Five cents worth from wombat

[Guest guest]

aka the wombat:

Welcome back as a poster. I have missed your insight and hope you are able

to stay.

I am really sorry to here about 's decline as you clearly are also.

But you are also a realist. Let's hope the bedsores can be eliminated.

I also share your sentiments about the life of the list, except for being

pissed off. Your thoughts were well stated. I am an also an engineer with

all the pluses and minuses that go with that profession. Thanks for being

back.

Message: 25

Date: Wed, 19 Jun 2002 01:10:00 -0000

Subject: Five cents worth from wombat

Hi

Oh dear, what is happening to this group?

This group needs a set of rules that are automatically posted to the

group from time to time. Maybe there are rules, if so, I haven't

noticed them. One rule should be - if someone decides to go OFF-

LINE, then it STAYS OFF-LINE. That is common courtesy and decency if

nothing else. Last November, I wrote to Pam, OFF-LINE, saying I was

pissed off and would no longer be contributing, but would read the

digests. That communication stayed OFF-LINE, as it should have. I

read the digests most days. Certain people, I will always read what

they have to say, others I never read them. Am I right? It doesn't

matter, we are all individual, we all have our little idiosyncrasies.

I have been a Carer for 10 years now, the last 5 pretty full on, and

sadly, time is running out. More about that later. I have learned

so much about MSA, about it's medications, about being a Carer, which

is why I developed my web site. I still maintain the web site and

get a reasonable amount of hits on it. For example, my last week's

stats were:

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Weekly Statistics For Previous Week

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Account number 2404841, MSA, had a total of 86 visitors last week.

Visitors for last week divided per weekday:

2002-06-10: 5

2002-06-11: 14

2002-06-12: 13

2002-06-13: 27

2002-06-14: 14

2002-06-15: 4

2002-06-16: 9

I'm very pleased with that. I also get quite a lot of emails as a

result. I always reply and ALWAYS recommend they join this group.

Some have, some I don't know unless they contribute. Why am I

telling you this? It is because I feel I have 'done my time' and am

qualified to comment.

When I first joined this group, I was already an experienced Carer,

and wasn't expecting to learn a great deal more than I already knew.

I guess I was looking for like minded people who were 'suffering' as

I was, and I found them. But I also found that I did learn some

things especially from Bill Werre and Fisher and Pam Bower was

a 'must read' also. Good information (except when they were talking

about stupid cars, birds, flowers, weather, jams, etc) - only

joking!

When Charlotte died, Bill Werre decided to continue in the group and

I take my hat off to him. When my dear wife dies, I will unsubscribe

from this group. I am SO tired (aren't we all!) and wrung out that I

am going to have a complete break. I will maintain my web site.

Later, I will write a book about it all. But I am going to try and

enjoy life for a while, I feel as though I have earned it. You need

people like Bill. Sure he can be a pain in the ass, so can I, we all

can at times. I mean, the guys an engineer and we all know engineers

can be a real pain in the butt. But it is his engineering discipline

that drives him to learn what he does learn and how to disseminate it.

The recent episode was unfortunate. I do believe that if it had

stayed off-line that it would have been resolved without damage. But

once it went public, it was doomed. Remember, if someone sends you

mail off-line, then leave it off-line!!

I have a little free time at the moment, which is why I am sitting

here typing to you. went into respite care in hospital

while I went into hospital for an operation on my leg.

Unfortunately, she developed bed sores and they are keeping her in

until the bed sores heal completely.

is really struggling now. She is quite disabled, her speech

is virtually non existent, she can no longer point to the letters on

the alphabet board, all food, drink and medication is via the PEG.

In fact, I believe that it is the PEG that is keeping her alive. Her

Neurologist is astounded at her determination to keep going, but I

feel, time is slowly running out for her. Mentally, she is still

very good, but I am noticing some change there also. In addition to

the MSA, she has a serious anxiety problem, which is separate from

MSA. She has lived with an anxiety problem all her life and

controlled it very well. In the early days of MSA, her neurologist

warned her that the medications she needed would not help her anxiety

problem, and he was right.

I think I have rambled on long enough. I have made some recent

changes to my web site that may be of interest to some off you.

What was the expression the dispatcher in Hill Street Blues used to

say? Something like 'take care out here'?

____________________

Regards

aka the wombat

http://members.optushome.com.au/wwwombat

Sennewald Charlottesville, Virginia