Chapter 421 - Some Improvements

Last Tuesday I gave her what she called a stale waffle (it had been in a sealed cellophane package for about a month) smothered in malt for breakfast (she enjoys that sort of stuff) last Tuesday. But because the muffin crumbled like cake she only had fruit juice (containing Movicol) and a Yakult biotic plus a Panafcortelon tablet for her appetite. The instructions say "with food". By 9:45 she felt light headed and bilious which I interpreted as caused by insufficient food with the pill. After some chocolate chip biscuits & potato chips she began to feel better, so late morning I took her shopping for some flower seedlings and bags of soil followed by lunch at MacDonald's. She had been hounding me to take a small box of coins (she collects my loose change) so we called into the bank as well, the coins totalling $204.70. At home we spread the soil in our raised garden bed and planted the seedlings.

Also on Thursday, she noticed styrofoam containers of baked chicken and vegetable dinners in the glass case of a shop in the shopping centre, so I bought one for her. She enjoyed it, so on Saturday I bought another three for her.

I discovered the easiest way in which to fit the cast on her left foot was to first fit it on her leg/foot, tighten the velcro straps as much as possible then have her stand in the Sara Stedy then tighten the velcro straps again. At our Thursday visit to see Physio A progress had been made but insufficient to warrant making a new cast, so the toe area was padded a little more. The cast has been left on her left leg from about 0830 to evening without ill effects, although she sometimes mentions tingling (both legs) and throbbing (left leg). Perhaps tonight I will remove the cast at early evening, replace it at lights out around 2200 and see how long she can tolerate it during the night.

Chapter 420 - Loss of Weight

One day this week  a Wild Dog carer exclaimed to her "You've lost a lot of weight since I last saw you!!!" and that had been only several weeks ago. The carer said she would be there to help put her on their seated scales when I collected her from Respite. Wild Dog management must have been informed and everyone at Respite was weighed that day. Perhaps that is a  practise that should be done regularly? Anyway, she asked to be taken to the disabled loo so she could use the rails to slide from her wheel chair onto the seat on the scales. The result - 51.2 Kg. Back on 29th March the Wild Dog carer/physio had her stand on our bathroom type scales while grasping the rails we have in the garage, hardly accurate since she held onto the rails but the reading was 58.8 Kgs. So in not quite 2 months she lost at least 8 Kgs!!!

Recently she has not been completing her evening meal. At first it was a matter of not eating vegetables because of chewing and swallowing difficulties. But then she began leaving the meaty flavoursome parts as well.. I suppose many would say I feed her too many frozen dinners but I think such are more nutritious than anything I prepare. She never wants to go to the Club anymore because the food is awful there these days. Lately she is never hungry. Often she has to be harangued to leave whatever she is doing to  to even taste a meal. So I took her to the doctor's on Thursday. He suggested this may just be another PD problem. It may well be so; although other Parkies lose weight, she has never done so. Her sense of taste is lacking. I wonder whether her sense of smell has gone as well? Dr I. gave her a script for Panafcortelon, something given for anorexia, and to return in 10 days. She began taking one a day with breakfast on Friday.

On Thursday physio A at the hospital fitted her left leg/foot with a removable made-in-position cast. When finished she did a 3 step walk with their fore-arm walker about 6-7 metres. That cheered us a lot. At home with our fore-arm walker though she tends to stub the toe of the cast, does not move well at all & I'm afraid of her falling. I was asked to cycle the cast on and off at 1, then 2 then 3 hourly intervals. So far that hasn't been possible; very difficult to tighten the cast with velcro strips so there is minimal gap in the cast at the arch of her foot but even impossible in the afternoon when her foot is much less pliable. This morning I had her pedal her machine for half an hour before making a second attempt to fit the cast. And left on for too long makes both legs throb. Yesterday I asked the respite staff to remove the cast at 11AM. Today, after difficulties, the caste was not fitted until nearly 10AM so I may leave it on until mid-afternoon.

She continues to easily distracted by "little" things; labels on items, cash register dockets and often stops an activity to sort out things she sees misplaced. After one of the younger Wild Dog carer's introduced her to that type of sports bra without clips she decided to remove the metal clips from all her old bras and stitch them together, creating a pile of mess in her sewing room without, I think, completing at least one. Over an hour ago I made her a very large mug of Milo, custard and ice cream which she says she likes, although only a 1/4 has been drunk. And it's almost lunch time. She is currently engrossed in threading her sewing machine to possible sew together the pieces of a calico Golly Wog, although I had to advise her her that she needed to fill the arms etc before stitching them closed. She is able to detect that something is wrong with her sewing efforts but is unable to resolve the problems. Some weeks ago she decided to sew up an apron 1/2 an hour before leaving for Respite. Just a "quick job" she said, perhaps years ago when she was able; anyway, that "quick job" took many days of sewing, unpicking, trimming bits with scissors without ever completing it.


This morning following instructions from neuro Dr F. her Duodopa flow rate was increased to 5.2 mL/hour.

Chapter 419 - Slow Changes

Duct tape corrected the sole problems on the physio boot.For three nights she wore the boot to bed on her left foot, loosening the fittings or removing it completely because of pain (in her right leg) or throbbing in both legs after 3 hours or so. One night I removed the boot as she showed signs of a panic attack. Then for two nights the boot remained on until the next morning. Physio A decided this was not very productive. We were loaned a plastic AFO to wear on her left leg during the day, while wearing sneakers, as her usual shoes are of a comfortable type lacking any support across the top of the foot. When I took the AFO off after one of her days at respite I found a large red "rash" at the position on her upper calf had been covered by the plastic and velcro of the AFO. Some foam on the AFO and less tightening of the velco removed this problem. Physio A. visited us at home last Thursday and worked out a routine for her to stand from the wheelchair to the fore-arm walker, then 10 or so stand on toes, followed by some "marching on the spot" before sitting again. Physio A and I were both surprised that she was able to keep her left foot so almost flat on the floor. Unfortunately, since then she and I have been unable to reproduce such satisfactory results.

I have improved the beeper board, adding an electronic counter to it so that whenever the beeper sounds due to her left heel "touching" the floor the counter increments by one. The whole contraption seems to give her a degree of achievement in that the beep provides unequivocal feedback of success as well as the counter  showing the number of successful actions. Quite a lot of force is needed to force her heel to the floor, the amount of force depending upon the angle of her shin to the floor. If her shin is vertical I am unable to lean heavily enough on her upper leg to actuate the beeper without causing her pain. So changing the angle of her shin to the floor provides an adjustment of the force required; I position the board so that she is only just able to lower her heel to cause a beep.

One morning with 3/4 of an hour to spare before respite at Wild Dog she decided she would sew up an apron, for that day an apron parade was planned. She failed to finish it in time, she protested strongly about having to leave it, so she took an apron she made years ago. The new apron is still not finished, almost a fortnight later. The new tablet I bought for her to play word games is not being played. One day she bought two jigsaw puzzles, one of 1000 and the other of 1500 pieces cheaply at respite. I have helped her with one but the edges are incomplete many days later, although I must admit it is very difficult.

I am annoyed when she is distracted by an object in a cupboard, drawer or fridge then proceeds to rearrange the contents of same so that afterwards I am unable to find things easily.

One afternoon we forgot to replace the Duodopa cassette, running it dry by 10PM. We realised that during that evening her leg shakes were minimal. So the following day we "forgot" again on purpose; same result. Then on the third day the cassette was replaced about 4PM; again a shake free (well almost) evening. The flow rate remains at 5.0, planning as per Dr F neuro to raise to 5.2 mL/hour next weekend.

I have a group picture of us and the kids taken when we must have been in our early 40's, in a park in Batman City; she was so pretty then, just to bring the image to mind causes my eyes to sting.

Chapter 418 - Unstretchable

The boot loaned to us for her left foot is ineffective because when the velcro straps are tightened the soft padded sole comes away from the hard plastic sole, thus there is little pressure on her foot to stretch her leg muscles. Physio A. provided some additional strapping to overcome the problem. Most days I have her do sit-stands while she is on the Sara Stedy; 10 "stands" from the seated position, count to 10 before sitting again. Physio A says the resulting slight breathlessness is good for her.

I had been given an appointment card for 10AM for last Wednesday, actually intended for 9AM except the physio wrote the wrong time as we were debating on the most appropriate time at the conclusion of the previous appointment. Over the phone an appointment was made for the next day, Thursday. Physio A. thought her foot had improved in it's range of movement although I doubt there has been any extra movement. Anyway, with a slightly modified boot and further exercising perhaps by next week there will be improvement. I wonder when a halt will be called or additional botox injections suggested.

Physio A. had noted our challenge using the Sara Stedy to transfer her onto the loo due to the distance she needed to lower herself. On Thursday Physio A. produced a height extension piece to place beneath the seat on the loo as well as a pair of moveable hand rails, all of which are compatible with a bidet. These items are loaned to us to try out. The height extension removes her fear of sitting on the loo from the Sara Stedy, the best thing that has happened since we began using the Sara Stedy because my right arm has begun suffering from RSI symptoms, very painful in the forearm when doing subtle movements like moving a mouse etc. I think my right hip is improving as well. She now accepts being transferred from the wheel chair onto Sara Stedy by her own strength, transported to the loo, transferring from the Sara Stedy onto the loo, again with little assistance from me and then reversing the whole procedure. Her right should has improved; I know because she no longer complains about pain in it; presumably because she pulls/pushes equally with both arms rather than lop-sidedly.

Her Duodopa is maintained at 5mL/hour, connected only between 0600 and 2200 and a Sinemet 200/50 at 2200. Her glaucoma eye drops are applied each night and at times each day her eye lids are sprayed with TearsAgain. Her dry eyes are aggravated by her need to have a small fan blowing on her face throughout the night, although she sometimes remembers to wear eye shades. Body temperature regulation is becoming more of a problem; even now as the weather is cooler she often needs to mop her face of dribbles of sweat and her feet and lower legs alternate between being hot and pink or ice cold and mauve to my touch. Women from Wild Dog Care sympathise with her about "hot flushes" (they are mostly of such an age group; she isn't at 73) without telling them it's the damned PD, just another of the symptoms. I heard someone bemoaning the fact that her aged father, at 80, had just been diagnosed with PD; I sympathise with the father who assuredly has other issues that will cause his death before PD impacts his life greatly, the daughter lacks understanding.

Yesterday afternoon as we were about to change the Duodopa cassette she discovered that the screwed fitting on the tubing had leaked onto her clothes. There seemed no obvious cause. I was concerned that damage may have occurred to the Peg J tubing.

She continues to indulge in impetuous activities. For instance, the card board box the loo height extension and rails came in was left in the lounge room until my order for same arrived in the next day or so. Instead of asking me to take the box to the garage or elsewhere, I found her re-arranging her china cabinet to find space for the box. She diverts herself very easily from an activity to re-arrange the contents of cupboards and the fridge. She is no longer "humming" (tunelessly) as mush as she was and I find when suitable music is playing she stops altogether, or maybe I can't hear her. She finds replying to emails a chore, preferring to ignore questions about her condition.

Time to have her exercise with sit-stands on the Sara Stedy.