Re: Joking on the list >BillWerre

November 21, 2002

Bill:

Many thanks for the review of the list background and the need for humor

below ***********.

Any feedback from the DC Group meeting last Sunday?

*****************

Many of us who have been on the list for years kid around to break the

tension of losing so many friends over the years. All of us need to

find a way to deal with losing friends as we are in a war with MSA, and

as in any war - we lose some. I am to the point where I have very few

of my original friends left from March, 1999 when I came on the list.

Many of them are on Charmayne's wall of rememberance

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HREF= " http://freepages.health.rootsweb.com/~charmayn/memorial.html " >http://freep\

ages.health.rootsweb.com/~charmayn/memorial.html</A>

Charmayne's husband died only days ago, but she was a great help in

setting up the resouces we now have available to us. The first group

had few links to go by and always struggled to find info. At that time

Jeff Millman had the only real webpage devoted to SDS and he has since

moved on to raising his child who was born about the time I came on the

list. Of the list members we had in March of 1999 I can only think of a

few still on the list - thankfully Barb Selleck and Barb have

remained on the list as well as Pam and others are still living but can

no longer write. Rose - our resident speech therapist also lost her

loved one, but is now busy with her twins, so there is life after MSA.

I do call Anne Pledger a couple of times a month and it is always a joy,

as she is always so up in spite of all her problems. She has been an

inspiration to all of us, even after dealing with severe autonomic

failure for over 23 years. She now has a pacemaker to help her stomach

move food through it and is dealing with a disc problem so she can not

write emails as she is bedbound. I did get an email after I sent

flowers from the list and she said to thank all of you for your

thoughts. I did get to meet Anne and her family when I visited

Australia in May of this year. I stayed with Anne and Tony and even

went up to her daughter 's home in the mountains. I also saw

and Ford ( died in August) and Bill Pilgrim while

I was downunder. I stopped for half a day in Los Angeles, on my way

back (Barb was kind enough to pick me up and drive me out) and met

a bunch of our Californians at Fred and Vera's home. BUT I kept falling

asleep during our meeting I had been in airplanes or airports for the

previous 24 hours as I flew from Gold Coast (AUS) to Sydney, then from

Sydney to Los Angeles without sleeping - so I was wiped out. Vera

will NEVER let me forget that

There are others who we do hear from once in a while such as Harriet in

Hawaii and Becky (who lost her husband/caregiver to a drunk

driver). But they are unable to type anymore. Others like

have had to go on with their life for various reasons - kids, selling

homes, etc. Relles and Ramm still put jokes on the list,

but " The bird lady " is busy running her farm now and no longer puts up

jokes.

So feel free to join in with our joking around. The friends we make

here are true friends and in spite of our little differences, we are

friends. Even though we have never met in person, we have touched each

other's lives. I miss Barb Selleck's little attachments which died

because some idiots insist on sending viruses.

To our Aussie friends - I hope all of you are wearing your magnetic

boots so you don't fall off Petrol (gasoline) was a trip there also

it seemed cheap at 75-80 cents (a litre) but it still took so many

(often 40) to fill the tank And if you buy a burger it is often

made of chook rather than beef But my sense of direction was always

loused up downunder - in the USA the sun is always to the south,

downunder it is always to the north. No wonder they drive on the wrong

side of the road

I just hope politicians will think long and hard before they vote on

things that affect our lives so heavily. My grandson who was eight when

Charlotte died, said to me the other day " Grandpop, I have trouble at

times remembering what grandmom looked like. " He sees pictures of

Charlotte like the 1958 photo at

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and the Christmas 2000 photo at

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Thanks Charmayne!

Take care, Bill Werre

Sennewald Charlottesville, Virginia

November 21, 2002

,

Not a lot of feedback. We had two new members to the group, Jo who

brought a friend Cathy and Collette whose father has MSA. You also

missed meeting Margaret. There was some frustration voiced about slow

diagnostic proceedures. Unfortunately as we know, since the disorders

are all so similar, you must wait for a bunch of symptoms to show up

before they can determine exactly which you you probably have. Most of

the members and newbies have been seeing different people, but Dr.

Reich, Dr. Pincus and Dr Sigmund keep showing up most frequently for

this area. There seems to be a secondary group who have worked with

those doctors and can diagnose brain disorders.

Other than that we just chatted and nibbled on cookies which Terri gave

us. Hohn was not doing well - still getting over his latest UTI. Terri

said today that he took five steps with his PT. So hopefully he has

beat it again.

How are things in Charlottesville? I may be down there over the

Thanksgiving weekend - if so I will call you ahead of time.

Take care, Bill

Sennewald wrote:

>Bill:

>

>Many thanks for the review of the list background and the need for humor

>below ***********.

>

>Any feedback from the DC Group meeting last Sunday?

>

>*****************

>

November 22, 2002

Bill:

Terry is still having what appears to be significant respiratory

distress. Neuro tells us it is MSA and FTD being antagonistic with each

other. Results is trying to hold breath - freezing - and trying to breath

at the same time with many audible sounds; e.g. gasping, etc. Sounds

awful, but we are assured by lots of tests and by neuro that it is not life

threatening. Interestingly, if the family shows concern in front of Terry,

it exacerbates her symptoms. We are all learning to stay cool in front of

her - it is referred to as shielding the patient. The FTD is affecting her

executive function, and she becomes seemingly emotional at times; this

appears to be frustration at not be able to do what she feels she should be

able to do.

Please do call if you think you will be in the area Thanks giving

weekend. Sorry I had to miss the new members and not meeting Margaret last

weekend. Recent events have put me way behind schedule. It has been

awhile since I have been on the chat room.

Message: 21

Date: Thu, 21 Nov 2002 18:35:27 -0500

Subject: Re: Re: Joking on the list >BillWerre