Re: Pam's response to Phil

[Guest guest]

Pam,

I agree, we want input. All of the studies I've seen have one basic fault with

term of life expectations - they seem to extrapolate the term from too small a

sample. The paper yesterday says the median is 9.5 years from onset for 100

patients, but only 41 of the patients had died. But five years ago a major

website said SDS patients had only 7 years to live on the average. Does that

mean life expectancy has gone up 2.5 years in only five years? Charlotte could

well have died in 1998 if we had not insisted she go to the ER, does that mean

people on the list who know to take the patient to the ER and insist they have

an infection, can live more years.

This group can help their patients live more years, just by knowing things like

signs of infection; helping the patient with exercises; and being there for

them. As you say the patients themselves can learn and help themselves by

exercising regularly so muscles don't forget what to do and doing as much as

they can for themselves.

) Hey Fordy!! The patients can also learn to use wheelchairs as soon as they

start having balance problems to save themselves trips to the Emergency Room for

stitches and broken bones ) , print this and show it to Fordy!

Pam, I added some of Jim Todd's links, the symptom links will take longer as I

want to pick good ones. Feel free to add or delete any you feel are redundant

or not appropriate.

Take care, Bill and Charlotte

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Pam Bower wrote:

> Hi Phil,

>

> Sorry you've had a bad day today. Your note is full of info though as usual

> so thanks for posting today.

>

> You said: " There are a number of papers which I wanted to share with the

> list but when I asked for permission to circulate them electronically it was

> refused because it 'could upset those who read them'. "

>

> I'm not clear who you asked for permission... were these articles something

> you just got from your doctors today? If these are published articles then

> the abstract could be found and posted. They are public domain and don't

> require permission from anyone. Usually, if you want the complete article

> though you have to pay for it and they are copyrighted and you aren't

> supposed to post without permission.

>

> In my experience the vast majority of people who've unsubscribed have done

> so because they got too much email and lots complained of not enough

> scientific information and too much irrelevant chit chat. I know many who

> were diagnosed sporadic OPCA who have clung to that diagnosis and refused to

> join this list because they don't think they have MSA... later their doctors

> actually told them it was MSA. So in alot of cases the confusion about the

> name of their disorder has isolated them from the support they could gain

> here. I've also had people write to say they found the list too depressing

> particularly when they read news of members who've passed away. Most of the

> written material we pass along to members takes a stab at estimating life

> expectancy... I don't think we like reading numbers like 7 to 10 years but

> researchers have persisted in writing these things. I'm not sure there is

> anything you could post on here Phil that we haven't already seen or will

> eventually see just by looking around on our own. MSA is no picnic and I

> think we all know that. I don't think any of us sugar coat the information

> that goes out. We tell it like it is and hope that people will heed some of

> the collective advice we share from our experiences.

>

> I read somewhere once that it's been shown scientifically in some diseases

> that belonging to a support group can extend you life. Certainly knowledge

> is power and knowing what to watch out for can help with managing symptoms

> and extending your life.

>

> Love,

> Pam

>

>