Chapter 29 - Good with the Not So

Last Wednesday our friends from the hot air town called in for lunch on their way home from up north. She quite enjoyed the visit; sometime since the girls had been face-face. We had a BBQ for lunch. Then in the evening the quilt group in our village. By 10pm her evening meds had not kicked in so we watched more than a couple of episodes of "Some Mothers do 'av 'em", that old Pommy series, (our DVD order for the two series arrived today) until 12:30am and I'm not sure that did either of us much good for inducing sleep.

Then another social whirlwind day on Thursday when we visited the home of two new friends we recently made (wrong word, friends happen spontaneously) living on some bush acres not far from here. She surprised me - she strolled unaided with her friend around bush path around the dam while we blokes trailed some distance behind. Uneven surface, sticks, leaf litter. That night was another bad one when she was unable to sleep until 3am.

Next morning I was in my dungeon when she surprised me, showered, dressed and her hair in her towelling turban (dries her hair without muscular effort on her part) at 10am. She then ruined a good start to the day by causing herself some hip pain and back ache by stooping to pick up clothes to place in the washing machine. In the afternoon she completed the sitting-on-chair portion of the PD exercises. Although only lasting for no more than half an hour, she was very tired, hot and sweating at the end, so to bed for an hour. Later we walked the village for fresh air. She was able to sleep from about 1:30am.

On Saturday she again appeared at 10am showered and dressed. Today she went through the exercises at 11am with much the same result. She became hot then cold. Rather than bed, she attempted the relaxation procedures at the end of the recording. She then complained of a headache caused by the effort needed to follow the instructions spoken softly over sleep-inducing music while watching (should one's eyes be open) beautiful waterfall scenes on the TV. I find this intriguing - this is opposite to the desired effect! I can remember many years ago her saying that she could not visualise her bodily extremities becoming "heavy, soft, floating etc" at some relaxation classes she attended, no matter how "hard" she concentrated. I am unable to explain it to her. She also had balance and relaxation problems on the several occasions she attempted Tai-chi. Some short periods of machine embroidery, but not for long because of back aches and finger tremors when threading the needle. Automatic needle threaders are like food-stuffs, only 97% fat free.

I awoke at 2:30am this morning to her telling me she was taking a Kalma. In tears, she has been restless, uncomfortable, unable to sleep. These last few nights have possibly been a problem due to the exercise; I think she needs to continue. I see her lessening need for help to position herself in bed and her showering dressing abilities as positive signs. I woke at 7am this morning, tip-toed out for breakfast. I had started this blog chapter when she called me on the CB at 8am. She had not taken her 6:30am meds! Did we both sleep through the alarm? After helping her to the toilet I checked that the alarm was still primed for 6:30am; it was. Maybe she woke and automatically reached out and stopped it. Back into bed; I doubt we will make church today.

Chapter 28 - Tai-chi on a chair

Yesterday, Tuesday, she felt "stiff" all morning. She sat in her chair watching the Anzac marches on TV. She asked for her father's war record so she would know which unit to look out for. She saw the banner of the 4th Infantry battalion. "Mum always looked out for it."

Her right arm is becoming sore now. Her left elbow hurts. She wonders when the next appointment is to see her friendly specialist physician, also Margaret the Bowen lady as her lower back feels stiff, although she complains of no pain there.

A friend with new consumer technology is able to copy video tapes to DVD using his entertainment system. He made a copy of a tape of exercises specially designed for PD patients, mostly performed while seated on a chair, hence the title of this chapter. The most vigorous routine has the patient rotating each arm in slow cartwheels. Hardly aerobic, not stressful I would have thought. She has had the tape for years although there was usually some imagined hindrance to regularly performing to the slow rhythmical music. Now she is able to sit in the back room, close to the large TV and use the DVD. On Monday she tried to follow along with the people on the screen (all seated on chairs) but said "I have to be good to do this" and that is bitter since when she is "good" she has more interesting activities than exercising. But if exercise can help her then it is effort & time well invested. So yesterday about 3pm when she was truly "on" she began the exercise routine, even the one where she parades around a broom stick (bought recently for the purpose) held in one hand, then the other. She balked at doing some of the movements required while laying on the floor. She would have had difficulty rising, even with help. She was so pleased with her performance that she played the CD again after skipping the meditation section at the end. She has never been able to contemplate parts of her body relaxing, becoming heavy, becoming soft. Strange.

About 4:15pm she called me to say she felt light headed, balance was poor and felt cold. "I need to lay down." We agreed I was to wake her at 5:30pm as I tucked her beneath the bed clothes. At that time I returned; she was awake, thought she had dozed fitfully. She rose, feeling weak. She described the tremors after the exercise as "different, all through my body, tight in my chest. I'm on the verge of needing a Kalma. But there are still no tremors in my left arm." I assisted her at the toilet then to her chair, as she felt unstable, felt hot although there was no heating on in the house - I thought it cool. At 6pm she had her usual Sinemet CR & Inderal and was feeling awful. By 7pm she was feeling calmer inside so at 7:30 we ate curry and rice left over from last night. She cannot tolerate very hot curry, so this was so mild to be a poor excuse for one. Could spices effect her? Just as likely if gentle exercising can. She was alright then until 10pm when she began to feel "off" and took her evening happy pill (I doubt this has much impact on her ability to sleep) and we were both in bed at midnight (after watching most of a horrific documentary of interviews of villagers living in Ponar, Lithuania at the time of Jewish massacres between 1941 & 1944) when she took her last Sinemet CR for the day. I read for a few minutes then fell asleep. She said this morning that she was awake until 2am. She did not rise until the alarm sounded at 6:30 for her first meds. Another day begins. She sleeps.

Chapter 27 - A Bad Hair Day

After washing hair in the shower on Saturday morning she needed help drying herself and dressing. She says the physical task of hair washing hair exhausts her. Her midday meds were taken at 1pm although she did not feel she needed them. She was distressed while dressing for the evening. We were celebrating a friend's birthday; he had entered his 80th year. So out into the sticks to that little place with one pub, several closed churches, a school and an old mill converted into a restaurant. (And a distant cousin of mine - she moved there recently for the quiet.) Roaring open fire, rustic setting, uneven floor, convivial con-man host, excessive quantities of cheese, red wine, rare-cooked beef, soup, figs in syrup & tart, and a few other items forgotten not sampled no digestive spaces remaining. Outside crisp black sky. We sat in a corner where she felt safe. We dined well and later suffered, three of us with digestive shock. She ate less although too much protein for her meds. Her midnight Sinemet CR failed to work at all. She rose several times during the night, very stiff, toes curling. She walked the house for about an hour until 7am then rose at 8:30 am to dress for church, followed by shopping. We visited friends in the afternoon. Her day was good.

Have I mentioned her need for shoes? Whenever she rises in the middle of the night she needs to wear her soft brown slip-on shoes to help maintain her balance and help keep her toes straight. Just another barrier in the way of urgency.

Chapter 26 - A Matter of Balance

For the last week, maybe longer, she has commented that she feels as if she is falling backwards. Perhaps in compensation, she leans forwards, assuming the posture of an Asian lady who has planted rice seedlings most of her life. She puts her bum against the kitchen benchtop to force herself upright. We discussed this going to bed last night. I queried whether she still has problems with the bathroom floor; no, she no longer senses that the floor slopes. A month or so ago she was afraid of the bathroom and several weeks have gone by without her need for assistance to dry her after showering or for dressing.

I was awake when the alarm sounded for her 6:30 meds. Back in bed she lay on her back; "Can you turn me? My bottom is stuck in a hole." I rolled her to face toward the window on her left side. I showered, a short walk and breakfast and she sleeps soundly in the position in which I left her.

A few days ago she surprised me by stitching some rose designs; she dreams of making a quilt using some rose designs she downloaded. Surprised me because for months now she reads group postings, emails, downloads designs either "freebies" or paid for, yet never gets around to stitching any. Weeks ago I repositioned everything in her sewing room to minimise claustrophobic, boxed in areas. Last night I removed her normal sewing machine from its position on her sewing table return, which was then pushed back into the cabinet. She said I was "forcing her". Hopefully not, just providing opportunities.

Earlier in the week she called me on the CB radio. She wanted me to see a medical programme on one of the commercial channels. How do you people watch those channels to be bombarded by poorly made, brash advertisements? An example - at the point when surgeons had lifted a flap of skin on a skull into which they began to drill with their Black & Decker the station went to a commercial break (at least I was saved from having to avert my gaze). Sorry about the soap box. The programme detailed in living discomfort the writhings and posturings of dystonia sufferers in the UK. Coming from the UK rather than the other place there was no extra emotionalism thrown in, not that there was any need to do so. We had considered dystonia to be a type of muscle contraction experienced by PD sufferers and others, rather than a disability in its own right. I spent some time yesterday researching dystonia in the "big library in the sky". Are there implications here for us? After all, the friendly specialist physician (not a neurologist) who discovered her in hospital said her movements at that time were dystonia due to over-medication. He always notes her facial responsiveness, her ability to express herself with facial expressions as atypical of a long term PD patient. Perhaps all the neurological disabilities, PD, MS & the others, are part of a long tapestry. She has a small piece of the pattern. She does not respond very well to PD meds; there are really no medications for dystonia.

Chapter 25 - An Uncomfortable Night

Both feeling tired around 10pm last night we went to bed early for a change, she to sleep noisily, me to read for awhile. Her alarm was set for midnight meds. Help was needed for her to get up then and also around 2am. She called to me at 4am that she could no longer stay in bed; restless, uncomfortable and sharp shooting pains in her legs. So she walked about the house & sat in a chair until her 6:30am meds when she returned to bed. She sleeps now.

Chapter 24 - Gradual Changes

Her alarm sounded at 6:30am. I rolled over to peer through the gloom to see her partially raised in her bed taking her meds. I wasn't awake when she came to bed last night. As I dozed off again she called; she needed her legs pulled over the side of the bed; I helped her stand; she went to the loo unaided. For some time now, weeks at least, this has become our routine. I may get up in the middle of the night but I usually don't recall her doing so. As I snuggled back into bed, thinking I should go for a walk, as I exercise so little, the thought dawned on me that she has not asked to go for a walk lately. Perhaps we just lost the habit while I had two weeks of 'flu. Thinking along these lines I asked as she came back to bed "You haven't needed to go for a walk lately?" "No," she replied "I don't seem to get that tension feeling when I have to move." Interesting I thought to myself. She awkwardly kneeled her way into bed. I watched. "This knee still hurts. It's as slow to get better as the ankle was." As she settled back into bed, needing no help, she said "The tremors seem to be less. Although they still happen an hour after meds and then 3 or 4 hours later. But not as much. And between 4pm & 6pm remains my worst time of the day." Are we seeing a trend here?

Easter is gone. We didn't attend Good Friday services because a disturbed night kept her in bed till 11am. On Saturday we had planned to visit her sisters who, with other couples, pilgrimage each Easter to a small town an hour up the highway from here. We usually make a day visit since we moved to this part of the country. Our Saturday visit was cancelled because the cold wet weather would have meant her sitting inside caravans most of the day. She finds enclosed spaces uncomfortable, even our own caravan. Sunday, a fresh & bright day, we drove to be with the others. A pleasant day sitting in the sun. Although we had her raised toilet seat with us, she did not bother to use it at the park toilet. Fortunately her sister went with her. She was unable to rise sufficiently to reach the latch of the door behind which she had locked herself in. The sister handed a wet mop over the top of the cubicle and the mop handle was used to unlatch the door. It's the simple things in life that trip you.

We thought of joining the others for an evening meal at the local club. But her uncomfortable meds time was upon her so we left for home a little after 4pm. As we came into the north end of town we stopped at McDonald's, no crowd, a quiet corner for 10 minutes of wholesome junk food.

Chapter 23 - Quiet Times

For a couple of days now she has been reasonably well. Needing only occasional help rising from a chair. None in the toilet or after showering. Her sticky paper patchwork has been keeping her occupied. That is my term for it. A 2 inch grid on paper covered in a layer of heat activated glue. Small squares of material are positioned on the paper about 100mm square then ironed into position with a small soldering-iron device. Later, the paper is folded along the lines and stitched, producing a 1/4 inch hem joining the squares of material. By this means PD tremors do not disturb the placement of squares. She performs the task seated in the back room with the old ironing board in front of her as a workbench. I think she did the task for too long and too late last night since, although comfortable in bed, she slept poorly because the tendons in her neck were very tight. On Thursday night she had taken a tranquiliser (I was told of that this morning when she said she didn't wish to take such things regularly) for the same problem. After meds at 6:30am she has returned to sleep.

Chapter 22 - Some Normality

Almost a week since I posted anything, partly because she had a touch of 'flu after having her injection. Then I caught it. This is either the 4th or 5th year in a row that we have come down with 'flu after injections, the GP says that's coincidence. Maybe, perhaps hanging around doctor's surgeries for extended periods because they run behind schedule is also a health hazard. A cousin who was to call today changed her mind after hearing me snuffle over the phone.

Fortunately, she has been sleeping comfortably, maybe up once during the night, does not need assistance from me, is usually able to get in & out of bed. She has not required help to dry after a shower or with dressing. Quite a difference from preceding weeks. Last Friday evening she was able to sit through an embroidery "roadshow" at our local friendly sewing centre. We spent outlandish amounts of money.

On Sunday I was too dead for us to attend church. Today she did not go to KYB. In expectation of the cousin's visit today she made a chocolate cake; at the kitchen bench she quickly bent into a position where her body was almost horizontal, as if she has been planting rice seedlings in S.E. Asian paddy field for most of her life. I had to place one hand on her bum, the other on her chest and push until her body was vertical. Needed to do this several times. "That's better" she said each time. "Does it hurt?" I asked. "Not really". I imagine it would hurt should she stay like that for too long. Since the cousin had no need of it, we each had a large slice of chocolate cake for afternoon tea. It is 98% fat free she said.