My jour ny


#1

https://www.facebook.com/pages/Parkinsons-Disease-and-Me-Rusty/1534811320125147?ref=aymt_homepage_panel


#2

 

Hi russ

i 'liked' this page on facebook,i will follow it when this old lap top allows, i found the video at the top of the page hard too watch, but it is the bare reality of this illness, i count myself grateful i haven't reached that stage yet.


#3

hi russ, hope everything is going well with dbs had mine  at old frenchey ,did you have yours done southmead took me about 16 months to get just the perfect settings & right amount meds so dont give up! ALL THE BEST GUS 


#4

Hi, Thanks for that boost... at the ths time I am really having a nightmare although I am positive on my blog. you are right 11 days hardly given it chance...i am extremely dyskenetic in fact worse that pre op. Would you add your thoughts to my blog please?? and also what are your settings/vaults ?


#5

Hi Russ,

So sorry to hear you are not doing so good, I read your blog and watched your video the other day, hang in there. X


#6

hi Russ

I do not have facebook but i can tell you it took eight different settings till found the best one ( thats going to Bristol eight times coming back home feeling great next couple days dsykinesa & tremors come back still working as plumber go back reset )  then stopped work stress level came down focused on getting dbs & meds right ok ! do think it also made difference on one year assessment where you get admitted & take you off all meds also turn of dbs to see how bad you are then re-set ,re-do med intake like a refresh start ! I'm on 3 -125mg sinemet plus / 4-62-5mg sinemet and 1-250mg slow release. Settings dbs 3.80v left- 2.60v right. Lost my best friend ebony black labrador girl had from pup 14.6 yrs . four weeks ago god bless


#7

hi russ

when are you dsykinetic is it just after you took meds if so try lowering meds alittle can take days to get it right! if dsyskinetic all time on just one side lower dbs on that side try 10amps at a time by little ,if on other do the same ! im no dbs doctor so if youve been told not to mess with then follow there advive ! private message me & i will give you my number if needed .


#8

Gus,

Seems like you have had quite a time traveling to Bristol, where is it you live.? 

The dbs certainly seems frightening to me. 

Sorry to hear about Ebony x


#9
weymouth blondie It was the last result for me and Bristol do the hole operation while you're asleep how are you coping

#10

I've been better Gus, but joining this site and reading everyone's stories  has been comforting x

 

Weymouth, that's definitely a long way to go x


#11
£60 a go on the train for me and wife I was still working so had no help with fare .add food best part ton but it was worth it in the end and the dbs team are fantastic

#12

Oh my, that is alot, I know when i used to have to go to hospital in London for appointments, I used to get the mega bus from Bristol to London, which was NEVER £1 as advertised, then you had tube fares and food expenses,  for me +1, its never cheap and was always such a long day, then id have work the following morning cry