Focused Ultrasound in Switzerland (pallid... - Cure Parkinson's

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Focused Ultrasound in Switzerland (pallido thalamic tractotomy) WhatsApp group

Trixiedee profile image
60 Replies

I’ve started a WhatsApp group for people to discuss their experiences of Focused Ultrasound at Sonimodul clinic in Switzerland. Anyone who is serious about undergoing this treatment can join. There are people who aren’t on HealthUnlocked who are in the group which is why I started it. Also not everyone wants to talk on a public forum. So send me a message if you would like a link to the group.

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Trixiedee profile image
Trixiedee
To view profiles and participate in discussions please or .
60 Replies
saraoutwest profile image
saraoutwest

PM sent :-)

NewHope1961 profile image
NewHope1961

I would like to, thank you

Farooqji profile image
Farooqji

i would like to join as well

camper1 profile image
camper1

I would like to join

Prakash1 profile image
Prakash1

Can you please send me the WhatsApp 17324855556

Parkie- profile image
Parkie-

I would like to join. Thank you for starting it.

healthabc profile image
healthabc

I would like to join-

felixned profile image
felixned

I would like to join. Thank you.

BUSHPILOTS profile image
BUSHPILOTS

i would like to join. thanks.

Nivrac77-- profile image
Nivrac77--

Please add me as well. Thank you for offering.

ABDESSLAM1 profile image
ABDESSLAM1

Add me please. My # what’sup 9145483762

Lisagreent profile image
Lisagreent

I would like to join this group. Thank you.

Trixiedee profile image
Trixiedee

I’m sorry I didn’t realise that people can’t see messages written before they joined the group so I’m not sure how it would work without everyone repeating themselves.

Parkie- profile image
Parkie- in reply to Trixiedee

Have you found another way?

If you are going forward with the WhatsApp, can you please tell me how to join the conversation? I have just installed the WhatsApp.

Thank you

Parkie- profile image
Parkie- in reply to Trixiedee

Hello Trixiedee

Have you found another way or are you going forward with the WhatsApp?

Thank you

Softballman profile image
Softballman

Yes. I would. Thanks

lenamm profile image
lenamm

Would it make sense to move it to a facebook group? Willing to help you admin

Trixiedee profile image
Trixiedee in reply to lenamm

I suggested that but someone didn’t have Facebook. I know someone else who wants to participate who isn’t on Facebook.

Vishwa228 profile image
Vishwa228

i would like to join

Fighttolivenow profile image
Fighttolivenow

Hi I'd love to join this group 6782154776. Thank you

Lisagreent profile image
Lisagreent

Very interested. Thank you.

MihoRuso profile image
MihoRuso

I would like to join, please

bibsie profile image
bibsie

I would like to join.

Trixiedee profile image
Trixiedee

When I set up the group I didn’t realise that newer members wouldn’t be able to see messages sent before they joined. So I’m not adding new people as it just looks like nobody is saying anything.

Connie18 profile image
Connie18 in reply to Trixiedee

How can I get on Facebook book, page. Could

lenamm profile image
lenamm in reply to Connie18

There is not a facebook page

Connie18 profile image
Connie18 in reply to Connie18

Sorry I meant whatsapp

Connie18 profile image
Connie18

I don’t really have a tremor but i have tensed muscles (dystonia);can’t write smell,or,taste i have anyxiety and depression. I have no energy and an weak.

Does it,help that

Also I got a lot of issues with my voice caused by,sinemet. Does it help medication side edfects

Trixiedee profile image
Trixiedee in reply to Connie18

Yes it helps with dystonia, fatigue and weakness. Lena reported much less anxiety after FUS. It definitely helps with medication side effects as you can lower your meds quite drastically. One friend who had FUS takes no medication now.

Connie18 profile image
Connie18 in reply to Trixiedee

Thanks I will look into further

Fighttolivenow profile image
Fighttolivenow

I would like to join also thank you

mistydog1 profile image
mistydog1

Hi the hyperlink I have inserted goes into Focused Ultrasound in depth

fusfoundation.org/diseases-...

I'm currently participating in a study for the globus pallidus. I had the treatment back in October. I would suggest watching the video in the study. I went home the same day I had the treatment.

Trixiedee profile image
Trixiedee in reply to mistydog1

What benefits did you notice from the treatment?

mistydog1 profile image
mistydog1 in reply to Trixiedee

So far I am finding a much better quality of on time. So much so I sometimes forget to take my medicine. I have much more stamina and my thoughts don't seem as anxiety ridden as they once felt.

maryalice profile image
maryalice

I would like to join the group. Please tell me how.

Connie18 profile image
Connie18

Could i join the WhatsApp, group

Trixiedee profile image
Trixiedee

When I set up the group I didn’t realise that newer members wouldn’t be able to see posts that were made before they joined. I will set up a new group if I get the ok for the FUS treatment this week.

pdkid profile image
pdkid in reply to Trixiedee

Hi Trixiedee,

Any updates?

I am currently talking with Sonimodul now, have heard about Marc and Lena's experience and am curious about yours. Thanks!

Trixiedee profile image
Trixiedee in reply to pdkid

I was refused treatment as I’m a single parent of twins with no support and he said I’d need time off from single parenting if I had FUS.

pdkid profile image
pdkid in reply to Trixiedee

o no, so sorry to hear trixiedee, hope you are managing ok

Connie18 profile image
Connie18

Please sent me link

salojimenez profile image
salojimenez

I am interested, please add me to the group 980 3553386, god bless you for sharing

nv2013 profile image
nv2013

I would like to join this group. Please let me know how to proceed. Thank you

geddy profile image
geddy

Sign me up TIA

lenamm profile image
lenamm

We have a facebook group now facebook.com/groups/6095308...

vwolff profile image
vwolff

I am intrested in Focussed Ultrasoundsound for parkinson's disease, tremor dominant. Von

marcet profile image
marcet

Hi, i have pd and i would like to join your what’s up group

Tex1 profile image
Tex1

I would like a link to the group. My father was just ok'd for dbs, but have been reading about the FUS in Switzerland. What do you need to send the link?

Trixiedee profile image
Trixiedee in reply to Tex1

The problem with the WhatsApp group is you can’t see messages written before you joined. If you’re on Facebook there is a Facebook group.

Tex1 profile image
Tex1 in reply to Trixiedee

Ok I’m in the FB Tojo, thank you!

Miafer profile image
Miafer

I would like to belong to the WhatsApp group and know more about the treatment I am 43 years old and 5 with the disease

Trixiedee profile image
Trixiedee in reply to Miafer

See above

Miafer profile image
Miafer

My cell phone number +50375425357

Trixiedee profile image
Trixiedee in reply to Miafer

I’m not adding anyone to the WhatsApp group as you can’t see old messages from before you joined. The Facebook group is much more helpful.

tohealth profile image
tohealth

Please send if still applicable! Thanks!

NewHope1961 profile image
NewHope1961

yes I would like to join the WhatsApp group. Please advise, thx

Trixiedee profile image
Trixiedee in reply to NewHope1961

The WhatsApp group isn’t functioning anymore but the Facebook group is going strong.

NewHope1961 profile image
NewHope1961

I am scheduled to take the assessment in 4 weeks and would like to discuss with someone about what to expect, thx

NewHope1961 profile image
NewHope1961

I am scheduled for a pre assessment August 17 can I join the WhatsApp group?>thx

NewHope1961 profile image
NewHope1961

okay now I see the Facebook group, thx

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