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
See you soon on the net
I found your website today and have been reading about Jill’s journey. My father was diagnosed with MSA a few years ago and he is at a similar stage to Jill needing a cathetar, wheelshairs and general assitance with all movement. I have been living in Oz the last 4 yeas but am returning to the UK next month so I am able to help my family. If you have any recommendations on daytime activities, interests and hobbies that Jill is still able to pursue I would be interested to hear.