Progression Two

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

Monday, October 22, 2012

Chapter 268 - Some Changes Uncontrolled

Yesterday, Sunday, while I wrote the previous post, she rose, showered, dressed all by herself. Neither of us can remember what time in the morning this activity occurred  She thinks maybe 0830 or so. Some days earlier I discontinued writing notes in the diary.

So what's different about today?

To begin with, yesterday I swapped the mattresses between our two beds; hers had the special one that molds to the shape of the body, bought maybe 3 years ago (somewhere in this blog there will be comments about the purchase) whereas as mine is a firm one possibly bought before we moved to this town (her matching mattress is stored up in the roof). The second hand car sales persons that work in bedding shops would have one change mattresses every few years, but then I suppose they have a need to feed their kids.

Recently she has been complaining that she sinks into a "hole" in the "special" mattress, that such prevents her turning. So rather than bring her other one out of the ceiling I just swapped mattresses yesterday morning. I slept OK on the "special" one; yes, it does have a "hole" but that is simply the manner it which it folds around the body at hips & shoulder.

About 1930 last night she wished to post a birthday card to our favourite daughter-in-law and volunteered to walk up to the post box in our village hall. She walked there & back, I suppose 1/2km without difficulty.

We were in bed about 11pm last night, I think she went to the loo once before midnight. I had positioned the commode at her bedside as usual these last weeks. Sometime around 0230 she woke me to help her out of bed; she went to the loo rather than the commode I discovered this morning when I rose, earlier I was in a fuzz, not having a clear memory of the event. She assures me that was the only time she went.

About 0800 she came out pushing her trolley while I was beginning my Wii hula hoop exercise. After finishing I invited her to do some stepping, she was only capable of about 200 steps, needing to sit down. I made her some toast then she became lost in concentration with an amusing felted hat she is making for Melbourne Cup celebrations at her sheltered workshop. Forgot the time, time for a shower, now 0930, needed the chair in the shower, after some short time on the loo where her bowels are working better (a large teaspoon of Metamucil in her evening fruit juice I suppose after the pain killers have clogged her), after the shower she called on the CB needing help to stand & complete drying, trolley into the bedroom, sitting on the side of the bed dressing but unable to stand again to pull up her incontinence pants, which I stressed too much and ripped. She will change them before going up to another Bowen appointment. Those damn pants are expensive; fortunately she is subsidised for purchasing them & I bought a large number at a discount a week ago on line.

She is now dressed, back to working on the hat, No pain while seated, left leg has pain when she stands but goes after a few steps. Another day, another week.

Sunday, October 21, 2012

Chapter 267 - A Bad Patch

My head is thick this morning, jet lagged by helping her out of bed 3 or 4 or I don't know how many times last night for her to sit on the commode beside her bed. She says she has no pain yet her left leg throbs in several places. But I am way, way ahead of myself.

After writing my last post on Thursday 11th the GP called (or the receptionist) for her to see him that afternoon. He proposed she has cortisone injections and in the meantime prescribed Durotram since the Panodol Forte gave her little relief. The CT scan of a few days ago showed two disks, at L4 & L5 I think, showed thinning, more so on the left side than the right.

So that night she took a Durotram at 2200 before going to bed; well not actually bed, since she sat in the wheelchair all night. I talked her into taking another Durotram at 0230 Friday morning to speed up the pain relief, and that was wrong because the fine print says one a day, although I am sure the GP said she could take two.

At 0700 Friday she attached the TENS machine to her leg as well as her pillow which vibrates (battery powered). She then got into bed, sleeping until 1000 when I found her sitting on the side of her bed, head drooping, feeling whoozy. Commode then back to bed asleep.  At 1430 she rose, made herself a chai latte, had a piece of cake and then fell in the kitchen without hurting herself; she she hadn't felt dizzy, just fell reaching for a biscuit container. By 1545 she returned to bed, unable to stay awake. At 1540 I woke to to ask whether she had made an appointment for the cortisone injections; she hadn't so I rang, to be given an appointment for the 29th October, since the injections had to be given by a special doctor using a CT scanner. Between 1900 & 2000 she had pasta & ice cream with cake before nodding off. So at 2045 she returned to bed. In pain all day. At 2145 another Duotram because the fine print says to take a tablet at the same time each day. At midnight she woke, problems removing her incontinence pants to get on the commode, needed help to return to bed, and I made a note in the diary that the whole procedure took an hour. Because we were both loosing track of what was happening, the sequence of events, that I from this day I began making notes in the diary, although rather disjointed & failed to include some things I'm sure. Now that matters a somewhat resolved I have discontinued this, it becomes too irritating to both of us, even though being able to review the sequence of events can almost be comforting.

Saturday 13th October (my scribbled diary entries)
0100 Into bed
0545 got herself up but needed help onto the commode (near foot of bed)
0610 PD meds
0620 Two Panamax for leg pain. Leg out of bed resting on commode lid.
0645 Sitting on side of bed
0800 Showered herself sitting on shower chair, dried most of herself
0815 Dressed herself
0835 Tried doing stepping on Wii, only 220 steps managed
h several pauses, leg too painful
1030 Late with PD meds
1100 Two Panamax
1215 Soup for lunch
1230 200 steps on Wii with one pause
1320 Falling asleep, says top of head tingles (now says this has been so all morning), mouth now tingles. Unable to complete knitted "butterflies" without making errors, usually takes an hour, now longer
1330 BP laying on bed 147/88/70. Seems dreamy, not quite with it
1400 Awake, loo for both, completed by 1410 but waiting seated for awhile.
1425 In wheelchair in lounge room BP 112/77/50
1430 Rocker under left foot became uncomfortable, asked for pillow
1435 PD meds late
1450 Wheelchaired her to loo
1545 Feels a lot better, still in lounge room in wheelchair. Rang Bowen practitioner in town to the north, appointment for 2PM on Monday
1645 Still seated in wheelchair  in lounge 145/95/67, then wheelchaired her to loo. Attempted to walk but unable
1800 Heated a frozen dinner for her
1830 PD meds
1945 Walked in pain with walker to loo. One Durotram
2215 loo then bed
2245 Heat bags on legs
2345 Three loo visits in last hour
2400 PD meds, commode. Left leg pain all day

Sunday 14th October
0020 Commode
0335 She says 8th use of commode, I was asleep, pain not too bad
0500 Asleep, she kicked the commode at the side of the bed, contents spilled, I cleaned the carpet. She was unaware.
0600 PD meds
0850 Rose, loo, sgowered using chair. Pushed trolley to loo
0930 Breakfast seated in chair at TV
1000 PD meds
1130 -1230 She supervised some washing, I hung it on line
1245 Lunch
1420 After talking to friend on phone she feels sweaty. BP 138/88/71
1515 Feels OK not sweaty or cold
1610 Called from loo, needed help pulling up pants, sat in lounge room, needed a biscuit
1830 Meal, then dozed in chair
1915 Fell while reaching for the trolley. I lifted her with the wide blue belt, she says there are no pains
2215 One Durotram
2225 To loo
2230 Into bed. There has been no head tingling tonight. Left leg pain all day

Monday 15th October
0120 Woke me for help to get onto commode. She has been cutting the incontinence pans so that she is able to remove them easily. Yesterday I ordered a new supply plus winged pads to be used at night for ease of removal
0530 Woke me "yelping" loudly, said a large cat fell out of a tree. Needed the commode. first time since 0120
0800 Rose, walked to bathroom, emptied the commode, loo, at laptop first time in days
0830 Still at laptop, jam on toast for breakfast
0910 showered seated on chair
1230 Left for Bowen appointment
1330 Arrived in town early, waited in vehicle
1350 Wheeled her in walker to steps at house, she had difficulty stepping to verandah, into therapy room
1440 Walked from therapy room to vehicle, although she stumbled & almost fell  at verandah steps (I caught her)
1515 Back in our town she remained in vehicle while I shopped
1600 At home she has walked around stiffly, much less pain
2130 To bed
2230 rose for loo, called me help, shuffles along, some pain
2355 Needed to go again, so used commode. Some time last night the stitching on her satin sheet caused her discomfort so she removed it. Tonight she needs another one on the bed.

Tuesday 16th October
0010 Commode
0410 Commode, woke me by pulling it along the floor
0510 Yelling out, talking in sleep, woke me
0700 Coomode
0900 Woke
0910 Found her on commode, unable to rise, helped her walk to the loo, no pain initially then some in hip, remained on loo 10 minutes
0925 Shower on chair
0950 dressed, minimal pain but legs won't function, fears falling, pushed walker around table 3 times then brakfast of bread & jam
0955 A little peddling while seated
1005 Walking around table with walker, then out on patio  but had to sit down , pain in left hip & calf, drinking a lot of water
1025 Needed a bowl of water in which to clean her teeth, unable to do that in bathroom. Rang Day Respite to say she was late
1030 Wheelchaired her to the garage. Sat in vehicle while I bought Panadol Osteo at chemist (friends recommended these lower strength pain killers rather than the stupifying Durotram)
1100 Took 2 Panadol Osteo
1130 Wheeled her into Day Respite
1630 Wheeled her from Day Respite
1645 At home loo for both
1715 A little seated peddling
1740 Two Panadol Osteo
1800 PD meds
1930 Attempted walking around patio but pain prevented more than a few steps
2030 To bed

Wednesday 17th October
0215 Commode, she says this is the 4th time since gong to bed
0415 Commode, needed help
0600 Commode, needed help, PD meds & two Panadol Osteo
0645 Commode
0730 shower on chair
0945 Wheeled her to the garage, we drove to the club up the 4 lane to have birthday lunch with the Ugly Sisters. Wheeled her into & out of the restaurant from the car park
1200 Two Panodol Osteo ( I didn't always record her PD meds)
1600 Home again & wheeled her into loo. NOTE: Did not need the loo between leaving and returning home!! Books I had ordered for a neighbour arrived, additional copy, "Body Reflexology" for her as well. she read parts of it, began pressing pain points
1800 Two Panodol Osteo
1840 Found her asleep on the bed
1845 She had been pressing pain points & came over very tired
2200 Tremors bad, went to bed, PD meds
2350 To loo, stepping on toes although no pain

And so it goes on. She relies on the commode but lacks confidence to get out & return to bed, although the commode is only positioned a pace away. I think she woke me at least 4 times last night, today I have the enthusiasm of cold excrement, am irritable and tired. She surprised me by showering without requiring the chair, mopped out the shower & dressed without needing assistance.

She is presently seated (mid-afternoon) in a comfortable chair in the lounge room, reading a book, her left leg crossed over her right. When I tell her she must not cross her legs because that causes back & leg problems she says doing so gives her relief in her left leg. Then we have a debate about whether dull aches are pain or not, at the moment it seems she has ache area on her lower left leg.

Against my better judgement I went to our computer club yesterday afternoon, rang to check on her, she had felt tired & was laying on the bed. I can't remember whether she was there when I returned 90 minutes later.

I prepared a FAX to be sent to the neuro requesting a referral to the PD nurse et al to undertake apomorphine tests but she decided she does not wish to proceed that way without speaking to a recipient of the treatment. I emailed the PD group in Hot Air City asking  if they know of someone willing to speak about their personal experience with apomorphine but no reply yet.

She rescheduled her PD meds in an attempt to smooth out the ON times

0600 2x Sinemet 100/25, 1x Sinemet CR, 1x Deralin
0900 2x Sinemet 100/25
1000 1x Sinemet CR, 1x Deralin, 1x Sifrol
1200 2x Sinemet 100/25
1400 1x Sinemet CR, 1x Deralin, 1x Sifrol
1500 2x Sinemet 100/25
1800 2x Sinemet 100/25, 1x Sinemet CR, 1x Deralin, 1x Sifrol
2100 2x Sinemet 100/25
2200 1x Sinemet CR, 1x Deralin, 1x Sifrol

Thursday, October 11, 2012

Chapter 266 - Another Signpost

Her birthday yesterday. I took her to the club for lunch. I wheeled her in her fold-up walker which doubles as a wheel chair. She is terrified when being wheeled in the wheel chair or the walker. I rouse on her not to grab at doorways, railings and the like as we go by, she grabs at things to prevent me tipping her out, even though I tell her that doing so is more likely to cause her harm. I ordered her potato & bacon soup and chili king prawns with noodles. The bowl of soup was large enough for a main course, the prawns arrived as some sort of pork & noodle dish, I complained, someone blamed a new waitress (why can't people accept the consequences of a mistake without blaming subordinates?) and in due time prawns were served, meanwhile I had to commence my steak. After the soup she was unable to eat all the noodles with the prawns, none of the latter were left though. I delayed ordering coffee & cake by walking up to the chemist for some meds for me & while there bought her weekly puzzle magazines plus a lottery ticket as another present for her. When I returned to the club she had decided she wished to go home rather than eat anything else. I had parked across the street from the club's car park (which was full at the time) so on leaving she refused to be wheeled across the road again (too dangerous she says) so I had to bring the vehicle into the car park for her. We were at the club for about 3 hours.

Three neighbour friends visited separately late in the afternoon to wish her happy birthday. Although we were in bed about 10pm, she was frequently out of bed to use the commode until past midnight. Somewhere one of us read that cold packs ease the central pain we think she has. The night before I gave her a packet of frozen beans to apply to her left leg; Last night she suggested the cold packs we used to keep in the freezer for when we went on picnics and road side stops, so I placed those into the kitchen freezer. A frozen pack may have helped yet she prefers "Ice Gel", the blue gunk in a tube that leaves a menthol smell. During the night I hazily woke as she was getting in or out of bed, sometimes I rose to help her. Earlier she had requested the firm square chair to sit in, at 4:30am (or was it 5:30?) she needed the more comfortable chair so I brought that into the bedroom. She went to sleep in that. I'm unsure where she was when taking her 6am meds. I went back to sleep without my CPAP, waking several times. About 7am she returned to her bed, I emptied the commode because she thought it full enough to splash whenever I moved it. I emptied it, than she needed to use it again. With my CPAP on I slept until a little after 9. She was awake. I rank the GP's surgery, who was not in yet and fully booked up for the day anyway and after explaining my wife had a CT scan on Tuesday & was in agony, I was told a note would be left for the GP to contact us. Now after lunch and no phone call. About 9:30am I rang the neuro's room in Hot Air City to ask for a referral to initiate the apomorphine tests as suggested by the PD nurse we saw a few weeks ago. She is quite negative about an apomorphine trial but I believe she needs to at least see whether she is able to tolerate it before deciding she is unable to cope with injections. Unfortunately, the neuro is not in this week so I need to ring back next Tuesday. The PD nurse seemed to think her quality of life may be much improved.

She is scared. And in pain, it never leaves her left leg. She is unable to walk, her feet don't leave the floor. Our reading indicates Vitamin B6 is beneficial for central pain; yesterday I had her take 100mg of B6 (some time ago it was one of the anti-oxidants she regularly took) plus the magnesium compound that also includes 60mg of B6 but this morning I told her not to take anymore, since the GP contra-indicated B6.

I want to take her up to the little town north of here to have a Bowen treatment. She refuses to go, scared of travelling along the winding country road.

She has caught up with her puzzle magazine entries so I posted them for her in our village mail box. There has been no embroidery or patch work activity in the last week. Some days ago I encouraged her to do some Wii stepping for a little exercise but she was unable to do more than about 200 steps so that is not being pursued further.

Sunday, October 07, 2012

Chapter 265 - A Small Change Perhaps

She was fortunate to make an appointment to see our usual GP last Thursday, usually he is away during school holidays and when he is there one often needs to wait a week for a vacancy. Her need to see him was simply to renew some of her scripts, not to speak about her crippling pain, although that was discussed. He did not think her leg pains were due to thrombosis since there was no swelling, wondered about her lower back area & suggested a scan. I mentioned that the neuro wanted that done but he, the GP, had thought to do so at the time was too close to another scan she had done. Anyway, he referred her for a scan, wondering whether she will be able to remain still long enough. I wondered whether she will even be able to get on & off the trolley! Some time ago I decided that we will always be prepared with a typed list of her meds whenever she sees a doctor; the confusion that results when she attempts to detail her meds while the doctor attempts to take notes provides ample opportunity for errors in prescribing & understanding. So I irritated her that morning by pedantically recording her meds; she had returned to a 4-hourly regime, was taking Deralin in 40mg doses again about which I reminded her that at the neuro's suggestion she had reduced that and in consequence had neither falls or "mini" blackouts so why the hell return to 40mg? Due to the "shakes" of course; anyway, she has now returned to 20mg of Deralin. The GP, in typing his notes, queried the Cenovis, bought over-the-counter after magnesium was recommended some months ago by another doctor when she was unable to see him, the usual one. Magnesium had been prescribed because at the time she had been describing her leg pains as "cramps" and magnesium (in the form of Cenovis) may alleviate the pain. The GP said that the Vitamin B6 component of Cenovis may diminish the effectiveness of her PD meds. However, for some years she has taken Vitamin B6 on the published advice in the  book "Stop Parkin' and Start Livin'" by Coleman (page 133), although she stopped taking individual B6 tablets when she began taking Cenovis about a year ago.

A quote from   http://www.mayoclinic.com/health/vitamin-b6/NS_patient-b6/DSECTION=safety says, in reference to Vitamin B6

Use cautiously in patients taking agents for Parkinson's disease, as pyridoxine enhances the metabolism of levodopa, reducing its antiparkinsonism effects. However, the use of carbidopa and levodopa (Sinemet®) may avoid this interaction, as carbidopa can reduce pyridoxine levels.

 I will discourage her from taking either Cenovis or B6. Perhaps there is another form of magnesium available, although the pain she has been experiencing recently surely could not be worse with or without magnesium. The following image shows her meds, with the Cenovis scribbled out by the GP.



In the middle of the above verbiage she called for urgent help, the Metamucil I add every few days to her evening glass of fruit juice was having an impact on her; fortunately I found her in her sewing room in her wheel chair so it was only a matter of pushing her to the bathroom without pain when walking behind her trolley. Earlier the library book in her 7" tablet had timed out when she needed to sit for awhile until she was ON, then later she cornered herself in the sewing room.

On Friday the kids wished to meet with us for her birthday, but they wanted to meet somewhere else than the usual convenient places, such as our town or one half way between. So we met in another little town, with a handful of tourist traps & restaurants. Not a good choice for someone with painful walking problems made worse by uneven terrain, so I had to push her in her collapsible walker, which doubles as a wheel chair, over bumps, over gutters, steps and most shops we did not enter because of the confined cluttered spaces. Where we had lunch provided easy access if the 45 degree slope down to an access ramp was ignored. Fortunately, a quilting shop was open so she stocked up on a large number of "fat quarters" at my insistence, as a birthday present.

The painful areas in her left leg cause her to walk on her toes, almost hopping, to limit the weight on the left leg. Her steps tend no longer to be a shuffle but very small stuttering steps. She accepts the commode in the bedroom now, although at first she tolerated the painful trip to the bathroom. She continues to go at least 3 or 4 times before settling down for the night. Several mornings in this last week she has asked for the shower chair while having a shower, although she prefers not to because it restricts her ability to wash her lower regions.

Wednesday, October 03, 2012

Chapter 264 - Hell for a Fortnight

I don't quite know where we are. her pains persist. The thigh & calf of her left leg. The leg throbs when she goes to bed. She hardly sleeps, although this morning she returned to bed at 7:15 very tired. As for most nights she spends a lot of time sitting on the side of her bed. While lying in bed  she often has her left leg out from under the bed clothes to rest it on the lid of the commode. After resisting strongly, she now accepts having the commode at the side of her bed, next to her trolley which carries all her odds & ends, meds, water and whatever. Sometimes in the night she is able to get onto the commode without waking me. Sometimes she is simply unable to stand & rotate onto the commode without my help, although she may sit there trying to stand without my help. Yesterday morning early she waited so long an accident was imminent so I cut off her incontinence pants with small embroidery scissors she keeps on her trolley; she had done this herself some nights earlier. I have to use the wide blue sling with handles around her body in order to lift, swing her into position; similarly to return her to bed. I had to insist the commode be at her bedside because the shuffling effort, her hanging onto her trolley, me assisting wherever possible (if I was awake) was just too cruel for her. And then her hanging onto the fireman's pole while trying to pull her pants up was all just too painful & stressful for her.

She regularly tells me that between , say 11pm and 2am she may have to urinate 5 or 6 times. I usually lose track as I doze off. One night I was awake almost as much as she was so that next day I felt as if I had jet lag, quite light in the head, unstable on my feet, was glad I had no need to drive anywhere. I did not let on to her that I felt that way, otherwise she resists waking me when she really needs the help.

Last night she told me while in bed that there were pains in her chest, the back of her head, her shoulders. She occasionally checks her blood pressure. I suspect she feared she was having heart problems. I think she has been near a panic attack quite frequently.

Last week I spoke to Jane the PD nurse in Hot Air City about finding someone using an apomorphine diffusion pump to speak to her about the pros & cons, she has not got back to me yet, there was someone that had been using normal injections about to go on a pump. Unexpectedly, during the conversation, Jane mentioned twice that apomorhine was not a cure, as if we were unaware that none of these procedures cured PD, after 21 sodding years, the last few months of which her quality of life has deteriorated at a rapid rate. We already know there is no way out; we just need some relief. Doctors & nurses may pass off using injections as a simple procedure but I doubt they appreciate how abhorrent doing so may be to a patient & carer.

Each morning I am using the Wii for hula hoop exercise so that I avoid lower back/hip problems from lifting her to her feet (a few "twinges" in my lower back scared me, if we both have standing/walking problems then we will really be in the poop) and usually I encourage her to do the stepping exercise on the raised board although sometimes, as this morning, she does not complete the 800 steps. Although her problem is with pain in her left leg, I have noticed that when she is Wii stepping her stands on her toes of her right foot and may use her full foot when I mention it.

In the last week or so she has made two cakes in the oven , one to be iced for her birthday, the other she has cut for me to eat, as well as two plum puddings (for Xmas?) in the microwave one of which she miscalculated the timing so we are eating that as sweets & I find the chewy pieces are to my liking with a cup of tea. And she has made an embroidered wall hanging calendar for her sister.

Yesterday she spent a reasonable day at Respite. On Monday last week the person in charge of the respite facility came to interview us, seemingly a requirement for customer satisfaction and reporting for government support I suppose.

Apart from Respite on Tuesdays and perhaps once or twice walking around the corner to her friend's place she has not been out. Last Saturday I went shopping on my own, she was not up to venturing out. One afternoon I suggested we walk around the village, but once out the front door she was unable to go further.

Yesterday she increased her meds to reduce the time between doses from 4 to 3 hours hoping to decrease her OFF times. I intended to record her ON/OFF times today but forgot; there will always be tomorrow.

I subscribed to some Soul Seeds for her a week or so ago; unsure whether the daily message helps her; she makes no comment about them.

She said to wake her at 9am, it's now 9:10. I found her seated in front of the TV. "How long have you been up?" "Since 8; my legs were hurting too much." So I made her two slices of toast with apricot jam and a mug of her chai latte. I suggested she use the Circulation Booster to ease the pain in her legs.

I must have a shower; she will want want soon, although hardly ever needs assistance with drying these days. Problems & our reactions go in cycles.