Chapter 311 - Changes

Notes written Monday 23rd. When I asked her this morning what she thinks of Apomine so far, she said "It doesn't seem to be filling in the gaps". In my opinion we are both putting more effort and time into procedures with no improvements in her condition. We appreciate that she is only a little over a week on Apomine and that adjustments are required so we were looking forward to seeing her Considerate Neuro again this Thursday as indicated when we last saw him but are disappointed that the appointment letters which arrived a few days ago indicate that 24th October is her next appointment. (This turned out to be a bureaucratic error and we see him this coming Thursday as expected)

In the previous post  I mentioned because she had been solidly OFF leading up to her 1400 and 1800 meds I intended to give her a bolus prior to those times. But at 1340 Sunday she became cold , "chilled inside to out", then felt hot and slightly nauseous, felt dreadful and wanted to take her meds early. Probably mistakenly, I decided to try a bolus. Five minutes later she felt less nauseous, at 1350 yawned, at 1400 felt much better and took usual meds. Then from 1450 she fell asleep in her chair, waking about 1630 when she was disoriented and "floating" then dozed until 1710 when she woke, went outside to water some flowers but changed her mind, feeling confused so came inside again. At 1735 she felt good, "better than I ever felt 20 minutes before meds time." I had her walk around the kitchen table which she did quite well without her walker (on the spur of the moment she decided against using the walker). She said she suddenly felt "bright". So in view of such fluctuations there have been no further bolus shots as I had planned.

Some of the insertion points have bumps beneath. One point became very itchy but that is fading. Usually minor bruising occurs from where the sticky film was removed, not at the site itself. The damn stuff is hard to remove, although she says the removal does not hurt.

I thought she was to see the local physio this morning but I had mixed up the dates. The substitute GP for Dr Flower has not called with any bad results from the blood and urine tests so I made an appointment to see him on Wednesday. She needs to see someone, anyone, who may be able to help with the pain and tingling in her legs and feet.

Yesterday has been the only day she had no left leg collapsing when her left foot twists inwards, but possible because she is being extra cautious .

This morning she woke and had a Sinemet 250 at 0200, then unable to return to sleep, rose at 0330, banged her walker into me in my bed (accidentally), collided  with the wardrobe on her way out to her chair in the TV room. When I woke at 0600 she had spent from 0500 to 0600 on the loo trying to do a job. Then our day began with shower, apo etc etc.

Notes written Tuesday 24th. I woke at 6am to find her on the loo where she had been since 5am . Her feet clumped as she walked stiff-legged back to the bedroom. Later when I emptied the commode bowl I noticed an oily film on top; she has noticed a same on another occasion when she emptied it.

Both lower legs are very sore and there is a sore spot on her right thigh.

She phoned me at lunch time today  (Tuesdays is lunch at a Thai restaurant for me) from Respite where she had been very shaky from 11am. She had taken her 10am meds on time as I drive her to there. She wanted to be collected and taken home. She sounded on the verge of a panic attack. At home around 1330 she was eager to bring forward her 1400 meds. I suggested a bolus shot instead at 1340 when she her legs were shaking quite a lot. When she raised her legs on the chair her legs became still long before the bolus could have had an impact. Immediately after her usual 1400 meds she needed the loo and was still there at 1440.

Half an hour at least before each meds time she is looking forward to taking medication. During the afternoon she slept between 1445 and 1600. A little after 6pm she called on the CB, frozen on the shower chair next to the loo unable to pull up her trousers.

Tucked into bed and asleep after removal of the Apo pump at 2215, she began to speak loudly and clearly, giggled and thrashed her legs about.

Notes Wednesday 25th. She said she slept well last night, failing to take the Sinemet 250 now usually taken around 0200. Almost continuous pains in both lower legs. At 1215 she froze going into the bathroom for the loo. We saw the stand-in GP at 1430. After having trouble finding the blood and urine test reports from last Friday he slowly read the conclusions on his screen, finding everything "normal" and he seemed to think the lack of a positive UTI result was due to his prescribing antibiotics. I couldn't be bothered to enlighten him that since the tests were taken early last Friday morning and the script was filled later the same day then the unnecessary medication had no effect on a non-existent condition.

Notes Thursday 26th. We showered (she wheeled there seated on the commode chair), dressed, set up Apo pump by 0620 for an early start  for the Hot Air City Hospital, except she needed to lay on the bed because she was unable to bear the pain in her legs, which she described as "the worst they have been". When we arrived at the hospital car park she was unable to walk the distance so I pushed her in her walker. We arrived early so I bought her puzzle magazines and I had a coffee. During the day I used the toilet three or four times, yet she did not need to until we returned home and that I simply do not understand!! A stressful morning for her being pushed in her walker in the busy hospital, answering the questions on the usual questionnaire prior to meeting with Polly the PD Nurse then the Considerate Neuro. He pointed out that the "kicking" motion of her feet (as she sat in her walker) was dyskonetic in nature, therefore too much medication, so he wants her to cancel medications at 1000 and bring forward the 1400 to 1200 for a week before cancelling each of her Comtans at weekly intervals thereafter. By the time we left the hospital, I was irritable, she was stressed, still unable to walk but afraid I was about to tip her out of the walker, so she waited on a bus seat outside the main entrance where we noticed people double parking and parking longer than allowed, so I left her there, brought the truck up and double parked while I helped her in. A gust of wind caught the heavy duty plastic bag she has sat on for years and it disappeared. It has deserted the trusty vehicle now that we are trading it in. We called at the junk food place near the airport but she wished to stay in the vehicle. She had no wish to enter the Big store when I went to look for a jacket. She took her 1400 meds 15 minutes early because she needed them although there was no shaking but her feet were burning and she was very slow. By 1730, at home, she felt herself "floating", unable to concentrate, feeling cold, leg pains in calves and under the arches of her feet, very sleepy.

Notes Friday 27th. This morning she pushed her walker to the bathroom to have a shower. Yesterday she couldn't. I took video clips, at least hourly, of her feet activities and her hands completing the Parky loved finger tip exercise which the Considerate Neuro said was a good way to determine whether the Parky was OFF or ON. After editing and merging the clips into one file I must confess I see little difference between one test and another throughout today. She woke at 1600 after an hour's sleep complaining of a pain over her left eye which she then told me was there all day. By 1800 the pain was completely across her forehead. Her feet continue to tingle and are painful when on the floor. When I took down the Apo pump the insertion point bled quite a lot, even though she did not feel it being withdrawn. The next day there is a deep bruise and a large lump at the site.

Notes Saturday 28th.  She had so much leg pain this morning I rubbed them with Ice Gel. She did not shower today. Then I wondered why we had not used the Circulation Booster or the small hand held TENS machines to ease her leg pains. So I attached the pads of the Circulation Booster to her right leg (paining the most at the time) and lower back and with both feet on the pads. Later the pads were removed from her back onto her left leg. The foot pads are not very effective because her feet make poor contact while they tremble. She was well enough to attempt some sewing but by late morning she too sluggish to proceed. By midday she had a pain over her left eye. At 1730 she needed the meds half an hour early. At 1830 as she went to the loo she said she was "feeling all together" even though her left leg was "failing and felt unstable". At 1845 as she returned from the loo, I was preparing food, when I noticed her leaning on the wall. Then as she began to move toward the TV room her body swayed strangely and was able to support her before she fell. Her left leg looked flexible, seeming to bend, easily sideways at the knee, her left foot rolled out, her left ankle almost touching the floor. Holding her under the left armpit I guided her toward her TV chair, she sagging each time her left foot needed to take her weight;  fortunately there were only six or seven steps to her chair. Again she had a mild headache beginning over her left eye, progressing across her forehead by 1700 then fading away.

Today Sunday 29th. At 0545 I wheeled her seated on the commode to the loo, then to shower. At a little after 0700 I connected our small TENS machines, one to each of her legs to ease the pains. By 0800 she was sewing at the kitchen table, but she stopped at 1030 because she had been making too many errors, so I helped her back to her TV chair. She took what were to be her midday meds at 1100 because  for the previous half hour she had felt awful, shaky and feeling very OFF. Since about 1200 she has returned to her sewing at the kitchen table.

Her schedule as prepared after her last Considerate Neuro appointment, except that she is modifying the times to be more evenly spaced through out the day (to be posted later)

Chapter 310 - A Week on Apomine

We have established a routine around apomorphine. At the time of her 0600 meds we rise, she with some difficulty, she showers sometimes wheeled in on the commode, other times sits on the shower chair kept in the bathroom. I help with drying then she puts on her incontinence pants and bra before reclining on the bed for my gentle administrations positioning the needle, covering it with sticky film, holding down the thin hose with sticky tape and starting the pump held in a pouch. Prior to all that I had already filled a syringe with the required quantities of apomorphine and saline for a 10 ml solution, actually two syringes because the quantities involved means that I need to use about 1 1/2 ampules of apomorphine so I prepare an extra syringe for the following morning. That means three 2 ml ampules are used per 2 days. The arithmetic does not quite work out for the exact quantities required but then again, the precision of drawing 2.7 ml of fluid into a syringe calibrated in 1 ml graduations 2 mm apart leaves a lot to be desired. After "2.7" ml are in the syringe sufficient saline solution is drawn up to the 10 ml mark.

Some nights we have both slept well, some nights wide awake. For instance, she woke at 0300 on Monday for the commode then remained awake and at 0730 I found her using the pedals then she showered before the Apo pump was in use at 0830. At 1315 she was asleep in her chair, to be woken by a need for the loo at 1400 at meds time delayed till 1410 when she felt cold, was very slow, tremors in her legs but no pain. Since she wanted to attend her physio session at 1430 I pushed the button to give her an extra shot (professionals call it a "bolus" dose) so that she was in a fit condition. Unfortunately when we arrived we were told that physio had been cancelled but nobody had bothered to ring her.

Since we were out, we went around the corner to see the District Nursing people to ensure some of them will be given Apomorphine training so she can be given support if I become indisposed for any reason. The person I wished to speak to was away for the week and the person that attended to us was more interested that we be given information about respite care etc and then diplomatically suggested that her management be contacted by a professional as the better way of implementing any training and perhaps we should contact the local Alzheimer's support nurse. I think that is what I heard, for I was fuming yet keeping my cool.Back at home I contacted the Apomine Nurse Support Service and the nurse responsible for our area said she would speak to our good support people in Hot Air City about training in our country town.

During Monday she remembered bumping the injection point with the pump held in its supplied "holster" and elastic waist band. I presume that caused the trace of blood I found beneath the adhesive when I took the pump down that night.

Tuesday was an uneventful day when she was at respite. I didn't make any notes. I remember buying some alcohol swabs, a large bottle with pump on top of hand rinse stuff, a large jar of skin cream and other consumables  and our friendly chemist rang the local hospital to ask whether they will be able to fill the scripts for Apomine, since he had checked the other day and found he cannot. The head pharmacist at the hospital said although the hospital has never used or stocked apomorphine they should be able to supply. I will need to front up there well before our supply runs out.

Same on Wednesday, I don't remember anything about Wednesday, perhaps this week lacked one? Now I remember, that was the day I took a lot of video clips of her during the day to be sent to Hot Air City as examples of her performance since I find we are unable to convey in words the tremors, wobbles, foot turning, walking steps and all such in technical jargon; maybe the experts can't either.

Thursday morning she was very immobile and showered on the commode. By 0635 the Apo was set up and running. She has found the Apo pump holster and an elastic band around her waist uncomfortable so we went to a bag store at our local mall where we bought a money pouch/passport holder with a band to go over the shoulder. She was pushing her walker out of the shop when suddenly she wobbled, began tilting to the left and her left knee folded. She was saved from falling by hanging on tightly to the handles of her walker; I was a few paces too many behind her to help her. Back home this worried me, the first time I had seen her left leg "collapse" even though she had mentioned it several times, the first really notable time was at the pathologists prior to beginning apomorphine. So I contacted Polly our PD nurse in Hot Air City, she suggested her seeing our local GP. Our fantastic Dr Flower was booked up solid and was leaving town for home (she lives in Big Smoke) so we had to see another GP. He quizzed her about all the usual body functions, BP & stethoscope on chest and carotid arteries then when she mentioned frequent nocturnal urine voiding he assumed she possibly has a UTI, prescribed antibiotics and referred her for blood tests. He gave her a plastic container to piddle in so I took her to the surgery's ladies, cold, cramped and not disability friendly. Even after 4 paper cups of cold water, many litres of water splashing down the hand basin, she was unable to piddle. At home I used one of the test sticks left over from her previous UTI saga of a year or so ago but no UTI evidence appeared.

At 0800 Friday morning we were at the pathologists where 5 vials of blood were taken and it was suggested she go home with a container to piddle in comfort because the nurse assumed she was likely to be unsuccessful in their loo as well. So I returned with the sample later when I also collected the antibiotic script. This is how excessive usage occurs; give the medication before its use is proven to be needed. Anyway, he's the expert.

She had made some special chocolate dishes for we had two friends  around for afternoon tea for they wished to help us celebrate our birthdays. By 1645 she felt very shaky and then began to feel insecure on a normal chair, so retired to her tilting chair where she was more secure. By 1800 she was nauseous but not sick and by 1915 was more squeamish and cold. We both went to bed about 2000.

Yesterday, Saturday she remained awake after taking a Sinemet 250. She had 0600 meds, showered and the pump set up by 0620. By 0800 she was planting some flowers bought a few days ago. She did some washing on and off during the day; I did the hanging on the line. After 1400 she dozed in her chair. At 1800 she was dozing , feeling squeamish, "keeps coming over cold, feeling chilled from the inside out, no pain in the legs but the tingling in legs and feet comes and goes" in her words. In the middle of the afternoon (she told me later) while standing in the laundry her left foot turned, as if something tugged her foot to the side and she needed to grab the laundry sink to support herself. In her words "my foot felt thick and felt as if someone was pulling it". I fear leaving her out of my site, yet I can not be always close enough to help, as experienced on Thursday.

Today has begun well. Her tummy has two sore "bumps" at injection sites. There are various patches of bruising where the rectangular sticky film was positioned over the injection sites but these quickly fade.

She says she is OFF prior to her 1400 and 1800 meds so from tomorrow I plan to give her a bolus dose near those times when  she begins to sense the OFF commencing.

Chapter 309 - I Was All One Piece

Leaving the bedroom this morning, pushing  her walker, she replied ""I was all one piece at 6am" to my query about her condition.

Yesterday lunchtime we returned from 5 days at the Hot Air City Hospital where she was admitted Monday afternoon for a short drug holiday and tested with Apomorphine Tuesday morning. Her fears of entering a drugged sleep state as a result of a  similar trial over in the West about 13 years ago were unfounded; this time there were no adverse reactions so she was placed on an Apo pump. On both  Wednesday and Thursday mornings, supervised by Polly the PD Nurse, I set up the Apo pump and attached the needle to her abdomen. The needle type used was the Neria brand, no more than 1cm long protruding from a circular adhesive film, which is gently pressed against the abdomen, the patient/victim sensing neither pain nor sting. So the part of the procedure I most feared was the simplest. Although there is another type needle I wish to avoid using. Other than that, a syringe is filled with Apomorphine and saline solution before attaching it to a small pump attached to an elastic band around the waist. Because I came top in my class of one, she was allowed to leave hospital on Thursday to stay with me at the motel overnight. So I removed the pump Thursday night then reinstalled it Friday morning. The emergency procedures arranged by the hospital in case something went wrong were not needed and we returned to the hospital Friday morning. A busy day seeing the Neuro, PD Nurse and collecting a swag of medications at the hospital pharmacy. That included 70 ampoules of Apomorphine for the coming month. On Wednesday I ordered on-line a kit of consumables which I really hope will arrive by Monday before I need to resort to using the other type of needle.

Below is her current schedule.

I noticed last night that her incontinence pants show greater than usual leakage stains. She says she is passing more urine and the quantity in the commode was more than I expected for her using it three times last night - 0115, 0315, 0545.  She needed help to pivot onto the commode at 0315 but not at 0545, although a few minutes later she was too frozen to sit up without assistance to have her meds. Dr Carer has decreed that she is to take a pain killer every time she has PD meds. Just after taking 0600 meds she seemed slightly confused and lost her train of thought. However, she was in pain across her shoulders, down both legs and her lower back. We applied Ice Gel to those areas then about 20 minutes on the Circulation Booster followed by 10 minutes active pedalling. By 0700 her pains were easing to a tingle, as was her head, except for her lower back remaining painful. After a shower seated on a chair then the Apo was inserted by 0715 then she dressed. It was 15 minutes later that she said "I was all one piece at 6am", a comment she has not made before that I thought conveyed the idea of frozen, rigidity, stiffness more than adequately.

By 0900 this morning she was stumbling around without her walker and half an hour later almost fell because of "a lack of feeling in my left foot" caused her leg to fold. In discussing this she said her left foot tingles first, soon followed by the right which then switches to feeling "hot". The left continues to tingle. The tingling then develops into pain and if she exercise her legs too much there is a burning sensation in the outsides of both. I think I have this sequence correct.

When I asked whether she was up to having lunch at the club she readily agreed, so we did and she was eager to leave at 1330, 1/2 hour  before her next meds. I went super market shopping without her; she waited in the truck, I had instructions to buy some exotic ingredients for some cakes she has decided to bake. After returning home she had a long chat to her friend down in Batman City then came out here to the dungeon to see whether I was still awake (I was typing this waffle) when she stumbled and bumped the sliding door.

She had a lot of bother with bowel activity while we were away so yesterday afternoon, well before evening I prepared a glass of grape juice and a largeish quantity of Metamusil; had satisfactory results when we returned from shopping. I had been instructed to buy licorice which may be unnecessary just now.

This afternoon I verified that our local chemist is unable to source/sell the Apomorphine ampoules; he suggested that our local hospital may be able to and that will save us monthly trips to Hot Air City.

I hear sounds of small items falling in the kitchen so I must see what she is doing, probably without her walker nearby.

Chapter 308 - I Don't Know How

"I don't know how" she said, seated on the side of her bed, feet on the floor, both hands pressing down on the edge of the mattress. She referred to the simple action of standing, turning 90 degrees to sit on the commode. I got out of bed, my arm beneath her left arm pit to help raise her then pivoted her so her bum was above the commode. There must be a difference between being "unable to move" and "not knowing how to move". Stuck in my mind, this event occurred one morning earlier in the week. I suspect she has said such things before without my noticing.

On Thursday, on being shown the photos of the white blotches on her feet (see Chapter 306), her podiatrist wondered whether she experienced Raynaud's Disease although he expected her toes to be somewhat blueish - well a couple of them were, although the photography failed to capture the colour. He again checked her feet with an audio probe and said the results were satisfactory. Of course, at the time she only had mild tingling in her feet. Once this coming week's Apomine trial is over we will need to follow up the the tingling and pain in her feet should such continue. The last thing she needs is damage to her toes.

Tomorrow, Monday, we have another "holiday" in Hot Air City. Mid week we received instructions, scripts and a diffusion pump kit in preparation for her to enter hospital tomorrow in preparation for an Apomine Trial on Tuesday. We made an appointment at the local Pathology for her to have a blood test and an ECG at 9am on Thursday required before the trial.

She had to cease Sifrol from yesterday, Saturday, three days before hospital admission and also begin taking an anti-nausea medication, since one of the side effects of Apomine is nausea. So her current schedule is

I suggested she return to her original 4 hour timings since the delayed times were giving her less mobility and the lack of the highest dose of Sifrol was sure to have a detrimental effect.

She finds keeping her feet raised while on her recliner to be helpful for her pain/tingling in legs and feet but she is bothered by her feet extending beyond the recliner. So she now has a small coffee table and firm pillow supporting her feet while she is on the recliner.

I awoke around 2.30am when she shouted "Let me out!" as well as other less distinct words and I remained awake for ages afterwards. This morning she mentioned that she used the commode 6 times between 10pm and midnight, and hourly thereafter. I have to believe her, the night was a blur; she said the commode pot was almost full when she emptied it (she often struggles to empty it herself before I get around to doing so; I prefer her not to, one day there will be an accident). She is dead scared that "something" will happen to me; last night I was very tired (and depressed by the election results) so I went to bed a little before 10pm to read. When she realised this she became scared of being outside on her own, unable to switch off lights and TV. I have been feeling weary and not very agile these past few weeks so she keeps asking me whether I'm OK, which irritates the hell out of me. so I upset her and she cried going to bed.

This morning she felt the need to have the small plastic shower chair to sit on while showering, although she didn't need wheeling in there on the commode.

We decided not to have lunch at the club today.

Chapter 307 - Some Stress

On Monday afternoon she saw Dr Flower. The appointment was for 3pm; we sat there patiently until about 3.45pm Dr Flower saw us and queried whether we were to see herself. The receptionist seemed to have left us out of the electronic queueing. I showed Dr Flower the pictures of her blotch feet. She felt her feet to check there was feeling in the toes then prepared a plan for her to have 2 visits to see the Dapper Podiatrist (who she sees regularly anyway, with an appointment next week) and 3 visits to see the Happy Physio (who treated her some years ago when she had fallen and tore the ligament in her left leg). Monday evening she went to bed at 7.45pm.

Tuesday was respite at the sheltered workshop. During the afternoon she and the rest of the group were taken on a walk around the paths of the establishment; about 1/2 an hour. Towards the end of the walk both her legs began to burn badly. That evening she went to bed at 8pm. She continues to repair crocheted rugs for the stall, keeping her fingers active, although I am sure she requires more effort to concentrate on her activities as each afternoon progresses. She complains that with the 1/4 hour delay in each medication time that she is OFF much longer, up to 2 hours before meds time I'd say. Perhaps she should return to the old schedule but I'll leave that up to her to decide.

I stressed her on Wednesday when I found her placing her purse back into the safe. She had needed it to tell a caller to her mobile phone from TGS/TSA, a sleazy marketing organisation representing Telstra, her Medicare number in order for enough points to be given a $5 discount on her mobile phone. I yelled at her that she must never ever give such information to unsolicited callers. I rang the organisation several times, getting lost in their queueing system, and I think it may have been a "genuine" call, before ringing Telstra  itself to be told that such a "discount" was not possible because we had a "bundled" account with all available discounts applied anyway. Anyway, I sent a complaint email to Telstra so I had something in black and white. But how can such numbers be retracted? I can only hope there are no identity consequences to this experience now that we have been exposed as vulnerable old farts. The voices were foreign, the number in WA, but where on earth the call centre was is anybody's guess. Although our land line is on the "do not call" register, it seems her mobile wasn't.

Thursday she saw the Happy Physio to whom we spoke about pretty well everything to do with her problems other than her feet. The Happy Physio was the one that helped her most of all when she was experiencing panic attacks, this was brought up in the conversation, I had forgotten, and that explains why she breathes loudly through her nose often when she is OFF and pushing her walker to and from the bathroom, or when getting in and out of the vehicle. Also, the happy Physio reinforced the idea of taking pain killers regularly to get on top of some of her difficulties; suggested she use the pedals for 10 minutes each day, once under power, once powered, so that her legs experience variability in exercise. She hasn't really started the pedalling regularly; reacting when I suggest the pedals with comments such as "I can't do everything at once" or "I can't do it when I'm not up to it"; she prefers hand crafts to wasting time on exercise when she is ON. Anyway, the power cord is now velcro'ed onto the body of the pedal machine to remove a hazard and it sits on a larger mat held in place by the weight of her old chair, the one she used before we bought the recliner. Most of the appointment  was used discussing incontinence and nocturnal usage of the commode. She was advised to practise some delay and pelvic floor exercise to delay each event. Surprisingly, since then she seems to be using the commode maybe twice between 11pm and 6am. Yet I seem to be rescuing her more frequently off the loo during the day. Somewhere in the conversation she mentioned her fear of travelling south for the November wedding.