Chapter 306 - Painful Times

On 12 August, the day before we left for the short drive to Hot Air City, I had her tick boxes on a spread sheet in an attempt to record when she experiences her pains and tinglings. By the end of the day she became somewhat irritated having to remember to tick boxes every half hour. The forms were handed to the neuro on the Thursday.

Yes I know these are lousy images but I handed over the originals to the neuro, so allow your browser to enlarge them.

This week she has suffered by delaying her meds by 1/4 hour each dose time. But how can we "measure" suffering? It's all so sodding subjective! She seems so solidly off any time after 15 minutes delay. On those occasions when she needs to return to her adjustable chair, or needs the loo, when meds are due, she shuffles her feet, sometimes dragging her right (I think) along the floor. Her leg and foot pains frequently bring tears to her eyes. Muscles in her thighs even become "lumpy" she says.

One day she mentioned that the soles of her feet show white blotches when she is in most pain. She noticed this when her feet twisted (dystonia?). You know me - I took photos.

During the period in which these photos were taken she remained seated in her recliner chair but with her feet down. The scribbled notes indicate the feelings in her feet when each photo was taken. The last photo was taken after her feet were on the circulation booster for 1/2 an hour when the pain had eased but some tingling was still present; look closely to see the indentations in the soles of her feet due to the dimples on the foot pads of the circulation booster. Notice the even colour tone after using the booster. Also, but not evident in the photos, the tips of some of the toes on her right foot were purplish in the earlier photos. I made an appointment for her to see Dr Flower next Wednesday; any sooner was impossible because the locals have discovered that she is an excellent doctor, so is booked solid.

She has a hang-up about taking pain medications; doesn't wish to become "addicted"; tends to take Panamax only when pain is severe. Friday night going to bed, I coerced her into taking two Panadeine Forte. Yesterday on waking she said she had a better night's sleep and I think she only got up once. Last night I asked her only to take one Panedeine Forte at bedtime and to take 1 or 2 Panamax each med's time but I'm unsure whether she has done that.

Earlier in the week she began falling asleep during the day.  Late morning on Thursday she woke in her recliner, feet raised, and attempted to get off it. The chair tipped forward, not dangerously, but she was unable to right the chair or get off it. Fortunately I was close at hand. That's an unforeseen defect with the chair for which I have some ideas about prevention.

Also on Thursday I needed to rescue her at the loo. She called me on the CB 4 times during the day; each time she had raised her incontinence pants part way, unable to complete the task while hanging onto the fire man's pole for grim death. She repeatedly said "I think I have gone backwards". That Thursday night - Friday morning she called me 5 or 6 times to help her stand beside her bed and pivot her onto the commode.

Friday evening she went to bed for comfort about 7pm but read novels until about 10.

She was not up to attending physio on Monday afternoon, although she went to respite on Tuesday. From there she brought home some crocheted quilts which she is repairing for sale on their stall. Mixed wool/polyester problems and moth holes need repairing, so she snips out the faulty squares, makes new ones and  crochets them into position. Her hands still become stiff and sluggish by mid afternoon.

She frequently has difficulty swallowing her pills; needs to drink lots of water; even then the sensation that something has stuck in her throat persists for some time so I give her a small quantity of ice cream to remove the feeling. Today while shopping I intend to get custard, apple sauce or such like to aid her take the pills in the first place.

A friend invited us to a Saturday afternoon community gardening group yesterday; I have repeatedly declined in the past. He says  the paths are wheel chair friendly etc etc. I told him in an email that there is more to PD than tremors. He says we are becoming recluses. He is correct.

But now off to our regular religious event, lunch at our local club. She even mentioned yesterday that we will go as usual.

Chapter 305 - A Clayton's Holiday in Hot Air City

She skipped respite at the Sheltered Workshop so we left home Tuesday lunchtime to have a relaxed trip drive to Hot Air where we checked in to the usual motel we stay at. I had printed a Google map to prove to her that this particular motel was only a few km's from both hospitals we were to visit. I think I mentioned last post that she had been dead set about staying in the accommodation at one of the hospitals so that she could have been close to her appointment place on Thursday. By all reports staying at the hospital was sure to be a disaster. Anyway, the motel has changed hands again, the disabled rooms have been re-modelled and the restaurant is not satisfactory. And we skipped the complementary breakfasts each morning because she was not up to walking there to appear in public. I suppose breakfast delivered to the room was an expensive option but we are happy with dried fruit and a cuppa.

My visit on Wednesday to the Eye Hospital was very successful so my left eye is now marginally better than the right. Being a pleasant sunny day, she opted to remain in the vehicle during the time I was in the Eye Hospital, from about 10:30am to almost 2pm during which time she did not need the loo; neither during the time we detoured via a shopping centre, until we returned to the motel about 3.30pm.

We had to share a queen/king size bed at the motel, covered in an enormous doona weighing literally tons. Each night I was woken probably twice (I'm a bit hazy) about 2am and 4am; each time because of her violent tremors lasting perhaps a minute, beginning gently, reaching a crescendo, fading away then suddenly ceasing. What parts of her trembled I'm unsure, I don't think she kicked or swung her arms.

Early to the appointment to see the Considerate Neuro, she argued that the sign said not to enter the waiting room until 15 minutes before our appointed time. Be damned to that, of perhaps 3-4 dozen seats available we swelled the number of waiters to maybe 7 or 8. Quite soon Polly the PD Nurse came for us, rather than the Considerate Neuro who she was to see first, and ran her through the usual familiar Parky tests then into the neuro. He put her on the spot asking whether she preferred DBS or Apomorphine as the next stage in her treatment. After some hesitation she opted for the latter, although allowed her 'druthers, she prefers neither. In the interim he suggested she delay each medication dosage by 15 minutes, so she takes medications at 6am, 10.15am, 2.30pm, 6.45pm and 11pm. She began this new schedule yesterday, Saturday, and this morning she told me she had slept straight through. An encouraging sign!

After the hospital we had some fast food lunch before wandering  a Big Store, where she bought some pyjamas with a slippery texture in preparation for a hospital stay I imagine. A good sign I thought.

After a room service meal back at the motel I checked my emails and found a message from Polly giving the contact details for a PWP recently introduced to Apomorphine. I rang and they were agreeable for us to visit them at home the following morning. With the aid of the GPS we had no difficulty finding their place on the other side of town, although the route taken used most of the complicated intersections and roundabouts around the CBD, not much to her liking. we found the PWP and his wife a most friendly helpful couple. I had prepared a long list of questions, answers to which came out in our conversation to and fro as we shared our experiences back and forth. Checking my list now I see that some details need to be clarified. Although the PWP's medications are not yet finalised, and he shows evident signs of PD, my better half was quite surprised that he was able to stand for long periods (from her point of view), able to move around easily, sit and stand easily, especially since as far as we understood, he was quite frozen before. Yet he is unable to attach the needle to himself; his lady has to do that, he has difficulties with fine motor activity in his fingers. Not a problem for us I thought since she is still able to cope with fine sewing, stitching and cutting for her various embroidery, sewing and craft activities. My qualms about the diffusion pump and the needles were largely dispelled, especially when the PWP said there was no pain involved, although he may have been referring to a more expensive type of needle rather than basic "insert at 45 degrees" type. But cost is not uppermost in our minds. We left them not clear in our minds how much "conventional" medication he is still taking.

We lay in bed this morning discussing the issues. She fears the intrusiveness of injections and wonders about the efficacy of patches.

I hope she can make a decision ASAP. I tell her she must contact Polly soon. She says she won't be going to our grand daughter's wedding in November in her present condition.

And we left her bed pole behind at the motel.

Chapter 304 - Is Life Getting Harder?

Some mornings I have returned to the bedroom to find her standing at her bedside crying in pain. Her legs and feet.

She has stopped taking Metamusil in fruit juice each evening but there seems little change in her nocturnal frequency. For instance last night, 4 times on the commode after going to bed at 11pm.

Last night I was very tired so went to bed just before 10pm. She needed to stay up until her 10pm meds kicked in enough so she would not be too uncomfortable in bed an hour later. She only woke me for help once, but see below.

Lately she does not wake me very often at night to assist her onto the commode. Partly because she has been unable to wake me I suppose; she told me a few mornings ago that she called out to me for half an hour one night; unsuccessfully. You will understand her plight when I say that I use a CPAP, I take out the hearing aid from my left ear while I'm in bed, and I frequently have an ear bud in my right ear to listen to the BBC news to stop my mind re-circulating thoughts while attempting to return to sleep following a disturbance. Perhaps I need to rig up some sort of alarm for her to wake me.

Around 4am this morning she woke me unintentionally, yelling at the top of her voice for 5-10 seconds, I think perhaps about a car accident, the words were distinct yet I don't remember them. Then at odd intervals she muttered indistinctly. Lately the words she speaks during these episodes are more distinct. In the morning she remembered a dream (strangely, she usually does not remember her dreams) about driving her "little yellow car" (her pride and joy of years ago, a VW Beetle), our kids in the back seat and a fox terrier dog running amok inside, her yelling at the kids to keep the dog under control. Perhaps.

Next week we need to be in Hot Air City for her double appointment on Thursday to see her neuro and PD nurse (the bureaucracy brought the first appointment forward by 3/4 or so and the second by a week; too early and too much stress all in one day) and co-incidentally, I am experiencing additional cataract problems in my left eye following  macular "peal" and cataract problems about 2 years ago so have an appointment Wednesday morning at the Eye Hospital; expecting to result in laser treatment, hopefully that same day. I was prepared to drive back and forth the 100+ kms each day but she decided we should stay at the hospital where her appointments are. They have over night accommodation. I usually leave her to arrange our accommodation arrangements. So she made arrangements for us to stay 3 nights. When I checked with her whether the facilities were "disabled" or not, I learned that she had been told by the hospital staff that the rooms had twin beds and since "disabled" facilities were required, we would be given a room close to the toilets down the hall. I'm afraid we had a minor domestic while I pointed out at home she needs the commode at least 4 times a night, usually urgently, often requiring help to get on it, yet she was prepared to walk down a passage to get to shared toilets, possibly occupied, without even contemplating shower arrangements. I told her to ring a friend, who had used the hospital accommodation, to be told "the facilities are rather basic and yes, the toilets are down the hallway". So I  printed out a Google map to show the proximity of the motel where we usually stay to the Eye Hospital and the General Hospital, pointed out the "3 nights for the price of 2" offer and burdened her with the chore to make the bookings there. Well the "3 for 2" offer was only for normal rooms, not "disabled" rooms and such only have queen sized beds, not singles, so she handed me the phone to sort it out. By this time I was spitting chips so the motel person, possibly to pacify me, offered me a discount from $160 to $120 per night, which I accepted.

She wanted to stay in the hospital accommodation because she would be able to walk to her neuro appointment, thus reducing her stress by saving on travel time in traffic. I think I need to organise away from home accommodation in future. I must remember to pack her collapsible wheel chair and collapsible commode.

She flatly refuses to return to our honeymoon coastal town to reminisce about 50 years ago, and she is far from keen to travel south to our grand daughter's wedding in November. Memories of panic attacks during return trips down there come to my mind. There will have to be ways around such events, at least the trip is 4 lanes all the way now.

Yesterday at our PD Group meeting I had hoped that the person who thought a visit to speak to someone using apomorphine was not mentioned. And I didn't bother to ask the person; just talk I suspect.