Six years ago Jill undertook an amazingly brave venture. We set off from Australia to Shenzhen China – not knowing the language or what to expect other than a possibility of stopping or slowing down this lousy disease MSA. Well here we are six years later still looking for that elusive cure – but still here. We have journeyed through many difficulties and had some great high times as well. Weddings , birthdays, anniversaries and the best of all the arrival of Riley – two years ago. Low points – the passing of my mum , being in hospital with a broken leg – unable to go to the toilet or shower when you want – they have to use an electric hoist to lift you from the bed into a shower /toilet chair . Jill says she has lost all her dignity over the past six weeks.
The past couple of weekends we have been able to come home for a few hours , enjoy each others company and some home cooked meals. We were home on Saturday and Sunday this last weekend and we had roast chicken and roast vegetables – I think my meals are a bit better than those served in the hospital. I am getting the nod of approval from Jill. I think she just likes being home. When I arrived at the hospital on Sunday morning to pick Jill up every thing was in partial darkness. The power had gone off and only some of the rooms had power. The hospital were installing their new MRI machine and obviously something went wrong. When we arrived back they were moving patients into different areas as the power was not expected to be back to full power until late Monday. In Jill’s ward one whole wing was out and they had to move those patients into the lounge/kitchen for warmth etc.
She still has a nasty blister on her ankle where the cast slips down to and rubs. I had not seen it until last night and They are going to get a doctor to check it this morning. Fortunately because it is a clam shell type cast it can be removed to check her skin etc although unfortunately it is held there by velcro straps and every time they move her in the hoist the cast also moves. Early this week we are hoping the x-rays will show some positive results and the cast can be removed. Then the extensive physio will begin on her leg and if everything goes to plan she will get back on her feet.
Our electric bed is supposed to be arriving middle of the week – fingers crossed as that is one of the main things needed at home for Jill – She keeps saying “I don’t need it” , so all I say in return is that it’s for me. Our current bed is probably 20 years old.
Jill’s sister Jeannette & gavin are on their trip around Australia and currently are in Longreach. This was gavin’s last email:
Hi from Longreach,
The picture is Jeannette up close and personal with a bullock train.
Having a great time. The Outback QLD is an experience not to be missed with a lot of characters one just doesn’t find in the “big smoke”.
Well I had better get myself organised and up to the hospital and see how things went over night.
See you soon on the net.
Hello, still following Jill’s progress with the leg. Just thought I would update you on Ron’s treatment, he is now on a 6 week chemo treatment. Goes to Royal Melb Monday afternoon then chemo Tues then home Wed am after blood tests. They found that Chemo helped people with MS, so our Dr Yan is trying it on Ron, has Jill had this treatment? Had one dose so far, hands are steadier and eyesight slightly better, and legs feel stronger. lets hope it improves with the doses.
Keep well Love June
ps It is a girl.