Mac and Jill

Again I offer apologies to those that have contacted us to see if everything is OK. I just seem to run out of time or energy to sit at the computer and write about the past week. I even missed putting a mention of a huge milestone for Michael – his 40th birthday last week end. He had a meal with some friends and family – wish we were there to help celebrate. We have finally had the builder back to remedy the problem we had with the levels on the new ensuite floor and Jill has given it the thumbs up and without telling me she headed of to the shower unaided yesterday. We still have a change to make to the outside entry to the room – we are going to reverse the sliding door and add a deck and ramp – this will give Jill easier access to the gym and the pool. Then I have to paint the other bedroom and the old entrance to the bathroom where we plastered the walls.

We have been doing the exercises including the vocal exercises Jill had from the Parkinson clinic she attended a couple of years ago. I was checking back on her performance which I had taken note of and to our surprise the length of time she could hold an “ah” were very similar and I am certain the volume is almost the same. I just wish she could transpose that into every day communication. We have been using the Wii and Allison mentioned a game that was available to help keep the brain active. I received an email from Qantas Frequent fliers and noticed they had Nintendo DSi available that you could cash some points on. This week in the mail we received a DSi and a couple of Dr Kawashima’s Brain training games. We both have brains of an 80 year old. The games are great relying on sight, sound, speed and memory. There is a passage that you have to read aloud. I guess if we use it regularly we will both improve. Jill has used it a few more times than me – even when I am up the street. I will keep you advised as our brains come back to that of a 40 year old. We may even give the kids a run for their money.

We had a phone call on Friday morning from St Catherine’s. Mum had had a bad night and she had a fall while getting to the toilet and they found her on the floor very cold. They got her back to bed with some heat packs to warm her up. They were concerned that she had a UTI infection as she was delirious so they had called an ambulance and taken her to hospital. When I got there she was in outpatients on an IV and monitors. She knew who I was but other than that she didn’t know where she was or anything else. She spent the rest of the day getting antibiotics and fluid. As the day progressed she became more with it. Keiran asked her what year was it – answer December 1996 and she didn’t know what day. They finally got her a ward bed at about 8pm Friday night. I went to see her Saturday morning and the difference was noticeable although she could not understand why she couldn’t get out of bed. I guess I will see a better patient when I go up this morning.

We were Skyped by Jeannette and Gavin from Kakadu last Sunday and they were having a great time and were heading to Darwin the next day. Jean came to see Jill and told us she had spoken to Joan in London and we are going to get her here to Skype Joan – just need to organise the time zones. Allison, Chris & Chris and Nicole are all getting packed up and ready to head off next weekend to head to Hervey bay and Fraser Island and that fantastic tailor. I actually have the van ready as well but Jill has a couple of Doctors appointments this week that may stop us. She has an Urodynamics study to be done on Thursday at 5pm

Another mile stone for Allison and Chris - Happy birthday Chris - you will be able to relax when you get to Fraser Island and start fishing . Have a great time

Well I hope that I can say that we are heading off in the van in the coming couple of weeks – fingers crossed

See you next week on the net

Yes another week has gone – they seem to fly past. We arrived home from Bendigo on Tuesday evening. The Jeep was partially fixed, cruise control works, but they have to order parts for the electric windows. Also the windscreen wipers are making a clicking noise and on my inspection I suggested that they adjust the travel of the blades so that they stay completely on the glass. However I was informed that they need to replace the motor as it cannot be adjusted – not under warranty – cost $1100 – so I will put up with the noise. We picked up Jake on the way home and met Jessie at the front door – she must have heard the car in the driveway. Thanks Lorna for looking after her.

We had several messages on the phone when we arrived home. Four were from my mother or actually one of her friends at St Cath’s. I had not rung to say I wouldn’t be there on Monday as usual so she was worried. When I got there on Wednesday I found out she had had a fall and had hurt her arm. We will need to keep an eye on her to see that she gets some attention for it. She also has a mild dose of the flu – not swine flu.

Wednesday was Jill’s visit to Wang X-ray again, this time for an ultrasound of the bladder. Now we have to wait for an appointment with the urologist.

We are still waiting for our builder to come back and rectify the floor. We received a new drop down hand rail for the ensuite. I have to fit it this week. I have also fitted some extra rails in the van – used hand rail brackets and 20ml chrome rod. This will make it easier for Jill to walk the length of the van. Originally we only had a rail on one side.

Well I had better get this uploaded – see you next week on the net.

This week seems to have flown – usual exercise and here it is Sunday already. We have had a couple of doctors’ visits for Jill. The results for her blood and urine tests all came back and as the doctor said the results were very good, every thing where it should be as well as no UTI. Jill’s comment was with such good results why do I have MSA? My thought was perhaps we are getting some good results from the stem cells , maybe they are helping controll your system . Small improvments are huge in the scheme of things.

Following that we headed to the X-Ray lab and had Jill’s knees photographed internally once again and will get an appointment with the orthopaedic surgeon in the next couple of weeks to see what can be done. We also had a visit from Suzie from CPAT @ Home and had the air pressure in Jill’s unit lowered back to nine, hopefully that will help with the leakage around the mask. We certainly had a better night last night.

I still have my front lawn covered with leaves, looks like they are all on the ground – so I will have to collect them for mulch. I had intended to mow them up with the mower but it is not being very cooperative, takes a lot to get it started and I found that it affected my operation after getting it going last week – so will hold off a few more days.

This Blog will be much shorter as we are heading off to Bendigo today. Our car is in for some warranty work on Tuesday morning. Jake has been booked in for a couple of days at the Pet resort at Glenrowan. Jess is going to stay at home alone although I guess she will be spoilt by Lorna.

The other reason for the trip to Bendigo is to see Chris & Nicole’s new Jeep , picked up yesterday.

Well we had better head for the hills – see you next week on the net

Short week and we are back. We have concentrated on exercising this week, with the builders etc gone it has been easier for Jill to get out the back to the gym. Although I think it has had a bit of effect on her left knee, which has been aching even when in bed. I have been heating a wheat bag on the microwave for her each night. I forgot to mention a warning last week. As I just mentioned I have been heating the wheat bag in the microwave. Well the other evening I put it in and set it to the normal 3 minutes on high only to walk back into the kitchen with Michael holding the heat bag with smoke pouring out of it and the smoke alarm shrieking. I took it from Michael and as I went out the back it burst into flames, I threw it onto the lawn and turned the hose on it. Talking to Jill about it I remembered someone saying that if you use the microwave to heat the bag you should put a glass of water in with it to keep the moisture content in the wheat. I assume that heating it day after day the wheat becomes drier and eventually it does not take much to catch alight.

We have had the floor looked at and the decision how to rectify it has been made so I guess we will be interrupted again for a couple of days while that takes place. We have to get the Jeep looked at and we may head over to Allison’s for a couple of days while that is done. The Jeep has a couple of warranty problems, cruise control will not resume after brake applied and the drivers side electric window is not working properly..

This week started with Jill giving stacks of blood at the pathology lab and we will get her results on Tuesday when we go back to the specialist. I picked up the caravan and had the Trail-A-Mate hydraulic jack checked because it was leaking oil. They replace the seal but said that it still had a small leak and it was probably manufactured in China and the tolerances were not that good for the seal. I backed the van up the drive and used the jack to lift it off the Jeep and sure enough it was leaking. I put the side supports down and removed the jack and stood it beside the fence. Next morning I came out to a pool of oil under the jack. I rang the caravan repair bloke but he could offer no solution so I rang the manufacturers and with in 5 minutes he told me my problem, the solution and 10 minutes later problem solved. Apparently if you over tighten the release valve you drag the seal forward and consequently it leaks.

I have repacked the caravan and changed the amount of items we would carry with us. I have another safety rail to put in the van for Jill during the week.

Friday I had to go to Benalla to see the specialist who had done my Wii operation (prostate) and I got the OK. No signs of anything that will cause me grief. He just told me to take it easy over the next 3-4 weeks i.e. No heavy lifting etc.

Jill has been listening to Macca and has just called me so she can get into the shower.

I had better go – so we will see you next week on the net.

I’m starting to feel guilty at not having our Blog up to date. A couple of phone calls to see if everything is ok as well as meeting people while shopping asking about the Blog. With builders, painters and electricians around our routine has been fairly well disrupted.

Last weekend Chris, Nicole and Michael arrived home for mother’s day. While they were home I got them to help move us into the new bedroom and ensuite. They took us out for dinner at Code Orange restaurant for Mothers day and in general spoilt Jill. Michael cut and coloured Jill’s hair on Monday morning which was very much appreciated.

Jill has refused to let me do any lifting and I have become frustrated as there is lots of things to do , leaves are falling and the front lawn is now a carpet of Autumn leaves , colours look great but need raking and mowing .- will make good compost once they have been put through the lawn mower. The carport still has lots of rubbish there even though the builder cleaned up.

On Thursday we had a check over by the OT staff and we have a slight problem with the levels in the ensuite floor and that has to be addressed. I had already spoken to the builder about it and at the moment we are coping with it but as Jill said, the ensuite was to help with her independence but at the moment because of the level difference she is not confident to enter the ensuite on her own. We will have the builder and the floor layer back this week to see what can be done.

Last weekend before Chris and Nicole arrived, our neighbour came in to apologise, a visitor while backing down her drive had turned too early and collected the new fence. I won’t tell you what I thought. Jill was impressed that I retained my temper. One thing I have learnt is that I need to count to 10 more often that ever before.

Jill has had to cope a lot the last few weeks with the builders, visitors and just the interruption on her life and it has taken a tole and we have lost our way in handling what life has bestowed on us. I am hoping that after this coming week we can get back to normal (our normal life). Exercise, both physical and vocal are ever so important. Jill needs to go to the urologist and back to the specialist re the CPAP machine. She has had that for about 8 weeks and we have gradually been increasing the pressure each week and currently are up to 10 (range is 0 to 17). As we go to the next pressure it takes a couple of days for Jill to adjust. She will not admit it but the CPAP works. Suzie from CPAP @ Home checks in with us each week and downloads all the information from the microchip. She is able to tell if we are using the machine, what hours, the amount of air leakage from the mask the number of times Jill stops breathing. Initially that was around 50 and with CPAP it is down to 14 and is gradually coming down.

Chris and Allison arrived on Saturday afternoon and we had some of Jeannette’s pork chops with V8 vegetable juice and basil for dinner. We watched the Swans and west coast football match. Fortunately the swans won for Allison’s sake. We again went out for lunch on Sunday at Hollywood’s. During Saturday evening we had a Skype call from Jeannette and Gavin – their last call from Rosebud before they head off for their around oz adventure. They left at 8am on Sunday and were to spend their first night at a free camping site near Stawell – called Canadian Gully Bushland Reserve. Some time ago I purchased a book called Camps 4 Australia which lists all the rest areas, free camps, national parks, state forests and low cost caravan parks – some 3000 listings and it includes camp snaps so that you get a visual preview of the sites before you arrive. There is probably a 5th version out by now. You can also check their Webb site for up-to-date information. WWW.campingaustraliawide.com

Jill has to go to get a range of blood tests this week and I have a check up from my urologist following my opp. So I guess this week will be slightly disturbed again. I hope to bring the caravan home and perhaps think about a trip away after the success of Eildon at Easter. The kids are heading for Hervey bay and Fraser Island for the last week in June and early July. Jill would have loved to head off with Jeannette and Gavin , but Hrevey Bay may be the alternative. We will have to see  what the next couple of weeks bring our way.

Photos of our Easter Adventure

Jill is after her breakfast so I had better make a move.
Fingers crossed we will see you on the net next week.

We are back on the net after a week in hospital for me and some recuperating at home. I went into Mercy Private in Melbourne on Tuesday after Easter and spent 4 days there and Chris brought me home last week end. This week has shown me that I need to rest a bit each day.

Allison came home and spent the week I was away with Jill and she certainly enjoyed having her here. Allison probably didn’t sleep that much worrying about Jill getting to the toilet at night. Cooking meals and preparing food for the freezer. So we hope that she has also had a week to recover. Obviously others thought I should rest and on Tuesday Jill’s sister Jeanette arrived to be with us. I appreciate the thought that goes with the visit and not only for me but more for Jill. She needs company other that me.

As I mentioned the Builders have been here since Easter and I must say every thing looks just as I imagined it would. Allison and Jeanette have got to know the builders, plasterers, cabinet makers by first name and have had to endure, power off, water off and being up early to move cars and lots of noise from saws, nail guns, planers and sanders. It was probably a pleasure when 6pm arrived and it was too dark for them to work, no lights or power in the back half of the house, and the house was again quiet.

This coming week will see the electrician finish off, the painter in on Tuesday and finally the carpet layer here on Thursday to complete the job. Everybody will be home at the weekend to celebrate Mother’s day and help move beds around and help Jill decide on what she wants in her new wardrobe and drawers.

We have been spoilt with some of Gavin’s sourdough bread which Jeannette brought with her and I remembered seeing some at the Sunday market and I just made a visit to the market but alas no bread and all I came home with was some Pink Lady apples, pears, strawberries and a couple of stop a drip tap washers for our shower.

Jill has just got into the shower – finding it a little difficult with the corner vanity as well, she can’t wait to try out the new ensuite.

See you next week on the net with all the completed pictures