We recieved another photo of Riley and it makes us even more excited about Christmas. it is like returning to the christmas’s when our children were Riley’s age. Waking early on Christmas morning just to see the look of suprise and excitement as they opened theit presents. Jill’s a bit like Santa she wants to give him everything. Just seeing him on Skype is a present for us.
This week we did something we haven’t done for a long time. Michael suggested having lunch at the new Performing Arts complex cafe . We arrived about 12.30pm and were able to park close by thanks to the disabled sticker. We had a realy nice lunch but Jill actually said I made a better coffee. Following our lunch I suggested we go across to BigW to get a couple of Christmas presents – not thinking she would agree. However the next thing we were heading across the road and into the carpark in the wheel chair. We made our way around the isles and collected presents for Riley and because we are doing a Chris Kringle with the rest of the family we were able to complete some of the shopping. While we were there we met a friend Nora and talked for a while before continueing shopping. Jill actually enjoyed shopping as she always did . All I have to do is convince her that I need to shop for presents at Bunnings which opened this week.
Floods have come back with avengence – Ovens river reached 12.75 met on Friday and caught some unawares. The local caravan park was evacuated in time but I see a car with only it’s hood exposed in Apex park. Pat and Keith brought lunch for us on Saturday and told us some stories about the floods out at Oxley Flats and they have decided to return via Oxley as the water was a bit high that they came through.
It was Allison’s birtday yesterday and to celebrate they had tickets to the BonJovi concert in Melbourne- guess we will hear all about it.
Fisher men have many and varied experiences – but probably not as terrible as what happened to Jill’s brother while trout fishing on the South Island of New Zealand last week. He had a fall and broke the two bones directly above the ankle – It took him 5-7 hours to get out of the river and back to the road. Crawling, hopping and draging himself. It is hard to imagine the agony he must have been in. If you want the full story you will need to talk to Barry or if he follows our suggestion in a future copy of the Readers Digest. He will be in plaster for the next 6 weeks – through Christmas and his birthday( Boxing Day) – All the best Barry.
I have all the ingredience for our Chistmas cake and Toblerone Cheese cake – Jill’s special so under her strict supervision I will endevour to produce two varieties – one standard and the other Gluten Free. I will let you know how they went.
Yesterday on the Yahoo – MSA group – Vera and Pam listed the :
TOP TEN THINGS YOU NEED TO KNOW ABOUT MULTIPLE SYSTEM ATROPHY
These are things not normally highlighted in traditional literature about
Multiple System Atrophy. This list was compiled from the collective
experience (since 1995) of hundreds of members of the shydrager online
support group for MSA founded by Vanderbilt University Autonomic Dysfunction
Center staff and currently hosted at http://groups.yahoo.com/group/shydrager
I thought that was important to include these in the information about MSA ( in the Blog Heading)- We are fortunate that Jill does not have all the MSA symtoms. With the nature of MSA it appears that you can have a few or all of the symtoms and the anology of MSA is like Neapolitan ice cream (vanilla, choc, strawberry). Every Scoop (patient) is a little different.
Think of MSA as the 3 flavoured ice creams called Neapolitan which has
vanilla, chocolate and strawberry all mixed together. Imagine if you
took one scoop of that ice cream and put it in a dish, then took
another scoop and put it in another dish and compared the two dishes.
You would notice that there is not the exact same amount of vanilla,
chocolate and strawberry in both of the dishes.
“Multiple System Atrophy” is the same as the Neapolitan ice cream.
There are three flavours included in MSA:
1. Shy-Drager Syndrome (SDS) – Think of it as the strawberry ice cream
2. Olivopontocerebellar atrophy (OPCA) – Think of it as the vanilla
ice cream
3. Striatonigral Degeneration (SND) – Think of it as the chocolate
ice cream
Whether someone is told they have SDS or OPCA or SND they all have
one scoop of Neapolitan ice cream in their dish. They all have
Multiple System Atrophy.
If their symptoms are mainly orthostatic hypotension or urinary
incontinence they have mostly strawberry ice cream in their dish
(SDS). If their symptoms are mainly cerebella ataxia they have
mostly vanilla ice cream in their dish (OPCA). If their symptoms are
mainly tremors they have mostly chocolate ice cream in their dish
(SND). If they have all of the above symptoms then they might have
nearly equal amounts of chocolate, strawberry and vanilla in their
dish
Jill loves icecream but she would give it up to be free of this disease.
Well I had better get Jill up and showered – see if I can convince her that Bunnings has Christmas gifts for Riley
See you soon on the net.
I am very interested in MSA for more than one reason. My father had it and started showing signs in his seventies. At the same time, my mother had Altzheimers. They both had lengthy illnesses prior to their deaths. I am now almost 78 and have had various symtoms of both diseases over the past few years.
I am trying to keep up with new information and development of treatments. It is now getting to the point where I can no longer disguise my symptoms or ignore them. I would like to keep in contact with you or your group, as a way of getting new information.
I certainly hope your therapy will benefit Jill and your granddaughter will give you as much pleasure as mine has given me. Have a very merry Christmas.
I’m grateful that you have this blog- I found it today – my brother, Peter, was diagnosed in October with MSA. He is 69 and the drs. think he’s about 1/2 way through (in term of life expectancy with this illness). It’s been very hard for his wife and our mother (88 yrs old) and while there is still time to enjoy life – the future seems pretty scary. I do read as much as I can to learn about this condition – – it helps to know what to expect, it seems that those who suffer from this condition have many symptoms in common, there are so many different things that go wrong and so many different ways to deal (or not deal) with the challenges. Thank you for sharing your experience and may you, Jill and the rest of your family find happiness during this holiday season. I will continue to monitor your site.