Focused Ultrasound in Switzerland (pallido thalamic tractotomy) WhatsApp group

[Trixiedee]

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.

[saraoutwest]

PM sent

[NewHope1961]

I would like to, thank you

[Farooqji]

i would like to join as well

[camper1]

I would like to join

[Prakash1]

Can you please send me the WhatsApp [phone]

[Parkie-]

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

[healthabc]

I would like to join-

[felixned]

I would like to join. Thank you.

[BUSHPILOTS]

i would like to join. thanks.

[Nivrac77--]

Please add me as well. Thank you for offering.

[ABDESSLAM1]

Add me please. My # what’sup 9145483762

[Lisagreent]

I would like to join this group. Thank you.

[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- 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- in reply to Trixiedee]

Hello Trixiedee

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

Thank you

[Softballman]

Yes. I would. Thanks

[lenamm]

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

[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]

i would like to join

[Fighttolivenow]

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

[Lisagreent]

Very interested. Thank you.

[MihoRuso]

I would like to join, please

[bibsie]

I would like to join.

[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 in reply to Trixiedee]

How can I get on Facebook book, page. Could

[lenamm in reply to Connie18]

There is not a facebook page

[Connie18 in reply to Connie18]

Sorry I meant whatsapp

[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 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 in reply to Trixiedee]

Thanks I will look into further

[Fighttolivenow]

I would like to join also thank you

[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 in reply to mistydog1]

What benefits did you notice from the treatment?

[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]

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

[Connie18]

Could i join the WhatsApp, group

[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 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 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 in reply to Trixiedee]

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

[Connie18]

Please sent me link

[salojimenez]

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

[nv2013]

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

[geddy]

Sign me up TIA

[lenamm]

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

[vwolff]

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

[marcet]

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

[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 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 in reply to Trixiedee]

Ok I’m in the FB Tojo, thank you!

[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 in reply to Miafer]

See above

[Miafer]

My cell phone number [phone]

[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]

Please send if still applicable! Thanks!

[NewHope1961]

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

[Trixiedee in reply to NewHope1961]

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

[NewHope1961]

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

[NewHope1961]

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

[NewHope1961]

okay now I see the Facebook group, thx