Mac and Jill

We have survived another year and have both decided on some new goals for 2012. Easter and off to Hervey Bay  are amongst those goals.  When we look back on 2011 we have been lucky to to be able to achieve what we have. A fantastic family and friends to help Jill through this lousy disease. We have tried different things and we are still here and both have each other which is most important. We celebrated our 46th wedding anniversary on Jan 1st 2012.

Christmas was a wonderful adventure for Riley and there are many more to come. We had Michael and Amanda for a few days after Christmas and then we packed the caravan and headed to Doreen ( Riley’s house)  to baby sit on New Years eve. He went to sleep and did not make a peep. However every time I went into check he was facing  a different direction. The weather became very unpleasantly hot so for the last couple of days we slept in the house. The air conditioning unit needs looking into so before we try any more trips thats my next chore. Jill loved the attention she got from Riley as he loves the wheel chair and off course Jill. Lots of hugs and kisses

The two Jayco Camper families ( Chris, Nicole & Riley in their Outback Dove and Allison & Chris in their Outback Hawk) have set of for a couple of weeks away. Stopping for a few days at lakes Entrance and then onto Eden on the NSW south coast. Riley is having a great time in the Dove and at the beach. We are receiving lots of videos and photos it is almost like we are there.

Pat & Keith are back after their trip to Kym’s to have Christmas and new year with the kids. Hamish is still having Chemo. We got to see him throw the first ball in a baseball game between the Gold Coast Bandits and a Melbourne team. He also gave high fives to all the team. Euan and Erin were the bat boys-girls for the game as well.  Pat & Keith drove straight through ( 18 hours) and were extremely tired .

We have had a busy week this week as Jill had the Physio and OT therapist on Monday to discuss – the electric lift chair , the transfer chair – shower to toilet – the chair is slightly high for Jill – as it needs to be higher than the toilet seat, and takes a bit for her to get seated. I think they may have to observe Jill using as the suggestions of powder on the seat so Jill will slip easier or an extra step so that she is in a better position are still not the whole solution. They have also discussed and measured Jill for a more suitable wheel chair – more comfortable and supportive. They are back in late next week with a couple of wheel chairs to try.

I am anxious about Jill getting into the Jeep and hope the Milford Lift can be installed soon. We went to the O&K speech office on Monday and I had trouble getting Jill into the Jeep to go and once we had completed the session I decided that we would have lunch at a new cafe on the river before heading home. Everything went according to plan until we reached the car to come home. The extra exertion that it requires Jill to step onto a  portable step then into the Jeep was too much and her legs gave way and she slumped to the ground – it took her a few minutes to come around and we sat on the step for about 15 minutes before we made the next move. With a bit extra lift I got her into the seat and thankfully headed home. It took her most of the afternoon to recover. The lift will be available before Easter – so a trip to Melbourne to have it installed.

Jill has started a intensive round of speech – LSVT Loud is the version of speech therapy she is on . She is doing a 4 week – course – the therapist will see her 4 days a week and then we do the exercises as home work. It is amazing that Jill responds so well and the voice level and clarity improves immediately .  It will depend on how it affects her voice over the longer time. The therapist is concerned that it may cause some damage to the vocal cords – so she is monitoring it closely. It is tiring and the going to the centre is an extra problem. Currently it is two days at O&K centre and two days at home.

We had the District Nurse yesterday to change the catheter and then the speech therapist – that takes a lot out of Jill. Today we have the speech therapist at 2pm so she is having a sleep in this morning . Pat and Keith brought us several containers of strawberries and I have been making Jill strawberry and yogurt smoothies for breakfast.I have used the last  strawberries this morning so will have to come up with some alternatives – at least they are healthy.

I had better get her into the shower

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I have been attempting to write the blog for a couple of weeks. It is amazing how busy you can be and not getting much done. We have been getting ready for the family to arrive for Christmas as well as continue with the various therapists visiting. We have also had the occupational therapist here demonstrating an electric lift chair – measuring Jill so that she gets maximum benefits. Our carport looked like a furniture shop with several chairs and couple of shower transfer chairs to try.  Jill moved from electric chair to chair , one to deep so no support for her back , another too high from the ground to her knees, another to low in the back to support her head. Finally like the three bears she found the right one – and would have fallen asleep if we had been inside. The transfer chairs were similar – we had to find the correct combination of size and height to suite both the toilet in the bathroom and the one in the caravan – again with trial and error the decision was made. On the Friday before Christmas I received a call from the rehab suppliers and they delivered the transfer chair. The Lift chair will be about 3-4 weeks after Christmas – we decided on a leather finish – more comfortable, matched existing furniture and easier to keep clean. The next thing will be to update the wheel chair to a more comfortable and supportive as Jill is spending more time in it.

Well the time arrive with Riley and his parents arriving late in the afternoon followed by Michael and Amanda – weather was very hot and it wasn’t long before they were in the swimming pool. Riley kept us all amused and finally was asleep. Christmas arrived with the sound of Riley stirring – he was great as we had to wait for Allison & Chris to arrive at midday before opening the gifts under our tree. However as a granddad I couldn’t wait and suggested he be allowed to open the gift that his Aunty Pat had left for him – a remote controlled Jeep. I am certain Chris and I got as much fun as Riley did.

By the time Allison arrived he was ready for a nap so we had Christmas Lunch and he slept. When he awoke the presents were distributed but watching Riley was the best gift anyone could have. Late in the afternoon it was time for Riley to head back to Doreen as he had an early start next morning to visit Marg & Peter his other Grand Parents. As Chris headed back home a very heavy storm front passed directly over their home and the power was out when they arrived home. while they were on the phone describing their trip home the power was reconnected. Fortunately no damage occurred to their home. The rest of the family kept our spirits up for the rest of the day and today, Allison and Chris leaving about 4pm after playing a round of golf with Michael and Amanda. We were treated to an exceptional meal this evening prepared by Amanda – a chef by trade.

Pat & Keith have headed up to the Gold Coast to be with Kym and her family for Christmas. Hamish is still receiving Chemo therapy and Pat was keen to be there for the next week.

Boxing day Birthdays must be one of those that gets missed with Christmas so close. Jill’s brother is one of those.  HAPPY BIRTHDAY BARRY.

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To all our family,  friends and fellow MSA sufferers.

Jill and I would like to wish you and your families

A MERRY CHRISTMAS – for yesterday  25 Dec 2011

and

A HAPPY NEW YEAR  - 2012

Love and kind regards

Jill & Mac

Support “I Have a Dream … Cure MSA (Multiple System Atrophy”) Even though we speak different languages and are of different cultures, we are united in battling MSA and we truly hope in miracles. One day they will find how to cure MSA.

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The weeks pass by – we have had  a few days away.  We received a message that the heater for the caravan was ok to be reinstalled. We decided to extend the trip from Shepparton  to Bendigo – visit Allison & Chris then head to Melbourne to Riley’s . The trip was to include a couple of nights in the Park Lane Caravan Park in Bendigo and then overnight at Riley’s for the Jeep to be serviced on Monday. Things never go that easy – we arrived in Shepparton and had the heater reinstalled – still not working -although it was working in the work shop and the only thing they could put it down to was the gas regulator on the van. We headed off to the caravan park – expensive and dirt site no concrete slab then it rained just as we set up. Continued to rain most of the night and next morning – step out of the van into mud – not a happy camper. We went to Allison’s and were surprised that Chris and Riley were there. Chris was there to do some work on Allison’s Kinder video.We played with Riley and after dinner we headed back to the caravan. Next morning we had intended to pack up and go to the Leisure Fest Camping and caravan show in Bendigo. I hooked up the van but found that the caravan lights were not operating – even though I had power. Finally contacted RACV but the chap could not find the problem suggested we see an auto electrician on Monday. After discussing our problem with Chris and Riley we decided to head to Melbourne with Chris riding shotgun and have the Jeep serviced as planed then get an auto electrician on Tuesday morning. This gave Jill another day with Riley.

It was great to have another visit with Riley and he has certainly started to speak – when asked to take something to Grandma he heads straight to Jill saying “Grandma- Grandma” Jill is a different person when he is around. While we were there Nicole decided to set up the Christmas tree with Riley and Chris helping. Riley handed the branches from Chris to Nicole as well as the decorations. We wonder wether they will come out one morning and find all the decorations on the floor – only time will tell.

Caravan fixed and we are on the way – faulty plug on the Jeep was the cause.  We arrived home late in the afternoon. As usual Jessie thinks it is great to have us home even though Lorna has spoilt her with some fresh fish.

The last couple of weeks we have had speech therapist decide to slow down the LSVT program and instead of two sessions a day -as this was too much – down to one . Back today to access the progress. Volume and strength appears to be better. We are using an iPhone app – to measure the volume . The Occupational therapist took us to try out an electric lift chair and has a couple of more coming here  for us to trial next week.. She also arranged for shower – toilet transfer chair for us to try. Jill has been having trouble getting from the bed to the toilet especially at 4am in the morning . We tried it in the ensuite as well as the caravan – looks good. The other chair we had been trying in the kitchen was going great but over the past few weeks Jill has developed a lean to the right – which is reverse to what we had with our other chair. I came in the other day to find her asleep and leaning over the arm rest. She also does this when eating meals. The physio has suggested we might be better with a better quality wheel chair which will have more lateral support and be more comfortable for longer duration. She will come here on Tuesday with the OT and discuss our options.

We have had a lot more trouble getting into the Jeep and are now hoping the Milford lift gets the go ahead very soon – we have been contacted by the OT , SWEP and Mobility Care the suppliers – so fingers crossed.

Jill has two visits today – district Nurse to change catheter, Speech therapist to check progress.  Next week is busy – blood tests, doctors appointment, OT, Physio and speech therapist. the following week is FREE than heavens.

Well it is 8.30am and as the nurse and speech therapist are due this morning I had better get Jill into the shower and ready

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The last month has seen a trip to see Riley, trial of the personal vehicle lift, a return of the Lymphatic massage, LSVT speech exercises and most important of all a birthday.

We went to Melbourne – to Chris & Nicole’s place to see Riley of course, get cuddles, kisses and high fives. It amazes us how he has grown even though we see photos and videos every couple of days and on Skype once a week.

We also had an appointment to trial the Milford personal vehicle lift. Kate their representative came out to Chris’s place and showed us how it operated. Very impressive, Jill was lifted out of her wheel chair into the Jeep and then out again. The main component is stored in the back of the Jeep and only weighs about 8kg. The only problem is the 3-month delay in getting Government assistance and having it installed.

Jill has celebrated her ?? birthday – not allow to mention the number of years. We had Jean for the afternoon with a great sponge birthday cake.  Jill now has a new hair dryer to replace the one that didn’t like being bounced off the kitchen floor and a new nepresso coffee machine that uses capsules for the caravan. It comes with a milk frother, which does an amazing job. She was woken up with a series of phone calls starting with Michael and they made the day – just to hear from the kids makes her day. No need for presents. On Saturday afternoon her visitors arrived – starting with Chris, Nicole and Riley followed by Allison & Chris and the smile didn’t leave her face for the weekend. Watching Riley play and chase Jessie (cat) around the house kept her alive. They all left a couple of hours ago and she has gone off to sleep in her kitchen chair.

We have a couple of things to do to the van over the next couple of weeks and then we will take it to Bendigo for a few days.

I have finally got all the programs on my mac – Photoshop, Word, X-cell and Power Point – this has allowed me to get my photos up to date and lets me use them on the blog.

As you see a range of photos over the last couple of months.

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