Progression Two

Occasional notes in the life of a Parkinson patient & her carer.

Sunday, May 31, 2009

Chapter 167 - Changing Plans

I had intended we travel north to Cane Toad Land for my mother's 88th birthday due soon. We are both rather concerned about the Pig Flu scare, unwarranted I'm sure, yet we are neither keen to travel. She fears any sort of ill health that will upset the stability of her medication and I am simply not enthusiastic anymore. We had intended to stay in motels rather than the van which needs some maintenance before we use it again so I procrastinate. Then a couple of days ago I was disabled with a gut problem, I suspect, from handling garden fertiliser (the stuff full of excrement from cloven hoofed & feathered beasts). I tell myself that I did not retire to garden so it's my own fault. Then while embroidering an image of Emerald Lake, BC, Canada, I recalled memories of a painful, stressful, less than satisfactory train trip across Canada in 2004 (when the photo of Emerald Lake was taken). That was the trip on which we discovered panic attacks, beginning our first night in Vancouver. I now appreciate, now that she is no longer plagued with those symptoms (well, not quite so noticeably perhaps yet her stress threshold has difficulties coping even now) how she may have felt, forever being driven to meet tour schedules and seeing breath-taking sites when her mind and body must have ached to crawl into a dark warm space away from crowds and vehicles. That morning at Emerald Lake I remember encouraging her to walk with me a short distance from the coach along a path near the lake, just for the exercise, and I took some pictures, one being the rowing boat with the lake & mountains as backdrop that I embroidered this week. And I remembered all those other times when travelling, that Canada trip as well as all the others, when she felt miserable and I nagged her to show interest in views, scenes and whatever. So I am now discouraged and depressed.

Early in the week while having a toe job done she drew the attention of the chiropodist to a small black mark beneath the nail of her index toe (if we have "index fingers" why not toes?) on her right foot. He suggested she keep an eye on it for no more than a month by which time, if only a mark, it will have moved forward, otherwise, to have it checked by her doctor. When we arrived home I took macro close-ups of the mark so that her Caring Physician can see it better when she sees him next week (was meant to be last Thursday but she was bumped). And of course, she searched the Big-Library-in-the-Sky to discover that it is common for people with a history of melanoma to have more appear beneath finger & toe nails. I have not researched the matter so can only say "Why the hell should that happen?"

Long time friends of ours passed through early in the week on their way to the recent big water in the Centre and other places north & west. Yesterday a message on the answering machine that other friends had just returned from Ireland. She expresses little interest.

Had I mentioned that the ladies at her KYB group had changed the meeting time from morning to afternoon so that she could attend when she is more able to cope? Last Tuesday the time clashed with the toe job and I noticed her struggling with those dogmatic questions a few nights ago. Just more stress.

In the previous chapter I forgot to mention her stress at Central. The toilets on the country concourse are being re-conditioned (as they were on our last visit) so we had to go to the lower suburban concourse. She was happy to use the escalator rather than go back through the ticket gates to the lift. When I stepped onto the escalator to guide her I found it travelling several times normal speed, she froze at the top, refused to step on. Fortunately her cousin remained with her. An attendant guided them around to the lift, which was out of order, so she had to be assisted down another escalator.

She remains keen on Wii Fit which after about 60 days has turned into a bit of a chore for me. We bought a hula hoop to help her learn how to rotate her hips for that exercise but since I am unable to make the real thing rotate in order to show her how to do it, we wasted $9.

Sunday, May 24, 2009

Chapter 166 - Mostly Good Times

While living is comfortable there seems little to report and then the minor bumps I forget within a day or two. Perhaps that is how we are built.

After mass producing towel-toppers she decided to make an embroidered apron, with pockets, and trim around the edges, for a friend who is leaving our village. Even though he has been my friend, she thought a gift was appropriate. Then she made herself one as well. Now she is stitching a few purchased designs for no particular reason.

Within a week of 23andme receiving her saliva sample she received notification that her DNA analysis was complete and on line for inspection. They say she has the LRRK2 gene mutation. Search on line for what this means. In a way, this is a relief because over the years neurologists have questioned the nature of her PD and puzzlement shown by experts is disturbing. As a friend told us earlier this week "It's comforting to be able to put a name to it" he said as he was telling us that he has just been diagnosed with Pick's Disease, a "wasting away" problem of the front left frontal lobe of his brain (he had a Quicktime presentation of scans of his brain to show us) which is resulting in untreatable deteriorating speech, reading and comprehension problems. He has had this problem for many years. I am guilty of thinking poorly of him for his "personality defects". There are worse maladies than PD.

Her arm pains and numbness at night while sleeping continue to give her much discomfort, She frequently rises early for relief. There seems no relationship between this and exercising with Wii Fit and Sport. She often beats me at bowling and has made Professional status once briefly. She is still unable to do the Hoola Hoop. The hospital physio says she has improved out of site. We seem to be singing the praises of Wii Fit to all and sundry.

The funeral of a friend here in the village resulted in her cousin visiting us after the service. She enjoyed that. Then last Tuesday we trained to Big Smoke to meet another cousin. We sat talking at Central Station then retired to Paddy's Markets for lunch then returned to Central for our respective homeward travels. They would have come down here to stay with us for a couple of days except that she refuses to contemplate setting up beds in our garage since I have taken over the 2nd bedroom for embroidery purposes. I don't think they would have minded. After all, there are curtains across the roll-a-door.

Yesterday mid-afternoon she felt "off", needing to lay down. So she slept for well over an hour. She was ill at ease all evening, slight tummy problems and flatulence. Enough to discourage her from Wii fit exercises. I welcomed a night off. She seems better this morning, although she rose after her 6am meds due to her right arm.

Thursday, May 07, 2009

Chapter 165 - The Play Continues

If it wasn't for her enthusiasm, I may not have done Wii Fit exercising EVERY evening for the past 5 weeks. And I feel that I must continue for her sake because she has improved. I just tend to be lazy and in need of direction. Her frustration is frequently evident when she is unable to achieve much of a score with the Tilt Table, heading the football (I don't remember its name) and fails completely with the Hoola Hoop, only achieving perhaps less than 10 turns in either direction. Strangely, she excels with the "penguin eating fish" exercise with which I am mediocre and I am also driven mad by the theme music. She maintains her balance better than I do in the waist twisting exercises. Although it wrenches me when she shows frustration with the hoola hoop and tilt table. Strangely, she "burns" very little energy while jogging, and that annoys her, since she sees Wii Fit as a method to shed weight, even though I tell her balance improvement is much more important at this time.

I am sure she has improved her gait, I think she stands better and her confidence in her mobility has improved if I can believe this is inferred by her "forgetting" to always carry her CB radio where ever she goes. She has been sleeping much better as well, except that over the last week she has experienced tingling, circulation problems in her arms, especially the right, while she is in bed asleep. This often happens to me as well yet in her case the effect results in burning pain from shoulder to fingers and usually takes some time to dispel, usually by getting up. She has an specific sore point on her right shoulder blade that can be relieved by use of a vibrator. I suspect some of this problem may be a mild form of RSI due to playing a couple of games of Wii Bowling each evening. After not Bowling for an evening or two she thinks the pain has eased. So last evening I suggested she attempt to bowl with her left hand. Doubtful about her ability to use her left hand this way, she then went on to beat me in two games! I think I was having a bad night :-( as I am hanging onto Pro status by the skin of my teeth while she wobbles between an average about 800 (I have no idea how this score is calculated). She even had strikes and picked up spares. What I find most interesting is that when using her right hand she leads with her left leg (strange) and when she bowls with her left she still leads with her right leg (which I assume is "normal"). When we first began Wii bowling possibly half her attempts resulted in her dropping the ball and being presented with an error message that she had released the B button while not swinging her arm (a message to that effect anyway). That message is very rare now and her arm is straight as she really swings.

She became a manufactory for some two weeks embroidering & stitching things called "towel-toppers". Guess what some of you will receive as presents in the near future?

And she tells everyone how good it is that we are "doing things together" again with the Wii, instead of sitting in our respective rooms with computers & sewing/embroidery machines. It seems there are many benefits from playing these childish games than the obvious. And I am feeling better for the exercise.