I’m sitting here feeling sorry for my self – have developed a cold which went straight into my chest and I have tried to avoid passing it to Jill and anyone else – Obviously not the swine Flu but still a swine of a flu. I haven’t been to see mum for a few days, I had to last Thursday as she had an appointment with the optician. She is getting new glasses and I hope that it will help her with reading, watching TV and playing games at St Catherine’s. We are to collect them on Friday. I wish her hearing was better even with her hearing aids talking on the telephone is nearly impossible. She tells me Keiran rings her each Sunday evening, so I wonder what she hears and says.
We have had a pretty quiet fortnight; Jill had another visit to the orthopaedic surgeon last week but no miracles out there – she will not recommend knee surgery as she feels Jill’s lack of balance will probably cause more problems with the knee replacement. So we have gone back to wearing a knee support brace – either an elastic support or a strap on depending where we are going. MSA is one of those diseases that you just fight each symptom as it arrises and hope that you don’t cause another side effect with it. We have had some wins along the way. The CPAP works great even though Jill says it doesn’t work – I know it works ( I can sleep with out hearing her stop breathing) Stem Cells have given us extra time – with some improvement in speech , writing and balance. I read on the net where there are some trials in Germany.—”Does a treatment with Minocycline of 2 x daily 2 x 50 mg effect the progression of clinical symptoms and diagnosis in patients with MSA?”
I’ve also heard of an upcoming trial at Yonsei University in Korea in which they will be using Mesenchymal stem cells for treating MSA. (The ClinicalTrials.gov Identifier is NCT00911365). These are the same stem cells that Jill received in China last November.We will keep our fingers crossed and HOPE that something comes through.
Our kids arrived here last Monday evening on their way home from Fraser Island and Hervey Bay. Allison’s Chris had had a virus and collapsed on Sunday and was taken to hospital via ambulance – however a couple of hours on oxygen and fluids saw him on his feet again – Certainly scary with the Swine Flu around. The four of them finally left Hervey Bay late afternoon and stayed overnight in Dalby. They then drove to Wangaratta (16 hours) and arrived here about 9pm Monday. They were straight into bed and off early next morning. Forgetting the last little event they had a great time, caught plenty of fish, and trying out the new four wheel drive. Their CB radio call signs are Fraser and Hervey. Jill and I have watched about 4 hours of video footage of driving the Jeep around the island and catching fish. They are just making us more envious. Our van is still poised at the ready.
We received another Skype from Gavin & Jeanette – this time from Broome. It is some 30+ and enjoying themselves. They saw the “Stairway to the Moon” the other night which can only be seen when the tide and full moon coincide. They were rapped that they had seen it this time. Nicole’s Mum & Dad left for their trip up through the centre and across to Broome and the west coast on Wednesday – another reason to feel a bit left behind.Jill’s listening to Macca and Jess has climbed up on the table and is sitting directly behind the laptop screen. I think she is willing me for food.
See you next time on the net