Chapter 303 - Further Along the Way

By early afternoon she finds her hands no longer move very well, that is, her fingers are unable to manipulate thread, wool, fabric, needles as easily as she wishes, as she had always been able to in the past. Some time since she has done any machine embroidery. At the moment fabric is cut into long strips maybe 1 centimetre wide, then knitted into panels to make a bag; an idea that came from the Sheltered Workshop.

Last night I found her sitting on the side of her bed, too afraid to move to undress and get into bed. I queried whether she was on the verge of a panic attack; she thought she was. She says as 9pm approaches her sense of balance goes and she fears falling. When I checked on her about 9:15pm she had sweated so much that the back of her head and neck were  wet and very cold so I switched the bedroom heating on for her. She soon finds that too hot so keeps checking with me that I have turned it off again. Not that she wants to go to bed so early to find bed uncomfortable, especially when she attempts to read a Mills & Boon for entertainment. Strange she doesn't ask for a DVD in the TV. I suggested to her that I can wheel her new recliner chair into the bedroom and that may be more comfortable for her.

On Wednesday 17th July I noted in the diary that at 10pm she was sweating excessively, even with no heating on, even though outside temperatures drop to -5 or -6 this last week. That same day she had her third B12 injection, seemingly the last until a 6 monthly check-up in a few months.

Although I haven't bothered to record the number of her nightly visits onto the commode, I am sure the number has reduced from 4-6 to about 2 (maybe because of not taking Metamusil in the evening?). I am sure of this because she needs assistance to stand and swivel 90 degrees to sit on the commode; it is that close to the position she gets out of bed. She needs help because her feet don't "work", so I need to pull her arm to help her stand and turn. Usually I am asleep, needing several calls from her to wake me, partly because my CPAP makes a little noise and I am deaf in one ear.

Friends, on their way through to the south, visited us on Sunday and Monday. Their presence and catching up on their news provided a welcome interlude for both of us. We never have much news to trade for theirs.

The contact from our PD Group has not called us about the person she knows that uses apomorphine. Perhaps another dead end. Where are all these apomorhine-using PWP's hiding?

Chapter 302 - Damp, Grey and Cold

I'm up early this morning, some Wii Fit, breakfast and a mug of green tea. She dozes in bed, reading light on, Mills & Boon novel dangling in her hand, surrounded by pillows, her trolley and her commode close to her bed. Somewhen after 4am she called me to help her onto the commode, "I can't feel my feet" she said. She sat on the side of the bed, her feet dangling, unable to "find" her feet to place weight on them; she was simply unable to stand to swivel her bottom 90 degrees to sit on the commode. I waited then helped her back into bed. I dozed off with a bud in my ear listening to BBC news. Must have been about 5am, then 5:45, we repeated the same exercise. I'm sure it was three times, but I'm hazy about it, definitely twice. The last time she pondered whether she needed to use the bathroom toilet; instead she made some noises while on the commode. Last weekend her bowels were loose causing her to visit the toilet a couple of times around 1am. Again at lunchtime on Sunday. She fears an "accident" happening.

I'm unsure how many times she uses the commode after her 10pm meds, usually in bed before then these days. During the day she sometimes needs assistance getting off the toilet, maybe once or twice. She has been bothered daily by stomach pains, wind, and passing "pebbles" as she calls them. On Wednesday while at Dr Flower's receiving her third monthly B12 injection she seemed to have no problems when asked, so I piped up mentioning the stomach pains. Together, she and the doctor concluded that the pains must be due to her long term diverticulitis, although the doctor asked a lot of leading questions. One interesting item arose from the discussion - she would be better served by having her Metamucil laced fruit juice early in the day so that her stomach was not so actively processing the fibre well into the evening, that such will tend to produce full bladder as well. This may explain why she has tended to urinate more frequently after going to bed than during the daytime, a matter that has long puzzled us. Surprising what is learned from a doctor prepared to listen and discuss daily routines.

She has begun to react more normally to the cold weather, sometimes asking me to switch on the heater in the back room. Although last Wednesday about 10pm, meds time, she was sweating without any heating being on.

She frequently begins to panic breathe, snorting through her nose, often times when getting into the vehicle when going out, as last Monday on the way to physio. But also frequently at home should she need assistance to rise from a chair and walk. When her legs are not responding well she fears she is about to fall, so she panics. These events do not last long, at least as far as I can tell by external symptoms. How she feels inside is another matter.

A friend of mine was here recently. He noticed her wobbling and shaking while she was moving about the kitchen. This must have been the first time he noticed her physical instability (he has not often seen her at home and then only when she has been seated). He later wondered to my why the lack of dopamine causes the PWP to tremor when logically the lack of neurotransmitters should cause loss of movement. I tried to explain in layman's terms my understanding, which probably is not correct anyway. The general public, like doctors, tend not to see PWPs acting naturally in their natural environment.

The lift chair was delivered on Wednesday. Having been cautioned that such a chair may trap a person should the power fail while the leg support is raised, I was very pleased to learn that there is a battery backup built in with sufficient capacity to return the chair to a normal position. Saves me thinking about a UPS. Raising her legs on the chair takes away her leg and feet pains, although I had expected her to have her feet raised most of the time. She now has to move to the conventional chair to use the Circulation Booster and the Pedal Machine.

While discussing her general health while at the doctors made me look at her more closely, making me realise how pale, perhaps pasty, her face is. I hope this is only due to our lack of going outdoors. Dr Flower checked that she continues taking Vitamin D supplement, so her appearance was probably noticeable to others. I realise now why all those older than we in this village are rarely seen out of doors; age rather than weather.

She continues on the same meds regime.

Chapter 301 - A Little Shopping

About noon on Monday, last week, she told me that her "balance was way out of whack". Then at 1pm she said she had mistakenly taken her 2pm meds an hour early; no real explanation why. I think she returned to the schedule at 6pm. We have been advised for her to remain on the current schedule (where she takes 3x1.5mg Sifrol each day) until she next sees the neuro in Hot Air City. By 4pm that same day she complained of itchiness across her lower back; I noticed some redness when I looked. Still itchy the following morning so she applied some anti-itch cream and she has not mentioned the problem since.

On Thursday last week a neighbour called in to reward me with a bottle of red for having helped her husband (has lung cancer) assemble a bathroom towel warmer. She rose from the kitchen table to show the neighbour something in her sewing room, stepped backwards, banging into the wall, almost dislodging some hanging art work frames. She said later that if the wall hadn't been there she would have fallen.

Friday night was very cold and I can't remember whether she said her feet were cold or hot; anyway, I knelt down to feel her feet, the left was so warm it almost glowed whereas the right one was ice cold. I pondered why the right foot was so cold before realising it was the left that was the odd one, even though there was no tremor in either. She had been seated for some time completing her puzzle magazines. Then on Saturday morning she shopped for some fancy wools to knit scarves. She complained that her left foot became very hot and several times she needed to stop pushing her walker while I retrieved her left sock which tended to slip into her show.

She has frequently mentioned that the tingling and pain in her feet and lower legs eases when her feet are raised. She frequently wishes to sit with her feet on pillows; and in bed her feet are pain free while the remainder of her body becomes uncomfortable, thus she is torn between laying down and sitting up. We had noticed a cheap recliner chair in a junk mail magazine so Saturday afternoon we drove to the furniture store on the edge of town, only to find the store had closed an hour earlier. Yesterday while she was at respite I drove back to the furniture store to learn they had a sale on. I inspected the chairs available then said I would return with her next day. Today, after sitting in five chairs, manipulating the controls, she decided on one (not quite the cheapest) which she thought gave her the most support down to her ankles when the leg support was fully extended. The seat squab also tilts to help her rise to a standing position. About an hour before her 2pm meds she surprised me by appearing "not quite with it" in using the controls and I had to prompt her to raise or lower the back, the seat and the leg support. She did not seem dazed, more absent minded. We also briefly looked at a powered bed and she needed to be seated on her walker. Her new chair will be delivered next Wednesday; it's in stock, but the store insists on having the electrics checked before delivery and Tuesday is Respite day.

After leaving the furniture store we stopped at a newsagents to buy her puzzle magazines. She surprised me  this week by suggesting she will stop completing the puzzles each week. I don't think that a good idea, for the task exercises her mind and she only sporadically attempts the free Lumosity exercises since she allowed her subscription to lapse. She has been completing those magazine puzzles ever since they first appeared in the newsagents, possibly more that 15 years ago. She says the stories/articles are rubbish now (I had always thought that).

Sunday saw us at the Club from 1030am till 4pm with son and family from Big Smoke. She coped quite well (as far as I could tell). Around 2pm she decided she needed to visit home urgently but I talked her into using the disabled loo at the Club. Afterwards she said she would not have made it home.

About 2.30pm on Monday she said she had that lump feeling back in her throat. She continues to break at least the Sinemet 200/25, maybe others, in order to swallow her meds.

She seemed to enjoy her day at Respite yesterday.