Guest guest Posted June 19, 2002 Report Share Posted June 19, 2002 Hi All - I know I haven't been keeping up much lately, but we've had to put dad in the hospital and it's been kinda hectic. His electrolytes and potassium levels are all screwed up and they can't seem to get them under control. Is that typical with MSA???? He has good days and bad days = guess that is pretty typical. Thanks to those of you who gave me the info on organ donation. I've contacted Vanderbilt U and am waiting to hear from them. I just hope that my dad's contribution - whenever it may come - may be of benefit to other sufferers. Barb S from land 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: > > > > ---------------------------------------------------------------------- > > ------ > > Weekly Statistics For Previous Week > > ---------------------------------------------------------------------- > > ------ > > 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 > > > > > > > > > > If you do not wish to belong to shydrager, you may > > unsubscribe by sending a blank email to > > > > shydrager-unsubscribe > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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