Week 122 ” We need to get on with life”

How the world can change in a week – share market melt down – our dollar drops to record lows. I was listening to Macca this morning and one of his callers was from Canberra and she talked about the devastating fire that destroyed 500 home several years ago. She mentioned how thousands of trees had been planted ,homes rebuilt and with time things recover so we need to get on with life.

We have had a great week down at the net ball courts this week. On Monday while we were walking , with Jill using one crutch and me holding her hand on the other side she lifted the crutch of the ground and used it to balance her as she walked – six steps before she put the crutch down. On Tuesday that was extended to 20 steps and by Saturday she was doing approximately 100 steps – one net ball court – she is extremely proud of her self and when we spoke to Allison yesterday I was reminded to tell her. Our walks at the netball courts have been a bit more entertaining as well with all the horses back at the show grounds. This is a striking difference to last year when they were all banned because of the equine virus. It was interesting watching young girls preparing their horses and fathers trying to get horses back into their floats – with the odd word of encouragement. The show rides and the noise certainly made walking very interesting. Jill’s concentration is put to the test when a horse whinnies just next to you. Jill’s physio is back fro a conference in South America and will be here on Thursday so Jill will want to show her new ability.

This week also brought forward another item – Stem Cells and China. A couple of weeks ago, once Jill was all clear of her infection we sent off her registration forms and on Tuesday we received a proposed date of treatment – Nov 2- Dec 2, 2008. We decided to have a second check on the infection and make a final decision. On Saturday morning we got the news that the infection is back and she has restarted the antibiotics which will be completed and tested before the end of October. On advice from our medical consultant Dr Monique West in China we should complete the antibiotics and continue with the stem cell treatment. This weekend is the MAKE THE DECISION time. The other thing with the drop in value of the Australian dollar there has been a sharp increase in the cost of the treatment as the treatment is charged in US$. Example when we enquired three months ago $1US= 93cAus as of yesterday $1US = 65cAus.

We have had a couple of emails from Barry and Margaret travelling in Europe – They were in Spain and Portugal – sounds as though they were having a great time. Pat and Keith had taken her grand kids down to Lake Tyers for the last week of the school holidays where they had a whole new experiences and memories to keep.

I had the chance to hone one of my new skills – dying Jill’s hair – I’m glad that we have Michael who is the hairdresser. I do not have the patience to do this as a profession.

We received an email from Sharon and her parents – Sharon’s dad gets his last stem cell treatment on Monday and they will be back home next weekend. She mentions small changes they are seeing in her dad. We continue to receive emails or phone calls from other ataxia – MSA sufferers and it is great to have somebody to talk to going through the same experiences that you are. People like Karen & John, Trevor , Sharon and her parents, Connie and her husband and many others offer us their comfort and encouragement to keep going .

Macca is about to end and Jill is ready to get up – so I had better get off the computer or I will not be too popular. I have been doing some family tree investigation this week and spent lots of hours on the net.

See you next week on the net.

Jill resting at netball courts with horse floats behind tree line at Wangaratta Show 2008

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