Hi everyone

March 13, 2001

,

Have seen a number of your postings on Petra. Do you know which type you

have yet? My 4yr. old sounds just like Petra, with the see through

skin, dark circles. and he complains of tummy pains all the time, and legs

and feet. Thank God I have read this list and now know that his pain are

real, and not just " growing pains. " We have the Type IV, and I also have

this exact skin, dark circle looks, but have also come to understand that so

do people with the other types. Just curious, as I catalog all this

information in my head, probably in the hopes of doing some kind of real

stats someday. Love, Sue Ginley

March 14, 2001

,

Thanks for your e-mail. The way you describe Petra looking is exactly how

Elliott looks; extremely pale with red rings around his eyes. When I saw my

rheumatologist he said that Elliott had the typical posture of the EDS

person, his stomach sticks out even though he's extremely thin and his spine

curves in which I imagine is also very similar to Petra, maybe this does

cause their stomach pain also.

Elliott is exhausted by the end of the day, and sometimes doesn't make it

through the school day, having to sleep for an hour or more in the medical

room. Because on top of EDS Elliott has PFAPA , a periodic fever syndrome he

is in hospital approx every eight weeks. The docs think that both the

conditions combined leaving him feeling really run down, hence his

appearance.

I know what you mean about feeling helpless, I feel the same. We just have

to be there and be strong for our kids and enjoy any good days they may have.

We are being referred to counselling to help Elliott feel more positive

about himself and not view himself as constantly 'sick', hopefully this may

help. Could you maybe get some help in this area?

Anyway I wish you all the luck in the world for your visit to Toronto in

April, let's hope the outcome is positive. Please let me know how you get

on.

Take care

Love from

Sally - London, England

P.S. I visited Toronto about ten years ago and stayed with a friend in

Bramalea (I think that's how you spell it!!). We had a great time, it's a

beautiful place!!

March 15, 2001

Hi Sally thanks for your response , it feels good to know that I'm not

crazy.

Please keep intouch about Elliott, he sounds like a very nice young man.

HOw old is he and maybe he would like to write to Petra she she is always

looking for penpals

they could even email each other , They could maybe cheer each other up.

Re: Hi everyone

> ,

>

> Thanks for your e-mail. The way you describe Petra looking is exactly how

> Elliott looks; extremely pale with red rings around his eyes. When I saw

my

> rheumatologist he said that Elliott had the typical posture of the EDS

> person, his stomach sticks out even though he's extremely thin and his

spine

> curves in which I imagine is also very similar to Petra, maybe this does

> cause their stomach pain also.

>

> Elliott is exhausted by the end of the day, and sometimes doesn't make it

> through the school day, having to sleep for an hour or more in the medical

> room. Because on top of EDS Elliott has PFAPA , a periodic fever syndrome

he

> is in hospital approx every eight weeks. The docs think that both the

> conditions combined leaving him feeling really run down, hence his

> appearance.

>

> I know what you mean about feeling helpless, I feel the same. We just

have

> to be there and be strong for our kids and enjoy any good days they may

have.

> We are being referred to counselling to help Elliott feel more positive

> about himself and not view himself as constantly 'sick', hopefully this

may

> help. Could you maybe get some help in this area?

>

> Anyway I wish you all the luck in the world for your visit to Toronto in

> April, let's hope the outcome is positive. Please let me know how you get

> on.

>

> Take care

> Love from

> Sally - London, England

>

> P.S. I visited Toronto about ten years ago and stayed with a friend in

> Bramalea (I think that's how you spell it!!). We had a great time, it's a

> beautiful place!!

>

March 16, 2001

Hi ,

Great idea about the penpals. Elliott is five and a half years old but has

great difficulty in writing because of hand and wrist problems causing poor

fine motor skills. However, he enjoys using the computer so if Petra

wouldn't mind typed letters that would be great. I am quite new to this net

business, is it safe to e-mail your home address via this group or should we

contact each other's private e-mail for postal addresses? Let me know what

you think.

Hope Petra is well today.

Take care

Sally

June 18, 2008

I have a real problem. This man is flaming me and stalking me taking

everything he finds to abuse groups and is telling all sorts of lies

and manufacturing things. This morning he posted this.

From: Dr_Goáts (Original Message) Sent: 18/06/2008

08:39

....I am actually going to try and help Presto.

After reading her moving account of mental disorder and brain

malfunction here..

http://www.plwp.org/virtuality/200310/patp.htm

I have written to the editors of The Thistle

http://www.lewybodydementia.org/docs/newspdf/nl200409.pdf

Enclosing half a dozen or so of Prestos vilest posts including those

where she rips into Boo doubting her cancer and where she thinks its

funny to mock people with HIV. I have asked them if this sort of

behaviour could be a side effect of the treatment she is receiving

and if they can do anything to help. I've told them we have tried

but it only makes things worse, and how she has hooked up with a

repulsive bitter old man and how they encourage each other. I said

that as they had her contact details and experience of possible side

effects perhaps she might take some notice of them and seek help.

This man started years ago starting with my Parkinson's then he

learned about my lewy body disease. He has also attacked others for

such things as Tourettes and Interstitial cystitis. I am afraid of

what he might do. I don't think he really did this contacting and

think it is a bluff, but I want the right people to know about him

and what he is doing. I haven't been writing here because of him.

The same goes for my Parkinson's support groups. Any ideas or help

you can give me would be appreciated. He is a bully and I would like

to put a stop to him doing things like this to people. They are all

really nice people. This is all sarcasm from him. He is a very mean

and viscious man. If someone could warn the Lewy Body. Org. I would

appreciate it. His real name is Plenty and he is from

England.

Thank you for listening to me.

Big Hugs to all

Patti

June 18, 2008

Hi Patti,

Sorry to hear that you are being bothered by this idiot. I will keep an eye out

for anything from him. You rest easy. Sending you strength.