LOOKING FOR POEPLE IN S A WITH PSP

[Alfrieda]

i am 63yaers old.I am denosis with PSP IN Jan. Neurplogist saud there is no cure.I walk difficult, swallow and chochs alot. Even my eyes is not moving.

[easterncedar]

Hello, Alfrieda. I am very sorry for your diagnosis, and that you have occasion to join us, but I am glad to welcome you. There is no cure, it's true, but research is going on all the time, so there is hope. Do you have help at home? It's an impossible disease to manage on your own. I see you are from South Africa. I don't know South Africa at all, but there are a few folks here do.

Please feel free to ask anything here, talk about what you are doing and dealing with - or even about things that have nothing to do with PSP. This is a good community, and we will always be glad to hear from you and help in any way we can.

Love and peace, Ec

[Alfrieda in reply to easterncedar]

Thanks, Just to know there is poeple that have the same disease. Here in Eshowe nobody knows about it. Ido not have help every day.

[easterncedar in reply to Alfrieda]

PSP is really pretty rare, although so often misdiagnosed it's clear that it's not as rare as they used to say!

There is a lot of information available on line and through the curepsp organization (curepsp.org) . It can help you inform your doctor about it. (If your doctor isn't pretending to know all about it already...)

Are you safe at home? The falling can be so dangerous! (Even if a person isn't on her own.) Whatever you can do now to provide support at home is good - to clear away obstructions in pathways, cover sharp corners on furniture, to put fragile possessions safely out of the way. That sort of thing.

i just looked up Eshowe. It appears to be a beautiful place, but not very populous. Do you have good medical care in town or do you have to travel far to see your neurologist? We live in Maine, in the northeast US, in a small town, and had a three- hour drive to Boston to see the neurologist, but our local doctor is very good, and there is a new large hospital in town that serves a large surrounding area. After we had exhausted all treatment options, we stopped seeing the neurologist, anyway.

Peace, Ec

[Alfrieda in reply to easterncedar]

Good morning from Eshowe.I am safe at home. I got a alarm system in conect with neibours, We travel every 3 mds to Ballito to see te Neurologist.Here is a a hospital and few GPs.

I do not like poeple must hel me, on if I ask. My husband helps me dress before he goes to work.I did have a couple of falls.I get very upset with my self can`t do thing I normally do. Every movement of my is very slow.

[easterncedar in reply to Alfrieda]

Good morning to you, Alfrieda. I'm glad to know you are safe at home. It's very hard, the way PSP challenges a person's independence, and makes every ordinary action more difficult.

May I ask how long ago did you get your diagnosis? Many people go years before the doctors figure it out. For us it took about three years of tests and appointments and that was pretty quick. My sweetheart was diagnosed in 2011.

I just looked up Ballito. I am so ignorant of your part of the world, and am sorry about that. The photographs online show such amazing beauty, The conservation areas around Eshowe seem spectacular and rich in interesting birds and butterflies. Is it as beautiful as it appears?

Here in the north we stll have snow on the ground and we are waiting for spring to come and bring the birds back and to put leaves on the trees. I love winter, but am ready to get out into the garden.

Best wishes from the other side of the world,

Peace, ec

[Vissie in reply to Alfrieda]

Alfrieda there is so little that can be done for patients with psp. Contact me so i can phone you..

[Christine47]

Under your name tab at the top of this page next to your "picture" is a dropdown menu with a section "people near me." There is one other person who lists South Africa, maybe there are more. Here is her login. _gvis-8. She is caring for her sister. Also on the cure PSP forum there are two, but they are from years ago. I would also tell your neurologist that you are looking for others with PSP, CBD or MSA, He may not be able to give you their names and contact information, but I gave her mine and asked her to give it out. Hope this helps. Christine

[Alfrieda in reply to Christine47]

Hi Cristine, Where do you stay. I HAPPY TO MEET YOU.

[Vissie in reply to Alfrieda]

Hi so nice to hear from people in South Africa. We are in Pretoria. Where are you?

[Alfrieda]

haai. Goed om `n S A VAN TE HOOR, EK BLY IN ESHOWE.

[Vissie]

Ok. Ek is n oud Durbaniet.. Daar skool gegaan. My suster het Psp en het in New Zealand gebly maar omdat alles so duur is daar het sy by my kom bly. Hoe lank terug is psp gediagnoseer? Die siekte het baie verskillende simptome op verskillende mense maar dit is n terrible siekte! Ek sal graag met jou wil gesels so stuur vir jou my cell nommer. 082 454 8097. My naam is Linda. Ek het maande al gesoek na mense met psp in SA maar niemand gekry nie! So lekker om van jou te hoor...

[Alfrieda]

Haai, ek ook bly om met iemand wat PSP het te praat. Ek is `n gebore Suidwester. As ek terug kyk het ek dit al n paar jare.Ek loop moelik en baie stadig, gedink is maar oud word. so 5 jaar gelede baie depressed geraak en angsaanvalle gekry. . Gp het toe vermoed dis Parkinsons.Neuroloog het toetse gedoen en bevestig.Baie geval en seer gekry. verstuk in alles, sukkel met slaap. Ek word toe aan beveel vir DBS operasie,

My oe beweeg nie. Snyspesialis een kyk gegee en hy dink dis PSP.Met MRI BEVESTIG PSP.Dis in Jan. Neuroloog se daar is geen keer nie sal net erger word. gaan hom die 20ste sien . Hy se daar is 5 met PSP wat hy nou behandel.Niemand in my omgewing ken dit nie. My tel foonnr is 0842080138 .

[JackieEM]

Hello to the South Africans on this chat. My Mom has been diagnosed with CBD in August 2016. We struggling to understand it and the support to get. I would really want to make contact and would appreciate some help 083 267 3267 Jackie

[Alfrieda]

HI,i am from SA. I got PSP , don `t know Iwill be from any help. my tel nr 0842080138