Chapter 287 - A Most Confusing Week

This morning I found that for the past week her notes in one of the small spiral note books is incomplete, not recording her meds & events, to make them almost useless. One day she remembers missing a batch, I suspect either 6am or 10am on Wednesday but I don't understand how that caused her behaviour on Wednesday. I assumed excessive medication to cause such behaviour, rather than less.

This morning after wheeling her back from the shower, helping her to dress, we discussed the strange ugly feelings she has in her head. Last night she believes she used the commode every hour on the hour (there was sufficient in the pan  for that number of voids) and each time she closed her eyes to return to sleep that feeling went through her head. She becomes stressed attempting to describe the feeling; the closest we came was the feeling sometimes experienced when on a graveyard shift (at times we have both worked through the night on shift work) when the body feels cold, shivers go up the back and the mind experiences grey. She was thankful the experience was brief each time she closed her eyes last night.

We continue to debate the benefit of the bed poles. I removed them some weeks ago when she insisted they gave her back aches, she says the back aches have "gone" (I doubt) yet she misses the poles because she needs them to pull herself around the bed. The OT from the hospital (the kind person her organised the loan shower/commode chair) believed that her back pain was possibly due to the stress on her back muscles while pulling herself around the bed (there had been one on each side), rather than any distortion in the mattress due to the poles.

Although the weather is much cooler, she still needs a fan blowing on her as her meds wear off. I had to replace the batteries in the remote control of the fan in the bedroom yesterday. Although her body was completely covered by a sheet & quilt, the fan was blowing on her face this morning when I rose at 0830. Having the remote control on that fan allows her to switch it on and off during the night without having to get out of bed herself or disturb me.

The redness is lessening on her lower back although she remains bothered with itchiness there. Itchiness & red spots appeared on the back of her neck, just beneath the hair line and on each wrist. At first I thought these patches may also be due to the red Tiger Balm (she tends to rub remnants of Tiger Balm around her wrists and aching thumbs) but I now suspect sun exposure when she was bent over doing the "gardening" on Wednesday. Some years ago, recorded somewhere in this Blog I hope, we found that 20 minutes of sun exposure on only one arm made it very itchy compared to the other covered arm. Since then she is usually careful to keep her arms covered; I can't remember what she wore on Wednesday, probably a short sleeved blouse. Her legs no longer bother her with itchiness.

On Friday, Good Friday, our local village has fish & chips for lunch; I suppose it can be said that there may be religious connotations. We attended. A large meal of 5 pieces of battered fish and chips which should not have impacted her meds too much, yet it did, none of her following meds seemed to kick in. I failed to note times but the meal finished by about 1330. We made a quick exit about 1350 because she thought she need the loo badly, probably because her meds were due at 1400.

During past Easters we have visited the Uglies staying at the caravan park in the Highland Town, a sort of religious pilgrimage each year. When I asked about driving up there she was dismissive, saying she did not feel like mixing, but then said that a quilt was mentioned for the birth of a daughter to her niece in April, although she had thought the event was in July. This explains why she became concerned about trying to locate butterfly designs a few days ago. The designs have now been collected, some resized, ready to be stitched. Now she thinks the over-all construction may be too large so is thinking about re-scaling it.

Her current meds regime is:

0600 Sinemet 100/25, Sinemet CR 200/50, Deralin 40, Comtan 200, Sifrol 1
1000 Sinemet 100/25, Sinemet CR 200/50, Deralin 40
1400 Sinemet 100/25, Sinemet CR 200/50, Deralin 40, Comtan 200, Sifrol 1
1800 Sinemet 100/25, Sinemet CR 200/50, Deralin 40, Comtan 200
2200 Sinemet 100/25, Sinemet CR 200/50, Deralin 40, Sifrol 1

Chapter 286 - Coping Difficulties

Things are changing; we are stressed coming to grips with our current situation. She has become more alert, dogged in her approach to matters, yet impulsive and I am puzzled for normally she is reasonably passive & co-operative. And I am grumpier than ever.

Poly the PD Nurse spoke to her on the phone a few days ago suggesting the 10am Sifrol be brought forward to 6am. She had forgotten about that and hadn't told me. The Sifrol was moved to 6am starting yesterday.

On Tuesday she was so out of whack that around 10am I rang the Sheltered Workshop to tell them she was unable to make it that day. She needed wheeling in to the shower and help drying and dressing then wasn't up and about till about 11am. I cancelled the lunch I usually have with my mate on Tuesdays while she is at Respite. He came around mid-afternoon for a coffee, perhaps wondering why she was her usual self contentedly self sitting at the table sewing, maybe that is just my self-conscious thoughts.

As in today, now 0900, she has showered herself, called me on the CB to the bathroom, where she showed me red itchy patches on each side of her lower back where she applied red Tiger Balm yesterday afternoon when she found her back sore from stooping over the raised garden bed around our back patio. A confused story. She had suddenly decided to weed & tidy the long narrow garden strips. In so doing to broke off pieces of lavender bush to plant in the bare areas of the garden strip. Also ripped up pieces of that so-called butterfly plant in the far corner and planted those as well. She was unconcerned when I said most of those pieces will die "Maybe some won't" she said. She had been discussing making a booking with the hairdresser around at Respite, because she has been having difficulties at the tiny cluttered hair dresser place down the street. Anyway she made a phone call for an appointment. She was out the back "gardening" when the door bell barked (ours doorbells don't ring, they are set to dog bark) - there was a youngish women carrying bags & stuff. "Mrs ######?" she asked. "No, I'm Mr" I replied but as the woman turned to leave she mentioned a hair dressing appointment, so I realised what this must be about so invited her in. In the middle of the haircut I queried whether she had money to pay for the service. She said there was loose change in her purse; I hate counting out a bucketful of silver, so checked the old pill container the absorbs all my loose $2 coins, finding 10 of them. After the haircut she returned to gardening. When I next looked she had "trimmed" the old leaves on the gramma plants we have been interested in encouraging to produce squash type fruit, only one so far, now the couple of immature fruit may not survive, the remaining leaves on the vines are wilted. I then needed to sweep up all the spilled soil on the pavers before she began spraying the area with water. After spending several hours out doors gardening her back ached, so that was when she applied the red Tiger Balm. So that must be avoided now for pain relief. A day or so ago she applied the clear Tiger Balm oil to her legs (I'm unsure why, the rash & itching of her legs have gone) without any re-occurrence of itchiness.

For the last two nights she says she slept soundly from 10pm at her last meds to 1am then remained awake until 6am, then slept again till almost 8am. I remained asleep so did not notice, although each morning she has been the wrong way round in bed. The shuddery weird feeling she has in the back of her head is lessened  when her head is at the foot of the bed. When in bed she says her leg pains have reduced. At times she fears going to bed.

Some days ago she was unable to find some butterfly embroidery designs our daughter had sent her; she persisted for quite some time before asking for help. Meanwhile she sent a request to our daughter to resend the files; a response asking which particular files. The application she uses for cataloguing and retrieving the designs always irritates me and she has never learned to use it well. After collating dozens of zipped email attachments into one folder she thought she found what was needed but she wouldn't tell our daughter to stop looking. Last evening she said she was unable to find the files found the evening before "They are just gone!". I went to bed.

Since she needs to make a decision in June to be assessed for DBS, apomorphine or to continue on her  never ending path of pills, I decided to clear away some of the logistic uncertainty by asking our medical fund, to which we continue to pay ever increasing subscriptions, what benefits she may expect if the DBS route was taken. We have heard it is expensive, so a ball park figure of the out-of-pocket expenses will be helpful to make the decision, since we will need to draw down on our superannuation funds and that has the potential for taxation and other governmental penalties. Below is the legalistic, very correct, response from an individual paid a healthy salary, to which we contribute. I wonder how many seconds were needed to choose the appropriate boiler plate legally approved response?

Chapter 285 - What Goes Around Comes Around

She began the Comtan. I secretly wondered to myself why she stopped taking it years ago but I was unable to remember. Anyway, rather than attempt to compose a description of the last week I will insert suitably edited versions of email reports I sent to Polly, the PD nurse.

Sent 17 March 1832

We thought it more convenient to email a report on Her reaction to Comtan.

A script was not obtained until late on Thursday 14th so She began
taking one Comtan 200mg together with her regular meds at 1400 on Friday
15th March.

Friday 15th March
.
.
.
1400    Sinemet 100/25, Sinemet CR 200/50, Deralin 40, Sifrol 1, Comtan 200
1445    ON, feeling OK
1615    Sleepy
1620    Lay on bed, thought her glasses were still on her face.
1750    Woke, legs stiff, felt groggy, needed to sit, aches down backs
of legs
1800    Shaky, no sweating, BP 145/97, 63
1815    Lips tingling, feeling queezy
1825    Sinemet 100/25, Sinemet CR 200/50, Deralin 40
.
.
.
Saturday 16th March
.
.
.
1400    Sinemet 100/25, Sinemet CR 200/50, Deralin 40, Sifrol 1, Comtan 200
1430    ON, feeling OK
1745    OFF, sweating
1800    Sinemet 100/25, Sinemet CR 200/50, Deralin 40
.
.
.
Sunday 17th March
.
.
.

1400    Sinemet 100/25, Sinemet CR 200/50, Deralin 40, Sifrol 1, Comtan 200
1445    Feeling "all liquid inside", quite shaky, needed a slice of
bread and spread to eat
1515    On 'loo, feeling funny in head, not clear headed, confused
1530    Returned to TV chair, sleepy, dopey
1540    Into bed
1645    Woke, to TV chair
1715    Feels thick in head, no tremor
1800    Still ON
1810    OFF
1815    Sinemet 100/25, Sinemet CR 200/50, Deralin 40
.
.
.


Tomorrow, Monday 18th March, she will add a Comtan 200 at 0600.

Sent 20th March 1230

17th March (cont)
.
.
1830    Tingling of lower lip, sweating, frozen in chair
1905     ON
2130    OFF, on toilet with bowel urgency but only small stool, staying
there until
2230    Return to bed, flatulence during night

Monday 18th March

0130    Used bedroom commode 4 times up till now
0300    woke with leg pains, CR 200/50 Deralin 40, some time before
sleep (Additional Comtan introduced at this time)
0630    Woke, Sinemet 100/25, Sinemet CR 200/50, Deralin 40, Comtan 200,
Sifrol 1, returned to sleep
0815    Woke, took Panadeine
0900    Unable to stand due to leg pain
0910    Wheeled on commode chair to shower then return to bedroom
0930    Walked to TV chair
0940    Breakfast
0945    Still ON, using foot pedals
1000    Continue pedalling, delaying meds to 1030 since previous were
late at 0630
1030    Sinemet 100/25, Sinemet CR 200/50, Deralin 40, still ON but
things walking inside legs, up and down"
1345    OFF suddenly, sweating, back ache, legs not painful
1400    Sinemet 100/25, Sinemet CR 200/50, Deralin 40, Sifrol 1, Comtan 200
1410    Lower outer of both legs very itchy,  placed cold packs on them
(inflamed itchy legs had been a bother prior to taking Comtan)
1445    ON, cold packs removed from both legs
1825    Sinemet 100/25, Sinemet CR 200/50, Deralin 40, Sifrol 1,  legs
itchy so applied anti-itch cream
2200    Sinemet 100/25, Sinemet CR 200/50, Deralin 40, Sifrol 1
2230    Legs itchy, no anti-itch cream left, so dabbed metho onto legs
2300    Into bed, but each time on verge of sleep feeling in head of
"someone walking over my grave", shudders, wakes. Last happened about a
week ago

Tuesday 19th March

0130    Used bedroom commode 6 times up to now, the shudder feeling
happened on returning to sleep
0330     CR 200/50 Deralin 40, found more anti-itch cream for itchy legs
0700      Sinemet 100/25, Sinemet CR 200/50, Deralin 40, Comtan 200
(omitted Sifrol 1)
0800    Wheeled to and from shower, legs painful with cramps took 2 Panamax
1000    To Day Respite
1100    Sinemet 100/25, Sinemet CR 200/50, Deralin 40, Sifrol 1
1500    Sinemet 100/25, Sinemet CR 200/50, Deralin 40, Comtan 200
1530    Legs began to itch
1600    Return home from Respite
1630    ON
1830    Sinemet 100/25, Sinemet CR 200/50, Deralin 40, Sifrol 1
2300    Sinemet 100/25, Sinemet CR 200/50, Deralin 40, Sifrol 1

Wednesday 20th March

0130     Used bedroom commode 4 times till now
0400     Used commode, unable to sleep, ache in lower back,  read a book
(note no early hour meds)
0600    Sinemet 100/25, Sinemet CR 200/50, Deralin 40, Comtan 200, Sifrol 1
0730    Walked painfully to and from shower, did not need commode/shower
chair
1000    Sinemet 100/25, Sinemet CR 200/50, Deralin 40
1230    Legs slightly itchy during the morning


She intends to begin the 3rd Comtan 200 at 1800 on Thursday 21st.

Sent 25th March 0909 (yesterday)

She missed your call to her mobile early last week because it was not
switched on until I went down the street for a short while on Friday
morning and the email you sent to Her address was not seen until the
weekend, in the last few weeks her email account has been overflowing
with new mail because she has been disinterested in using her laptop.
The most reliable way to contact us is either on our home phone
023456789 or copy both of us on emails. We each have our own computers
and accounts.

By week's end She was taking

0600 Sinemet 100/25, Sinemet CR 200/50. Deralin 40, Comtan 200
1000 Sinemet 100/25, Sinemet CR 200/50. Deralin 40, Sifrol 1
1400 Sinemet 100/25, Sinemet CR 200/50. Deralin 40, Sifrol 1, Comtan 200
1800 Sinemet 100/25, Sinemet CR 200/50. Deralin 40, Comtan 200
2200 Sinemet 100/25, Sinemet CR 200/50. Deralin 40, Sifrol 1

Yesterday, Sunday 24th March, She wrote the following note about her
previous night's experiences

"Woke at 4am with pains in legs & feet numb
Took Panadeine at 4.30
Lay down again but uncomfortable
Went to the loo at 5.30
Feet tingling
Unable to bend toes
Shoulder pain (R)
Back ache
6.00 Alarm went off, took tablets"

The number of times She has used the commode  between the time of going
to bed and, say, 0200, has decreased from 4 - 6 times to 1 or none. I
have been woken much less frequently during the night to give
assistance. During the last few nights she frequently wakes and reads
and still requires several pillows under her legs and around her for
comfort. She has not mentioned experiencing the "horror" (my word)
feelings in the back of her head for some days, although she has
mentioned tingling sensations running up & down inside her legs & feet.
After a flare up for a day of the itchy welts on the outsides of both
legs early last week, the itchiness and raised temperature of her legs
has gone, although the bumps remain.

On Friday before last we were supplied with a wheeled commode/shower
chair which she uses each night as a commode and a shower chair in each
morning since, except for 3 mornings when she was able to stand without
excessive pain in the shower.
 
Although the ambient temperature has changed little in the last week,
she seems to be bothered less by bouts heavy sweating, although she
still needs a fan blowing on her from time to time.

She said yesterday that 2 hours after medications she experiences a
burst of sudden tremors and sweating.

As has always been the case, I find it difficult to understand when She
is ON or OFF, other than when she has extreme difficulty rising from a
seated position and walking.

At the moment, 0900, She still sleeps so I will have her read this later
& she may wish to make corrections or add comments.

Not long after sending that last email yesterday Polly the PD nurse rang. I answered and thought it best for the "patient" to speak to her. Such a relief to have someone interested enough to call and discuss the situation with Her.

Yesterday she needed to locate some butterfly designs she wishes to use on a quilt; unable to find them on her machine using that troublesome Buzz Explore I was asked for help; as usual, I became quite short with her. I don't know why I become irritated when she seems obtuse, unable to see her way clear to work around problems. I collected all the stitch design email attachments our daughter had sent during the past year into one folder for her to search through. She was feeling squeamish so we ate late in the evening. I was eager to resolve a genealogy problem, she to determine appropriate butterflies for a quilt so we both enthusiastically stayed up until 0100 this morning then collapsed into bed, well I know I did. I woke at 0600 this morning to find her sitting on the side of her bed taking her meds. She was restless, slightly distressed, tingles inside her legs, I think her head to, needed to sit on the firm chair, so I moved the commode out of the way. She felt hungry, so I made her two pieces of toast. Then she needed to raise her legs up onto her bed, then needed pillows beneath them. Then, although she was not cold, she needed a quilt wrapped around her shoulders while she read a Mills & Boon. I keep wondering why she stopped taking Comtan years ago; thought the explanation may be somewhere in this blog; searched it without success; searched its brief precursor and not in there either. Saw a reference to Tasmar, a Comtan equivalent. So she must have begun and stopped Comtan before she went down to the Southern City way back in 2005. All I can remember was her original Hot Air City neurologist, the Peter Ustinov look-alike, putting her on then taking her off it when it "didn't agree" with her. I wonder what was meant by that? When I returned to the bedroom to tell that I found nothing in these blogs she had returned to bed. She is still there now at 0800, although not asleep.

Chapter 284 - Helpful People

Up till last Tuesday there had been no contact from the local hospital occupational therapists following my talk to and referral from the District Nurse I spoke to about commode/shower chairs a fortnight earlier so I called into the Physio building at the hospital last Tuesday. The same place she goes for physio most Mondays. A pleasant young OT (occupational therapist for those ignorant about such things) spoke to me, telling me the referral had been placed at "medium priority" which I didn't complain about, since there is always someone worse off and that the process involved an assessment, loan of trial equipment, quoting for new equipment and somewhere 30 days delay was built in. It was pointed out that should we be in a hurry then perhaps a private OT, several visit our town, may be speedier. She was at Respite all that day, I stayed down town and when we returned home there was a message from the OT saying our priority has been raised to the highest. Too late to ring that day, I rang next day just prior to leaving for Hot Air City for her to see the PD nurse; had to leave a message. After playing musical phones until Thursday afternoon, delivery of a trial wheeled commode/shower chair was arranged for 11am on the Friday. Then on Friday the bloke delivering the chair rang to say he was delayed until 11.30, which didn't trouble us. So at precisely 11.30 the chair arrived, was demo'd, we chatted then he left, leaving a card specifying an appointment at 2pm next Wednesday when the OT will call (we had arranged this time on the phone) and assess the situation. So she has used the trial commode each night now and as a shower chair on both mornings since. Due to the bidet on her toilet, the commode cannot be properly aligned with the toilet bowl, the commode seat lacks a cut-out in it, she tends to stick to the commode seat but as far as being able to wheel her from the bedroom into the bathroom into the shower it's brilliant. The wheel locks are effective, giving her confidence in its stability. The commode lacks a lid so at night while it is parked beside the bed, the commode seat hole is covered with the lid from our own commode, this to prevent bed clothes dangling down the hole. When the time comes for her to have a bowel motion on the commode chair, I will wheel it and her into the other bathroom where the commode fits perfectly over the conventional loo. At this time she is self conscious about using the pan for such "jobs" (urine we have come to accept) and I am uncomfortable about emptying & cleaning the bowl. Perhaps lots of paper first? Also, I am concerned that she is unable to clean herself very well on the commode or a conventional toilet. Recently I found her removing the satin draw sheet on her bed; there had been "skid" marks because she said the bidet hadn't worked; when I tested it I was squirted in the face. To test the bidet operation, I need to press down on the seat to simulate the weight of a person before the device will perform and on that occasion I was looking to closely!

A 20 minute interruption there while she needed help off the loo. I have left our "old" shower chair next to her loo so that she is able to sit on it when she is unable to shuffle away from the loo after attempting to stand. When "off" her legs are stiff, the left foot turns inward and the action of taking a step causes pain, especially at the rear of her thighs. After several attempts, sitting on the shower chair between times, I used the wheel chair to take her out to her TV chair where she is using the powered pedals to flex her leg muscles.

Prior to seeing the PD nurse in Hot Air City on Wednesday, I captured her on my camcorder doing needle work on a quilt, shuffling behind her trolley while both "off" and "on", perched on the loo with sweat dripping off her head and her hair in damp rat tails. She was happy for me to show the PD nurse the videos, which had been recorded onto a micro SD card, fitted into my Android tablet which was positioned on the nurse's desk for viewing. We are 21st Century patients! The PD nurse wants to see her again in 3 months time, expecting her to make a decision on whether to have DBS or apomorphine. I think the PD nurse suspects she will be more comfortable with an apomorphine pump rather than a hole drilled in her skull. Although her medication is twice what the PD nurse feels is "normal" the comment was that there is little dyskinesia. The pain in her legs is mostly due to the excessive exercise from tremors and the sweating, swallowing difficulties are autonomic problems. Response to my leading question about future autonomic issues seemed to be avoided. The PD nurse agreed that the severe cramping, now largely gone since she recommenced Magnesium tablets, was due to excessive sweating, loss of salts and lack of salt intake but I was puzzled that the nurse (I will call her "Polly", not her real name) was unaware that Vitamin B6 interferes with the uptake of Sinemet. We must find magnesium tablets without the gratis B6. Until she returns in 3 months time she was asked to take Comtan, beginning with her 2pm meds and we are to report the effects immediately, for which we were given Polly's card with phone, mobile & email. I think I will report this afternoon by email to minimise the phone messages, Polly receives too many mobile calls. We were unable to get a script for the Comtan until late Thursday when we also had our flu injections from the pleasant Asian lady doctor we now see when our nominated GP is booked solid, as always. So she began Comtan at 2pm on Friday. She said she felt squeamish some time afterwards but no mention of tingles in the back of her head and the "someone walking over my grave" feeling I believe she experienced when she was on Comtan some years ago. There seemed to be no reaction yesterday. Her weight decreased from 82 kg to 77 kg over about the last 6 months. Polly doesn't wish to see any further weight loss.

We had arranged for her to attend Respite yesterday, Saturday, while I went to the computer club but she cancelled out of Respite after I detected she was somewhat fearful of going on a bus trip planned for the day. So we both remained home.

Chapter 283 - Mobility

Monday last to Hot Air City to see my urologist who says he will leave me to managed by my GP, after a stiff finger salute. Prior to that visit we called into the Independent Living Centre to see and learn about various wheeled commode/shower chairs. Also incontinence aids. All very interesting. The therapist told us we may be entitled to assistance from EnableNSW, another of those organisations/government bureaucracies/NGOs that sufferers and their carers should be aware of, just approach an Occupational Therapist (I assumed the term implies work place initiated problems) in our local town for advice. So the following morning (while she was at Respite) I saw someone at the local Community Nursing (or is that called something else?) for advice on finding an OT (I'm just slack) so that person made an on-line referral for us, saying "they are rather short staffed and busy so you may need to wait several weeks for a response." So what's new? In passing, to establish our credentials and credibility, I mentioned that an ACAT Assessment had been made in 2011 and she was entitled to 63 days per year of "high level care" to which comment was asked "Are you registered?" To which one can but answer "Well, I suppose so, we received a letter saying approval was given." "Well you perhaps should ring this 1800 number and check, and that way the formalities will be out of the way, so speeding up a request for respite." So next morning I rang the 1800 number, to be surprised I did not enter a queuing tunnel, speaking to a pleasant human voice immediately. The person understood my needs, looked for her details, and unable to find such searched on mine which were found, then discovered that one letter had been left out of her surname (which of course is the same as mine, but one letter makes a hell of a difference to a strict name search). That done, I was asked whether I had 40 minutes to spare to answer questions. Of course! I suspect longer was needed, since I am sure I digressed anecdotally from time to time, and once or twice another phone, constantly ringing in the background, needed answering. That place, wherever it is physically, seems short staffed as well. I learned a lot from the conversation, including that there is only one bed available to be assigned to emergency respite needs, often places are offered at a coastal town, several hours drive from here. Apparently, if I need to be absent and she needs respite then I can deposit her at a care facility, bed available, in a town along the route to somewhere. This assumes I have not been run over by the proverbial and she has no known to care for her. Seems the structure matrices are there yet the interstices are large (Oh dear, I have tried for years to use those words ;-) Meanwhile, we wait quietly for contact from OTs who I believe live in the building behind the local hospital where she attends her Falls Group physio sessions most weeks.

Returning to last Monday. What with visiting the ILC and seeing the urologist neither of us had eaten so I suggested we call into a McRubbish on the way around town in mid-afternoon. While there I wondered whether a window shop around the adjacent centre interested her. At first no, but then enlivened by the food, she said "Yes, let's go to BigW." So we did, she pushing her walker all over the place until my feet burned with the unusual exercise, there was no stopping her, although at a slow pace. Must have been the lack of crowds and the wide aisles. We spent $100 on "stuff". On the way out we stopped for iced coffees. I resisted the temptation to enter a techo super-market.

About a fortnight ago she her legs became itchy with small bumps along the calves of first one leg and then the other. I immediately suspected over application of Ice Gel which she had liberally applied to ease the pain of leg cramps, for the itching only occurred where the Ice Gel had been rubbed on. Since she began taking magnesium tablets there has been little need for Ice Gel. Of the 6 tubes of Ice Gel bought on-line some months ago only one remains. So she applied ant-itch cream as well as damp hand towels, which she must have rubbed on her legs because the skin became very red and began breaking. Then she tried packets of frozen vegetables for which I substituted some "ice packs", those things used in Eskys on picnics, which helped a lot, tied onto her legs with tea towels and a velcro strip ex Wii Fit green mat, which gave me the idea for her to make long wide ribands with velcro at each end, yet to be used because the itching has subsided.

From time to time she complains of heat radiating from the ceiling onto her while she is in bed. A little worrying since we have infra-red heating in the ceiling, yet it is now late summer and no heating has been switched on. I am unable to sense any heat. Also she sometimes thinks she feels rain drops falling on her while in bed.

Her Tuesday respite group won a local singing competition. I took a photo of her group holding the quilt they made and entered into the local show.

Yesterday family visited from Big Smoke. We shouted lunch at the Club as a belated birthday party for the youngest. We arrived early to lay claim to two tables where she was most comfortable. When the meal was finished others needed to prowl the shops, so we followed behind until she was unable to push her walker any longer so I switched it over to wheel chair mode, which she hates, until her meds kicked in enough for her to walk and push the walker again. This is the second time we have suffered a similar experience with others rushing hither and thither, not buying anything, me bored out of my brain and she unable to walk, so in future we will not oblige. People can visit us, two old farts at home, or nowhere, although we may make exceptions.

Query - what's the difference between shopping yesterday afternoon at a similar time to last Monday at BigW? Crowds? Space? Walking surface? Time of eating? Damned if I know!!