Chapter 356 - Becoming Too Tired To Care

I'm not keeping as many notes as I once did. To do so is such a chore. Time is passing quickly yet we are not grasping the opportunities we have. Next week a year since she began Apomorphine, a year sine I subscribed to New Scientist and I wonder how much we have benefited from either.

During the past fortnight she began rejecting the function of her overnight absorbent bloomers and pads. She began waking between 0430 and 0600 wanting to get out of bed. She needed to wake me to let the rails on the side of her bed down, then she wanted to sit on the commode. After several mornings I realised what was happening, so weighed the bloomers and pad worn that night; I calculated she had leaked approximately 50ml into the bloomers. No wonder she was eager to get out of bed! She had retained the 700-900ml that had been in the past been voided into the bloomers or into a catheter bag some months ago. Prior to this discovery there had been several leakages because, I suspect, she had become restless and 'fiddled' with the bloomer attachments; one morning I found that one of the sticky attachments had been torn off from where it had been attached in manufacture. Some nights the band and attachment points chafed near the Apomine infusion points if I had placed the infusion too high on her tummy the previous morning; another irritation in the use of such incontinence aids.

I realised that wearing the incontinence bloomers may have trained her to reduce the amount of night time voiding. So the next night  I gave her the choice of bloomers or the commode at her bedside; she opted for the latter, wearing only a 'day' pair of incontinence pants. This meant leaving the bed rails down for her to get out of bed on her own without waking me. Worked like a charm! I slept right through and she rose twice, presumably at meds time around 0200 and by 0600; I forgot to ask. I can understand her desire not to wet herself in bed; firstly the childhood 'punishment' she had received for bed-wetting and secondly one's natural dis-inclination to soil oneself (I remember being unable to piddle into a cold bottle while lying in a hospital bed, until I swung my legs over the side and even then I needed to concentrate).

Somewhat excited that we had made a break through with our sleep disturbances, we proceeded to repeat the experience the following night. Unsuccessful! Take last night as an example. At 0325 she called out to wake me for help to move from the bed, where she had been seated for a half or so, onto the commode. She lacked enough mobility to raise her bottom to slide from the bed onto the commode. Then again at 0630 she woke me again, supposedly to get me up to do Wii Fit, shower and dress, exchange Apomine pump and infusion point prior to the Wild Dog daily care arrived around 0800. Her hidden agenda was for help onto the commode again. When asked how long she had sat on the side of the bed she replied 'Since 5AM' and then I discovered she had not taken 0600 meds which were beyond her reach on her trolley, pushed aside for the commode, so they were taken 3/4 of an hour late.

We both are going to bed shortly after 1900 in an attempt to capture some sleep time, lost to her later while getting up, sitting on the side of the bed or commode; me if I attend to her and hours lost listening to the radio through an ear bud; yes I know I must pipe some therapeutic noise into my head to help sleep return.

Fortunately I emptied the commode pan early this morning, prior to setting up the Apomine. The commode has a loose and extensible foot rest on it which we pull out for her to rest her feet on because the OT set the commode height adjustments so that her feet were off the floor when she was seated. I presume there may be some hallowed OT reason for that; perhaps I will position the commode seat lower. Anyway, after setting up the Apomine on her tummy I helped her back onto the commode, extended the foot rest for her comfort, then I turned away to tidy away all the packaging detritus from syringe, infusion needle, ampules, tissues, opsite. Suddenly she was head first on the floor behind me, having exerted so much downward force from her feet onto the foot rest that the commode tipped forward. You will appreciate my joy that I had emptied the commode pan prior to this accident. Unhurt, having missed striking her head on her bedside cupboard by several inches, I helped her back onto the commode, a few minutes before the daily care arrived. When I asked what had happened she said that because there was no feeling in her feet this morning, she had no idea how much force she had applied as she attempted to position her bottom most comfortably.

That was the second fall this week, the first was a more conventional one. Readers will know that we use CB radios in the house so that she is able to call me when needed. Only rarely are we without them. Wednesday morning at 1000 med time she said she felt dizzy and was seeing double, not unusual, but I should have paid greater attention. About 1130 the phone rang a number of rings before I picked it up (since there is an extension close to most places where she sits I usually leave it to her to play 'home secretary'). I can't now remember what the call was about but I left my dungeon to tell her about it. I found her on the floor just inside the front door and a metre away from where she could have struck her head on our wooden shoe box. 'How long have you been here?' 'About a 1/4 of an hour' she replied, prior to the phone ringing. She had gone in search of her CB radio (her's has a pink lanyard attached) in the bedroom but unable to find it, returned to the living area as she became light headed and dizzy, attempted to reach the shoe box to sit upon, failed, fell forwards almost string her head on a small table. Although there were no signs of damage to her, her left side felt tender later. I helped her back on her feet using the approved pillow beneath knees method. I found her CB radio hanging on her bed end. After the excitement we forgot to take her blood pressure, although at 1500 she felt 'funny' after being on the loo, called for the large bowl to chunder into (she didn't) when her BP was 149/96 64. Again at 1800 she felt whoozy, needing the wheelchair to exit from the loo. One thing I noted about this fall was that her left leg did not 'burn', her usual indication that she needs to find a place to sit before her left leg collapses.

I am sure she is losing the ability to design and then make items in fabric. I think I mentioned her repair attempts on a child's cardigan. She spent at least 2 1/2 weeks fiddling with the collar and the banding of the badly knitted thing before she was able to attach a fabric collar and banding. She repeatedly cut small pieces of fabric to be pinned onto the cardigan without being able to bring the process to a conclusion. She frequently spends hours fiddling with sewing that a year or so ago would have been a trivial task for her. Anyway, she finished the cardigan repairs well enough for someone to buy it off the 'Items for Sale' table around at Wild Dog Respite. I was pleased for her.

Today she took two teddy bears, for which she had made waist coats several years ago, around to Wild dog Respite. They are having a Teddy Bear Day. Although her two bears are different sizes, it appears she made the waist coats of the same size, leaving one for the smaller bear pinned to remove the slack. Such had to be corrected before exhibiting it. So she asked for my help to trace the outline of the small bear for her to make a new pattern. I was keen to see how she coped with a new waist coat, having already made one, albeit too large. She began snipping calico into shape, then went Googling for a pattern unsuccessfully. Late yesterday she stitched some tucks into the too-large waist coat, which was an easy way to correct the problem. I was disappointed, in a way, that she did not persist in making a new garment for the bear.

Yesterday another example of being unable to implement plans. She is not often in the kitchen these days but yesterday she decided she wanted to make a pancake each for lunch. She was able to mix the ingredients satisfactorily but something went wrong in the cooking; I opened front and rear doors to vent the smoke. The results were reminiscent of scrambled eggs, slightly burnt, although the taste was OK she said. I agreed.

Early in the week two physio people from Wild Dog came to assess her ability for exercise. One returned yesterday at noon  to run her through a series of seated arm and leg exercises, some with dumb bells. She feels a little sore today. Noon time was decided as a good time for when they arrived on Monday around 1400 she was rather immobile on her recliner. The plan is for two physio session, Wednesday and Friday. I applaud the keenness; other physios have done no more than have her walk a little. Strangely, yesterday my PWP was asked about her pain treatment, the physio not realising what Apomorphine was - obviously the records or instructions to staff at Wild Dog are confused. Next week I will provide some printed material to minimise the confusion. One day she may need to take up quarters there.

Recently I have had appointments to speak to a Counsellor at our Community Health and when I mentioned my concerns that my PWP is having difficulties completing hand craft activities, seeming to be unable to put ideas, plans, designs, into practise I was asked whether neurologists had ever tested her for such. I had to answer 'No', just the usual finger tapping, index finger touching nose, etc, demonstrations, except that Polly the PD Nurse arranged for an IQ type test for which she passed with flying colours, which I sort of expected, because up until recently, she completed all the puzzles in two weekly magazines both of which have unfortunately deteriorated into personal pulp garbage, so she no longer wishes me to buy them. I noticed her doing sudoku puzzles a few days ago. My Counsellor seemed surprised that other more appropriate testing had not been done. I forgot to ask what technical terms may be given for such but I'm sure Dr Google may have something to offer.

I now have a mild concern about myself; for years I have sent away a mail order poop test, always to receive a negative test result a few weeks later. This year a positive result returned, so I now have a referral to a doctor who will look in the appropriate orifice.

Chapter 355 - Crying "Wolf!"

Perhaps I cry "Wolf!" too often? Last Monday I took her to see our GP about her breathing problems. He explained that tissue at the back of the throat can cause the whistles, suggested she will have some relief by laying on her side, but didn't bother to use a stethoscope to listen to her breathing. He commented on her "improvement" when he saw her pushing her walker into his room (she usually arrives in walker or wheelchair); what did I say last post? Perhaps such a comment is uplifting for a patient on the mend. He had received a 3 page report from experts at West Beer, the only portion he shared with us was a comment that her left leg maybe a candidate for Botox. He gave us a copy of the report of ultra-sound  tests performed on her left leg; normal blood flow  in all arteries tested other than "the popliteal artery or other calf vessels" unable to be tested due to her PD condition. We left with a handful of scripts and referrals for bone density tests for each of us, which she will possibly not have done due to her imagined difficulties getting in and out of the mobile vehicle used for the tests. Anyway, her breathing remains difficult at times and the whistling still occurs, although she has found that laying on her side is a relief. I encourage her to use the breathing exercise machine, consists of three columns each containing balls raised by breathing through a flexible tube, given to her in hospital some years ago.

She often has mild "empty" stomach feelings, perhaps a little nausea, usually in the early morning and requiring a biscuit to settle her stomach.

Back to the dentist on Wednesday for several fillings. She finds this one a "bit rough" but at least access from the street is not too bad. No further work required at this time. Just for the record, she was prescribed Alpamox 500 after the extraction the previous week.

An Ultralieve hand held ultrasonic device was suggested to assist in minimising the Apomine infusion nodules on her tummy. So each evening now prior to wrapping her in her overnight bloomers I apply the ultrasound device to some of the larger nodules. It's too early to say whether there has been any benefit. Each morning after replacing the infusion needle I continue to apply the zinc type ointment and the hand held vibrator.

Each night prior to going to bed before 10pm I have her sit on the commode positioned at the end of her bed. Using the bed end she pulls herself up to raise her bottom sufficiently so that I am able to thread the overnight incontinence pants between her legs, positioning the rear at about the correct point above her bum/lower back. Then I wheel her around to the side of the bed and assist her from the commode onto the bed. Then the bed is raised to its uppermost level before applying the Ultralieve for 5 or 10 minutes. Then I tug the front of the incontinence pants as far as possible through her legs before pushing a additional absorbent pad down between her legs, then the "belt" straps of the pants are tightly fitted around her waist then the front flap is attached to the "belt". The adhesive pads which hold the pants together are not sticky or of velcro but have the feel of emery paper and must be kept well clear of contact with the skin. Then in the morning, usually around her 6AM meds, she sits on the commode again, I undo the the adhesive pads on the pants, she presses down on the commode arms to raise her bottom slightly while I, having taken a firm grasp of the front of the pants pull like mad to withdraw the wet pants and pad from between her legs until the whole lot falls into a waste paper basket. If we have been lucky, no overnight leakages have occurred requiring her bed to be stripped. Then back onto the bed and I prepare the Apomine syringes; 12ml amounts into two syringes because that is less wasteful now that we use 5ml ampoules, one syringe gets 8ml saline while the other is put aside for the next day. Then after taping up the new infusion, removing the old, applying ointment and vibrating the nodule she is ready for the Wild Dog Personal Care person to shower and dress her. Except lately her bowels send urgency signals about this time, which may delay the shower a little. About an hour each morning and night is required for these tasks.

Recently, while sitting on the loo, she commented that she was "able to push now that the meds had kicked in". And while I have been typing this note she spent most of the time on the loo. At one point when I checked on her in the middle of writing this post she told me that when she sat up straight the "imminent motion" was felt, yet if she leaned forward, the feeling disappeared.

Contact from the West Beer people that her next appointment is on Monday 8th September at 9AM!!!! (a year after beginning Apomine). She must cease all PD meds before midnight on the Sunday so that the experts can interrogate and observe her stone cold as a brick, after which she will be given a large quantity of Sinemet while her mobility is videod and assessed, overall 3-4 hours. Shades of a clinic in Batman City. No mention was made of bringing a picnic lunch. The hospital has a hostel but the bathrooms are "shared", which suggests bush pub accommodation, so not for her. There is a motel close by. Unable to contact the hostel staff by phone last Friday I checked with Wild Dog whether they were prepared to chauffeur us at 6AM on that Monday. They are prepared to do that. No matter what we do, I will have a problem to shower, dress and move her in and out of a car, or, shower, dress and wheelchair her from accommodation into the hospital. My druthers are for being driven there and back in one day, rather than spend two nights in accommodation (since I am not really up to driving after what may be a stressful day).

Instructions from West Beer are to bring the recent MRI scans with us on 8th September; she is in a panic since the scans may be lost because after speaking to Dr F's receptionist I posted the damn things to him at great expense. She fears being scanned again.

Yesterday she nearly fell after being showered and dressed, on the way to her recliner for breakfast. I was able to grab and support her on her right side; not ideal since she was crumpling to her left side. My efforts would not be approved by an OT. It seems that a burning sensation in her lower left leg signals imminent collapse of that leg.

Chapter 354 - "What's Wrong With Your Hand?"

"What's Wrong with your hand?" was the question over the phone. "What do you mean?" she responded. "Can't you pick-up the phone sometime and ring me?" was the reply. This from a close rellie without empathy for a Parky; not dissimilar I suppose from the rest of us. Honestly, I don't think she wishes to speak to people about her day to day issues, reporting what happens at medical appointments, attempting to describe her day to day problems. She has difficulty using the correct terms to describe her symptoms or treatment, in their turn they do not understand.

In like manner when I bump into people asking about her condition I tend to brush off the question with "Not too bad" and similar meaningless replies, rather than go into long rambling responses filled with suitable words and phrases which in themselves need clarification. "How long have you got?" I should ask, standing in the middle of a shopping centre, to which one would hope a polite response to be "Another time perhaps".

People fail to understand that wearing incontinence pants (plus an extra pad for safety), and  the instability of her left leg, tends to discourage her from "going out" for more than an hour or two; that public toilets, even if marked "Disabled" or whatever the more recent PC term is, and fitted with a token grab rail are usually not user friendly (some are even inside the female toilets meaning the disabled need to be independent enough to enter); that wearing overnight nappy bloomers are not easily disposed of either in motels or private homes without some embarrassment.

To encourage those living in Big Smoke to ring her, I configured our VOIP phone system to have a Big Smoke Direct Dial In number, meaning from that place calls to her are free or at local rates. So it costs us money to provide others with a service. Similarly with cards for birthdays and the like; she chooses electronic cards (which are not free) to send with personal messages attached. More personal than stocking up on a bundle of $1 cards bought in bulk at a junk shop.

Did I mention the right side of her face swelling a few weeks ago? She was disinterested in seeing our dentist where she needs to ascend in two chair lifts before fitting into a cramped waiting room. I found another dentist sporting wheel chair access. So last Monday she had a tooth removed without any drama so Wednesday she goes back for a general check up which will surely result in further work.

Recently her throat "whistles" as she breathes and she often complains of shortness of breath. And sometimes as I help her to or from the loo her breathing is quite rapid and loud, as if she were a stressed animal. So I made an appointment for her to see our GP on Monday, tomorrow. Last night, after settling down in bed after the incontinence bloomers and additional pad were fitted, she said breathing was difficult. She raised the head end of the bed to reduce the feeling. She said her breathing had given her problems all day at Wild dog Respite. She does not have a wog, her BP was 146/98 78 and her ear temperature was 36.1. Her usual foot tingling extended all the way up to her hips, something she has not mentioned in quite awhile. Even her head tingled. After returning from Respite, having been on the loo, she said she felt "strange" unable to better describe her feelings and was hesitant about shuffling her trolley back to her recliner.

Just now at 10:30 I went to her sewing room to ask whether she may like to have lunch down at the Club. An outing on a sunny day. She declined, although had I insisted, she was willing to go. She was making progress making repairs to a poorly constructed child's cardigan brought home from Wild Dog, something donated to them to sell. She has spent at least 3 days removing bands from the item and attempting to make paper templates to construct fabric bands in their place. A great waste of time, I offered to buy some cheap wool for her to knit a new cardigan in less time but she wants to defeat this problem her way. I am sure in days gone by the repair of the cardigan would have been no challenge to her. For several days I have watched her shuffling pieces of paper and fabric, as if they were part of a jig-saw. A moment ago she had the sewing machine going so I hope that quite soon she has the repair completed. Success will be good for her. Better than an outing for lunch.

Chapter 353 - A Tunnel with No Light

So we saw the doctor who may have performed a nerve conduction test if I had insisted but since Dr M. had done it, this one didn't think it necessary. On the other hand, he gave her feet and legs a good inspection and reflex tests, finding nothing wrong. I can't remember any comments about the temperature differentials between her feet. Since we learned nothing new, a wasted trip. The multi-page questionnaire filled in on arrival suggests the practise is obviously directed towards sporting injuries. Back home again on that Monday I rang the the neuro's rooms in West Beer for directions on how to deliver the images from the MRI scan the previous Friday. "Just mail them to Dr F's rooms" I was told, "But my wife saw Dr C" I replied, to which the response was "She's just a locum who fills in for Dr C when he's away". Looks as if we cool our heals until the appointment to see the good man in October.

The following Wednesday night as I took her shoes and socks off going to bed I noticed both feet were very hot and pink; both measured 38C. There was no tingling or burning sensations although both feet seemed to her to be moving about; they were quite stationary. Her body temperature according to her ear probe was 37.1C.

She had frequently mentioned that after 2pm each day she lost the capability to do very much, sewing, reading, general mobility. On Thursday 24th July we decided (without speaking to any professionals) to increase her 2pm meds to see whether there was any improvement over a week or so.

A Sinemet 250/25 at 2pm has been replaced with a Sinemet 100/25 and a Sinemet CR 200/50. No other changes were made.

Now, Sunday 3rd August, she has experienced no benefit she says. Instead, other problems have developed that may be completely unrelated to that meds change. The following day, Friday, she called for help when her left leg failed while she was at the linen cupboard, holding on to a shelf to support herself until I reached her; not unusual  though. Then on the Saturday night going to bed we noticed a fiery red rash right around her right ankle, perhaps a little on the left; the right foot much warmer than the left. There were no bumps and although itchy, she had not scratched so the skin was intact. She blamed the rash on an overly warm room at Wild Dog Respite that day. The next day we went to the Club for lunch but the place was packed so we went to the shopping centre for fish and chips. By Monday the rash was still there, perhaps fading a little; I asked at our chemist's for some anti-itch cream and when I displayed some photographs they suggested she see a doctor. That afternoon Dr I. was away but she was able to see another late in the afternoon. In discussing changes in diet, medication, clothing and the like we said there had been none (completely overlooking the 2pm meds change); the only thing I thought of was the injected dye used for the MRI over a week earlier. Since the rash was fading she was advised to do nothing about it, but to return if it worsened or failed to disappear. Perhaps the rash was due to the high temperature of her feet some days previously? A large bruised area on her left calf had appeared along with the rash. She was unable to remember bumping her leg. Faint signs of the bruise remain.

After breakfast last Thursday she felt too unstable to stand, there was severe burning in her left leg and said there was a haze aver her vision. Following her 10am meds she was very sluggish and the "haze" was as if her hair was over her eyes so I helped her to bed. At 1025 her blood pressure was 110/60 and pulse rate 78 so I raised the foot end of her bed. She slept until 1245 when her BP reading taken on her left wrist was 103/58 62; right wrist 119/73 61. When she rose a few minutes later her left leg had pain down its whole length.

Early Friday morning she woke me 3 or 4 times by yelling and snoring/gasping. She nearly fell off a chair in the sewing room mid-afternoon when she fell asleep. At 1500 her BP was 120/70 75. At 1600 she was asleep in her recliner.

Saturday was at Wild Dog Respite. She was able to knit without wearing glasses all morning but in the afternoon was unable to play Rummy Cubes because she was unable to comprehend what to do, being able to see the words but not knowing what to do with them. She says between 2pm & 6pm each day both her vision and thinking are "fuzzy".

Both of us are very weary and out of sorts today. After 2am meds this morning she was stressed and both legs were cramping. I took her night nappy pants off a little after 3am for her to use the commode, much more pleasant than filling the pants while she was awake. She thought the Circulation Booster, the TENS machine for feet, might be of help for her painful legs. The device has not been used in ages because she decided that her shaking legs and feet prevented it from working. About 4am I located the machine and its power supply ("lost" independently). She noticed very little stimulation through her feet so I attached the sticky pads to her legs.

Every day last week, when she was able, she sorted through her stuff in her sewing room, the intention being to returning the kitchen table to a state of bareness. We finished on Friday, furniture was relocated to give her more open access to her laptops and sewing machines.

She now uses another type of nappy pants at night, ones that have very "sticky" tabs that look like carborundum paper. I last ordered the middle sized ones because we had too many "accidents" with the largest size; accidents still happen though, sometimes  I fit them very well, sometimes not so well. To fit them, I seat her on the commode, wheel the commode to the end of the bed, have her pull herself up by pulling on the bed end while I slip the opened out pants beneath her bum, then when she collapses back onto the commode I loosely wrap the "belts" around her and loosely pull the front section up between her legs. The off the commode, onto the bed, raise the bed, place an extra absorption pad into the pants between her legs before jiggling all the bits into place as firmly as possible. Apo pump changeover occurs after 730am just before Wild Dog personal care person arrives to shower her.

I'm looking forward to a quiet night.