Chapter 352 - Apo Pump Problems and Strange Feet

From around 1430 last Sunday our newer Apo pump, the one I labelled "Pump 2" began beeping and displaying OCCL errors; that means there is an obstruction somewhere between the syringe and the infusion needle. Although the pump could be restarted each time it beeped and displayed the error I decided to replace the infusion needle because there was a trace of blood in the tubing near the needle end. There were no further errors overnight. However, this little drama made her forget to take her 1400 meds; took them at 1530. By 1600 she was very shaky and cold, needing her poncho, then needed the wheelchair to the loo. Later, after I brought her back to her recliner, I found her asleep.

Then Monday morning after Pump 2 was routinely swapped with Pump 1 and a new syringe of Apo juice, Pump 2 began beeping while it was in reset mode retracting its piston. An Error 4 this time indicating an obstruction behind the piston, although nothing was obvious. Pump 2 could not be started until a master rest was done by removing and reseating the battery. Once the piston was fully retracted I replaced the battery anyway. On the following alternate days when Pump 2 has been in use there have been no further problems with it. I felt justified in not attending my Mother's funeral in Cane Toad Country after having 2 failures from the one pump.

Tuesday was a reasonable day for her at Wild Dog respite except that she held her own until returning home because the toilet doors and the layout inside frighten her. At home shortly after 4pm she was squeamish in the tummy, both feet were very stiff, dull head ache and her eyesight was dreadful then she couldn't remain awake. At 1725 she complained of a pain near yesterday's infusion site; shame to say that I had omitted to remove  the infusion needle from the day before early on Tuesday (very slack of me). My procedure is to cut the hose near the needle then dispose of it in a sharps box. She was feeling cold even with a cardigan and the room heater on. Several trips to the loo required the wheel chair, then to the bedroom, then back to the loo for more poo then into bed at 1935, then wanted to sit on the commode at 1945, sitting in wheel chair at 2000 but back to the loo to deposit some small marbles 3/4 hour later. By 2115 I had fitted the new style midnight bloomers on her and she was in bed.

While enjoying a long shower Wednesday morning an idea popped into my mind; some months ago Dr D. at Hot Air City hospital theorised that in her high doses of various forms of Sinemet, the trade name for a composite of Levadopa and Carbadopa, she was possibly receiving an excessive amount of Carbidopa which may have been crossing the blood-brain barrier and that would have toxic effects. So Dr D. told her to change from, say, Sinemet 200/50 to Sinemet 200/25 (the number after the / is a measure of Carbidopa). Being a good patient, she followed his instructions. However, I don't remember any follow up about the effectiveness of this change and shortly afterwards Dr D. discharged her from his responsibility. Now my understanding of the function of Carbidopa is to minimise the side effects (what else - all this crap has side effects) of Levadopa, one of which is biliousness I believe. I was tempted to have her return to Sinemet with the higher Carbidopa content, but since the symptoms of upset stomach seem to be waning I decided against it at this time.

Polly the PD Nurse had mentioned a waterproof bag used by diabetics to hold infusion pumps; I ordered one from the UK. It arrived Tuesday so I placed the Apo pump into it  before the Personal Help from Wild Dog arrived to shower her on Wednesday morning. The pump, complete with syringe, is a snug fit and the water tight seal does not restrict the flow to cause OCCL errors.. Much much better than the little box supplied with the Apo pump, the sarcophagus shaped box which I had to seal with tape each morning.

At 0300 on Thursday she woke me because of severe cramp pains along the length of both legs onto which I rubbed Ice Gel which relieved the pain somewhat and also packed her legs with pillows. She said her right leg was worse than the left. At 1520 that same day pain in her right leg required more Ice Gel. How often she applies it herself I do not know.

She had an appointment at West Beer Private Hospital for an MRI scan at 1445 on Friday. Wild Dog supplied a car and driver to take us there; a two hour trip, arriving almost an hour early which gave sufficient time to check in and complete the usual 4 pages of questions for which I had forgotten our data sheet of her medical history so we had to guess some dates. Why can't these places mail out such questionnaires to be completed more accurately and at leisure? So much for being early; we waited till 1530 before entering the MRI room, only 3/4 of an hour late. Then her bra, Apo pump and infusion needle had to be removed while she sat on her walker in the "dressing room" which was so small I was outside it, stooped over her tummy to remove the Apo gear. Almost 1 1/2 hours later, at 1655, I had the pump, new syringe and a new infusion needle fitted, again working half in, half out of the "dressing room". As we left I asked at the reception area for the paperwork to sign after going through the trauma, but there was none, just had to accept a bag of scans to give to our doctor at the next appointment. "But we don't have one" I said but the girl was disinterested to know that we were from out of town. Stuff it, why can't they courier the images around during office hours? Since she had no lunch, having had to fast for two hours prior to the appointment (what a laugh) we called into McDonalds on the 6 lane as we drove west, but she only fancied a few chips. I asked her whether she shook much during the ordeal; "No, they strapped down my legs and head so no part of me was able to move. The straps were about 6 inches apart the whole length of my body." At one point they gave her salt water to drink, then later fresh water. The technician bloke who inserted into her arm the needle for the dye was a smart arse that didn't listen to her comments about where to make the injection, consequently he made a mess of it before following her suggestion. Perhaps jokingly he suggested that he may need to use her lower leg, her shin area I think she related to me.

Back home at 2000 I noticed the right side of her face was puffy, a tooth on that side has been sensitive. An abscess I suspect. She refuses to see the excellent dentist because of the chair lifts to get to her. Anyway her feet were tingly and her left leg had been burning. As I took off her shoes and socks I noticed her left foot was warm but her right was ice cold. She felt a non-existent draught as she lay in bed, well covered but feeling cold.

At 0245 Saturday morning when she took her 2am meds there was an ache behind her eyes. She had a reasonable Saturday at Wild Dog respite. Because of the pump changes the day before, the pump was replaced at 1700.

The Apo pump was changed at 0745 today, Sunday, to return to a reasonable time just prior to showering each day. She needed some filling for pillows she was making for Wild Dog so I took her down the street this morning to shop. After wheeling her on her walker in and out of several shops she was happy to have lunch at the Club. Afterwards, I drove to the shopping centre car park, then pushed her to Kmart, then over the road to a junk shop before returning to Kmart to buy substitutes for what she wanted. Home again at 1400 in time for meds and a loo visit. Today has been the first time she has been out to shop since the time she fell in Kmart, many weeks ago.

After I began to type this blog she needed the loo and to go to bed, well, just to partly undress and lay on the bed. As I took off her shoes and socks I realised her right foot was icy cold while her left was quite warm. This about 2045 I took some pictures to show white toes on her right foot, pink on her left. Then attached the temperature probe to my multimeter and measured the temperature of each foot, holding the probe in place with sticky tape, the same I use to hold down the corners of the infusion opsites. Her left foot measured 29 degrees C, the right 22 degrees C and the ambient (probe hanging in mid air) 22 degrees C. I took pictures of these readings. Then she decided to sit on the commode for awhile. After that became uncomfortable I helped her into bed after fitting her midnight bloomers just before she took 2200 meds; her left foot remained warm, her right very cold. It appears that the problems with her left foot are now becoming obvious in her right, I can but wonder how soon she finds that her right leg begins to "give way" unexpectedly.

The following pictures are samples of what I took of her feet around 2100 tonight.

Image 1. Ambient temperature of 21C in our bedroom

Image 2. Her Left Foot 29C

Image 3. Her Right Foot 22C

Perhaps not very accurate readings taken under non-ideal conditions, but each taken within a few minutes of each other. I find this very interesting. Do other Parkies experience similar problems? Is this just a symptom of end stage PD? Is this a symptom of drug induced neuropathy?

Tomorrow, Monday, she has an appointment for a nerve conduction study down in Hot Air City, at an expert we haven't been to yet. I'll take some pictures with me.

Chapter 351 - Decisions

My 93 year old Mother died last Monday up in Cane Toad country. Her funeral is this coming Tuesday. I had intended to go. Even checked out the respite facilities at Wild Dog last Thursday. I almost committed to placing her there for two nights next week while I drove and flew up north. But by Friday morning early I decided against attending the funeral, even though I am the eldest issue and for some unknown reason I was named executor in the will, an honour and obligation I can do without.

The respite accommodation was excellent, she is familiar with Wild Dog for that is where she spends 2 days each week in respite and the Personal Care ladies come from there as well, yet she voiced concerns about her ability to manage herself in the room's en-suite. Yes there are bars on the walls and plenty of space, the bed is similar to hers at home. No bidet of course, a most important consideration for someone unable to lift her bottom sufficiently to wipe herself. At present we are having difficulty making her nappy night-time bloomers water tight (perhaps nursing staff don't have that problem); an embarrassment for someone whose childhood was marred by bed wetting, having to wash her own sheets and hanging them on the clothesline before going to school. Then we found that I needed to give the nursing staff a demonstration on setting up the Apo pump (not giving her confidence in their knowledge and ability, although I think that is unfair) and a letter from our GP detailing her medications; neither presenting any difficulties. Of course, surprise was registered when the word "Apomorphine" was uttered, words of explanation and inspection of the fine print of the leaflet in the ampoule package were required. However, she lacks confidence that nursing staff will be able to safely set up the Apo pump, having seen only one nurse at the local hospital attempt the task and fail and at another hospital when nurses were otherwise occupied when the pump ran out. No great barriers to a couple of days and nights in respite you may say. Of course not. However, I have spent over 50 years sharing my life with this woman but only my first 15 years with my Mother followed by arms-length contact ever since. I have shed no tear, neither physically nor emotionally. Perhaps you will say that I am in denial. Someone, a long time ago, said "Let the dead bury the dead".

I made very few notes this week. She often asks for cardigan or poncho; her system seems to swing towards being colder than expected, even when a room is warm. She attended a "Xmas in July" lunch on Monday before I took her to the Imaging place for an ultra-sound on her left leg; the results indicated nothing wrong (as far as the operator could tell) except that the tremors in her feet made measurements in her lower legs virtually impossible.

Several times this week she has forgotten to take meds on time and once she took her 6am meds at 2am. There has been almost no mention of tingling in her feet, definitely no burning sensations.

She is making fancy wash bags for sale at Wild Dog. Quite often on a morning she complains that what was hand sewn very slowly the afternoon before must be picked apart next morning to make corrections. Even so, she perseveres; good therapy for her, encouraged by the staff at Wild Dog.

Chapter 350 - "Most peculiar" she says

In getting my bearings this morning to compose another "essay" in this blog, I noticed in my notes (I keep notebooks from which I have trouble reading and comprehending my impromptu scribbles) for last Sunday  after I had posted Chapter 349, the following:

"1420 face going numb 122/72 63 [wrist mounted BP monitor] Stomach 'squirmy', bowels feel active
1430 face still numb toes both feet tingling like mad
1435 leg tremors chin wobbles"

A few minutes later her very good friend (who has MS and a husband with frontal lobe dementia) rang for a long chat and face numbness was forgotten about. Although my later notes record biliousness without vomiting,, blurred vision, wheelchair trips to toilet and return, leg tinglings, fear of panic attack, sleepiness and generally "feeling awful". Face numbness was forgotten about in speaking to GP Dr I. on Monday or neuro Dr FC at West Beer on Thursday (more later on those appointments).

Back to getting my bearings this morning. So I went out to ask her whether she had experienced any more "face numbness". She wasn't sure, referring to various tingles in her head. Then she astounded me by saying "Something most peculiar happened", describing how a little while earlier she had risen from her Rev chair at the kitchen table, pushed her trolley to the kitchen cupboard (less than 6 paces) for some dried fruit to nibble, turned to go back to the Rev chair but instead of proceeding forwards, she shuffled/stumbled backwards until she collided with the bench top/cupboards at the kitchen sink (our kitchen is in the form of a hollow rectangle, the sink at the far end) whereupon she then proceeded forwards returning to the Rev chair at the kitchen table. After seating herself she called me on the CB (I was in the midst of my daily dose of Lumosity) to carry her sewing machine from her sewing room to the kitchen table where she began to sew some bags for Wild Dog Respite, without a word about walking, well shuffling, backwards in the kitchen. If I hadn't asked her about "face numbness" she may have forgotten this incident!

Last Friday another event was remembered and told to me hours later; she stooped to pick up something on the floor of her sewing room, toppled forwards, struck her forehead on her desk. When I inspected her forehead, there were two small slight pinkish areas on the upper right side and may not even have been where she struck her forehead.

Then another incident this morning, Sunday. Before she has a shower, a place an elastic band (which I refer to as her "chastity belt") around her waist on which her Apo pump, in its supposedly water proof sarcophagus, is supported. After showering, the elastic band is usually draped over a towel rail by the Wild Dog Personal Care lady who helps her shower. I later retrieve the elastic band to wrap it tightly around a rung our towel warmer where it flattens and dries for next morning. This morning she decided, for unknown reasons, after being dressed, to wrap the elastic band around the towel warmer. As she did so her left leg gave way, she stumbled sideways, bumping the rubbish bucket and whatever else as she collapsed into the plastic chair kept beside the toilet bowl. A few seconds later, she rose from the plastic chair and pushed her trolley out to the kitchen table for breakfast.

Now to return to the beginning of the week. On Monday a phone call from the GP had us talking to him at 4:15pm about the results of her recent blood test. Her B12 level was about twice as high (1476 pmol/L) as normal  (180-740) which he does not believe was due to him giving her the B12 injection a short time before blood was taken for the blood test. He advised Vitamin D be taken at 3000 iu per day for 2 months and thereafter 2000 iu per day for ever because the blood test gave a "marked deficiency" result at < 25 nmol/L rather than 51-200. The blood test also indicated that Antineutrophil Cytoplasmic Antibody (ANCA) was positive, although of no immediate concern. Dr I obliged us with referrals for nerve conduction studies on her lower limbs (21 July) and arterial doppler ultra sound on her left leg (8 July).

Each day this week she has experienced biliousness which seems to begin in late morning but seems to be lessening. Yesterday, Saturday, at Wild Dog Respite, it began about 1pm so today she does not wish to eat any lunch. Last Tuesday at Wild Dog she sat in the foyer from about 2pm because she thought she may have been sick until I collected her at around 3:45pm. Her mobility is much better, although we had difficulty getting her into and out of the car on Monday and Tuesday. Most time she is able take herself to and from the loo. My right shoulder is slowly recovering, and when I remember I rub some Voltaren on it.

On Thursday Wild Dog provided a car and driver to take us to West Beer to see neuro Dr FC, a most thorough doctor. She copied the 70MB or more of PD records I offered her on a memory stick onto her system and when I showed her the printed images of the pink and white soles of my PWP's feet I took last year she quickly snapped them on her mobile; if I'd known I would have provided other images and videos on the memory stick. She wrote scripts for another blood test plus a urine test which were completed on the ground floor of the building as we left; a script for an MRI (18th July) and at a time to be advised an L-dopa holiday and duodopa test. The only problem on the day was the swarthy individual on guard at the gate into the car park that told our driver to let "the old people out near the lift then park over there in that slot". On our way home we feasted at McDonalds. However, today Sunday, she does not want lunch so she can avoid feeling bilious.

Friday I returned to making copious notes when she felt "crook", sleepy, tingles etc. Strangely, she bottles up her problems when with others, as on the trip to West Beer.

Saturday she realised that her speech was slurred as she spoke to the Care lady while showering. I frequently notice this.

For several days now she has felt cold (well it is winter now), more so than expected, so I assume her regulatory system is not controlling her body temperature to be warmer in a similar manner to a few months ago in warmer weather when she tended to be too hot. Last night, even though the room heater had been on she needed a quilt on her bed. On Friday evening she felt "churned up" and cold even with the heater on but 45 minutes later she was so warm she needed to remove her cardigan.

This morning at 4:40am she woke me in fear of a leak in her nappy pants. I found her diagonally across the bed all twisted in the bed clothes. She wanted to get up to sit on the commode. I didn't wish her to. She was quite warm, even her feet. So I straightened her and I think we both returned to sleep. At 7:10am she woke me again (late, since I need to rise earlier to shower, prepare Apo pump, remover her nappy pants, arrange her clothing and incontinence items prior to Personal Care arriving around 8am). She said she had been trying to wake me; she was at the foot of the bed attempting to release the "adult proof" latch on the side rail of her bed. Perhaps she had called me; I had been half asleep listening to snippets on RN since 4:30.