking 2pm meds 25 minutes early, she slept from approximately 13:45 to 14:15, calling me a few minutes later to help her adjust her recliner and a pillow, the suggested her feet be massaged, which I obliged with Ice Gel; horrible stuff, I wonder whether ass's milk is available?

Recently she has been saying the skin on her feet feels as if it is peeling off. At other times she describes her feet as being "large lumps", or numb, or without feeling, or she yelps with pain if her toes are touched. When pushing her trolley her shuffling gait responds positively to my saying loudly "BIG STEPS" which may suggest some of the LSVT BIG programme will be helpful.

In between Xmas and new year we had a visit from an ACAT lady who assessed her for full residential care for when the proverbial bus finds me. She has an appointment to see Dr Flower on Tuesday to complete a referral questionnaire for her to enter the local hospital system for rehabilitation treatment; exactly what that entails we are unsure about, questions to ask such as "can the patient self medicate" amongst other matters. Next Thursday a formal assessment for her to undertake the LSVT BIG programme.

Strange behaviour on Friday last at 10:30. She called me on the CB, stressed, wanting the loo for a bowel action. She wanted to hand me a pair of scissors with which to cut off her slacks which she was sure were too tight to be pulled down quickly once she got to the loo. I checked to find the waist band no tighter, the cords undone, as when I helped her into them that morning. I had to belt assist her into the wheel chair, then onto the loo, for she was unable to stand by herself. Surprisingly, she got off the loo by means of the fireman's pole, pulled up her pants then sat in the wheel chair without assistance. I then wheeled her out to her recliner.