Chapter 503 - Reality

At last visit, her neuro gave me a script for Symmetrel, other wise known as Amantadine,  one 100mg capsule at 0800 for two weeks, then one capsule at both 0800 and 1200 for another two weeks then for the 5th week one capsule at 0800, 1200 and 1600. On the table of the plan he gave me is written "Continue for at least 3 weeks if tolerated".We are now at the end of this "trial". Suddenly toleration has disappeared. During this last week the Wild Dog carers began noticing changes in her behaviour. One morning she complained of throbbing pains in the big toe of her left foot yet when I rubbed Voltaren onto it she did not complain; I wriggled all her toes, pressed on the toe nails, wobbled the foot about (this is the frozen foot she can't stand on) and when asked she said she felt what I was doing but without pain; I concluded she had experienced a form of phantom pain experienced by amputees. She frequently told me one of her shoes had fallen off; it hadn't, it remained on her foot. She began noticing "people" outside the house, at the front door, then she began speaking to them inside the house. By Friday evening she was holding conversations with the people, asking me to do things for them. On Saturday morning I did not give her the Symmetrel at 0800 but I did give them at 1200 and 1600. I had decided to back off that medication as soon as possible. Today, Sunday, I only gave her the one at 1600.

Yesterday after I refused to make "visitors" a cup of tea she removed two mugs from the cupboard and going to the kitchen sink was about to make tea but came to a confused halt when she seemed to loose the plot, so handled the mugs for a few minutes before placing them both in the dishwasher; task completed I suppose. For several days now she has sat for ages "winding up" invisible threads (invisible to me anyway), on invisible spools or into invisible bundles which may then be wrapped in tissue. The threads seem to adhere to her fingers, causing some frustration. She frequently wishes to wipe up yellow muck she sees on surfaces.

Last night as I put her to bed she looked over my shoulder, eyes wide, saying loudly "You may come in", frightening the life out of me. For one moment I thought her comment was real. I have been going to the front door to open it to humour her sometimes when she says there is knocking there or the door bell has sounded. She mostly has conversations with her sisters, our daughter, her Aunt H. Although an amputee and over 90 years Aunt H. seems to get about quite a lot. I mentioned last Post about the KISA phone; tonight as I helped her from the wheel chair to the Sara Stedy she asked for her phone; "What for?" I asked; "To ring Mum", then "......Dad" then "......Aunt H.", as her mind processed the facts that the first two were dead (Dad died in 1963). Those couple of lucky people whose mobile numbers are locked in her KISA may be in for some unexpected calls. As I continued to wheel her towards the bedroom, I looked at the embroidery I did of her as a 16 year old and tears came to my eyes.

Today the FitBit on her right leg recorded the least number dyskinetic kicks from her right leg since I began monitoring her leg with it. No green bars indicating high intensity, just a few brown low intensity ones between 0800 and 0900, probably when I attached it to her leg. The only day since beginning the Symmetrel clear of dyskinesias. I wonder whether she will be able to evaluate her quality of life and compare a day of excessive dyskinetic activity and a day of Symmetrel induced hallucinations; if she can I suspect she would opt for days of hallucinations. But I can't; cleaning mess, wiping bum holes, tipping turds out of pans, cleaning the toilet, wiping up spit filled tooth paste blobs, massaging feet, showering and drying, dressing a body that is unable to move smoothly, fitting incontinence pants and pads then removing them when soggy, sliding a bottom along a transfer board, controlling medications, washing soiled spots on towels and clothes, putting drops in red weepy eyes, even an enema or a catheter. All those physical things I can cope with after an initial cringe or two but a confused mind is too close to what makes us intensely human.

I first experienced wide awake daytime hallucinations when we visited her 2nd cousin once removed in a country town years ago; he had problems with bush fires just outside the windows of his house. Another 2nd cousin once removed had fly wire doors on all the rooms in his house to keep the rats out. One of her great grandmothers(who we never knew of course), according to her death certificate, died of "softening of the brain".

POST-SCRIPT Monday morning: Yesterday evening I gave her one of our regular meals; a fillet of grilled salmon, half a slice of grilled avocado, grilled tomato and a heated slice of "bubble & squeak" (a frozen potato patty including a few peas). Breaking the salmon into flakes, removing the peas to the side of her plate, eating pieces of the tomato, mixing seafood sauce into the whole. Large pieces of salmon fell onto the floor. The whole was stirred with a knife, sometimes a little was transferred to her mouth either by fork or knife, even using the handle of the knife. Her fingers became sticky, wiped them on a tissue. Then lumps she wished not to eat were wrapped in tissue for me not to notice perhaps. A trip to the toilet interrupted eating. Then she was uninterested in eating any more. I tempted her with mango and ice cream. Once she found the taste to her liking the mango was eaten from a fork then a spoon was used for the melted ice cream. As I watched I saw the behaviour of a child disinterested in the meal.

I only gave her a Symmetrel  at 1800 last night. Hallucinations were on the wane. She watched some episodes of Heartbeat on DVD in a disinterested fashion, no longer interested in reading Mills & Boon books on her eReader. A few questions about visits from invisible people. During the night she woke me a couple of times by talking; in her sleep or not I know not. Replacing the pump cassette at 0620 and flushing the side tube did not wake her. She continued snuffly and snorting. Her left leg was bent and off the new foam leg support, her hands holding beneath her upper leg. I saw that she had scratched her right calf where there was a streak of blood. I will not give her another Symmetrel unless the hallucinations  have waned considerably.

Chapter 502 - Ramblings

She turned 76 last Wednesday. I was able to throw my dressing gown over my dripping nudity when one of her presents arrived at the front door while I was showering. A new mobile phone for her which I would have bought anyway; just nice that it arrived on her birthday. That day was my respite day as well as the monthly carers' meeting so I returned with two bunches of roses, one white, one red. She was unimpressed about either present; perhaps slightly puzzled about the phone. I jammed all the roses into a large vase and afterwards she was intent on removing all the leaves on the stems. I discouraged that.

The phone is a KISA brand, limited to a maximum of 10 stored numbers plus an emergency button. Apart from the numbers for myself and 4 family members, only one friend's number, the Wild Dog Carers and the doctor numbers have been included. That leaves two buttons without a stored number for the unlikely need to call other friends. For each stored number I have had her call, partly to train her to use the phone, partly to "break the ice" because she no longer has the desire to speak on any phone; perhaps she has little to talk about, is unable to speak clearly or comprehend what others say because often her phone calls are rather short. This phone is very easy to place in speaker mode at quite a decent volume. Our CB radios have retired to a cupboard so we rely on our mobile phones now, being more reliable since her simple press of a button with my name on it effectively locks in a call to me whereas sometimes she pressed the CB radio transmit button too briefly or not in sync with what she may have said for me to detect a squawk. Since receiving the phone only one problem with it has happened; on the rear is a white button to call Emergency and by accident she has pressed it twice. I have duct taped a small piece of clear plastic over the button. Little effort is required to remove the plastic should the emergency button need pressing.

Of late her left leg tends to bend upwards at the knee by the time she wakes of a morning after laying on her back all night. It is her left foot/ankle that remains straightened and cannot be walked on. Sometimes she is unable to straighten the leg and I have needed to place downwards pressure on the knee. Rather than take her to a physio at the hospital, I took her to the GP who seemed unimpressed with the photos I showed him. We learned that he is leaving to take up a position in Batman City. When in bed she always wants a pillow beneath her left leg, even though the bottom of the bed can be raised. On a whim I ordered a shaped foam plastic cast in which to lay her left leg. Another experiment.

The local equivalent of Dance for Parkinsons  begins again next Tuesday in a church hall. She looks forward to attending again. She has pleasure in doing the movements, even following along to the the classes we have on DVD. She is no longer keen on attending the Thursday ladies group in our village hall. Her knitting attempts have been put aside and I wonder whether her problems being unable to proceed more than a few rows beyond casting on is a possible cause for not attending. She has not wanted to go shopping on Sunday mornings lately, saying there are too many people there.

The neuro's plan for varying the duodopa dose rate up or down while increasing the number of Symmetrel each day is now entering its 5th week when she will take Symmetrel at 0800, 1200 and 1600. From now on when dyskinesias begin the dose rate will be reduced by 0.5 mL/hr each week. To date I see no obvious relationship between dose rates and dyskinesias. I am about to print off the last few weeks worth of FitBit charts to send to him.

Although I have not seen the report from my recent MRI scan, our GP commented as follows on a referral to a neurologist "His CT Brain showed mild atrophy of cerebellum. MRI showed generalised cerebral atrophy with wide spread T2/FLAIR hyperintensities likely due to chronic small vessel ischaemic disease. There is a 2cm x 1.7cm x 2.1cm right occipital arachnoid cyst on MRI." My appointment is several weeks away.

Chapter 501 - Experimental Changes

The neuro Dr F asked that she take one Symmetrel 100mg each day at 0800 for a fortnight and when dyskinesias began the Duodopa flow rate was to be increased from 5.5 to 6.0 mL/hr for the first week and to 6.5 mL/hr for the second week. The fortnight has now passed without me seeing any changes of value; some days are dreadful, some good. The instructions were to increase the flow rate once afternoon dyskinesias begin. Unfortunately, on some days the dyskinesias begin in the morning and carry over into the afternoon, so I have tended to increase the flow rate as soon as I see her legs kicking, if I notice of course or she tells me; we have lived with this for so long we tend not to notice. As of yesterday, Sunday, the next step in the experiment began; higher flow rates and a Symmetrel at noon. I am about to post 14 days of FitBit traces, suitably annotated, to Dr F. There is just no way I can verbally describe the day to day changes. I record in my note books the changes in flow rate and the taking of Symmetrel and casual observations but it is just too much information to see trends. At least the FitBit provides a "picture" even though the time and step scales are coarse and how an irregular jerk or fling of her right leg (where the FitBit encircles her ankle) relates to "steps" I don't know or care; just that the trace gives an idea of timing and magnitude of her leg movements. The neuro had contemplated having her in hospital under observation; perhaps my comment that was hardly a real world situation may have dissuaded him; perhaps that may be necessary should nothing come of these present tests.

Yesterday, a beautiful windless spring day, I took her shopping early. Her dyskinesias bothered her so much she had no enjoyment while out. I bought her a craft magazine then we came home. Beginning in bed in the morning till bed at night she had sensations of her legs "twisting" (dystonia?). For most of the afternoon she sat outside knitting on the rear patio. She is tolerating the FitBit on her right leg much better so yesterday three periods of dyskinesia were recorded; from 1000 for 2 hours, from 1300 for 2 hours and from 1830 for 4 hours. The latter was mostly in bed while reading a Mills and Boon on her new eBook reader now mounted on a small TV mount on the wall above her bed. The mount eliminates problems of her holding the reader. She reads almost every night when in bed. I may install a similar mount for her on a wall out in the living area.

On another front, she saw her opthalmologist on Thursday 20th September. He asked that no Ganfort be applied to her eyes until 5th November (Simbrinza had been discontinued on the advice at the Eye Clinic at Hot Air City). When I asked him whether allergies to glaucoma medications happened often he replied "All too frequently". Siguent Hycor 1% was prescribed to be applied to her eyelids each night. On that same day, the funeral for our Village's original warden was held at a small town on the way to her eye appointment so I attended for half of the church service; she was not up to going in so remained in the car.

And on yet another front, I had another of my "funny turns" when I have difficulty maintaining my balance and walking; that feeling of too many glasses of red plonk swallowed. That was on Monday 17th September. Fortunately my driving does not seem to be effected, only getting to and from the car, for I was able to make an appointment with our GP. On standing and turning to leave the doctor's room I tended to continue turning, almost fell, so I was asked to sit in the waiting room for awhile. Next afternoon I had a CT scan of my head. The following Wednesday our GP showed me the scan which suggests some atrophy of my cerebellum although the accompanying report says "No acute intracranial pathology". Probably the words "no acute" are code for "no danger of immediate death". The GP describes my problem as Ataxia. Late last Friday afternoon I had an MRI scan up at the Highlands Town and now I need to see a neurologist. Perhaps I am reading too much into the MRI images being handed to me without an associated report or CD containing all the files. The receptionist at the scanning place went looking for a CD but returned saying that if there is one it can be sent directly to the doctor.