Thank-you Mike I have promised other friends on this site I will keep them updated. So if you want to follow my progress feel free to do so.
With the kind thoughts you have shown me I now consider you a friend that is not a title I give away lightly having PD has really shown me whom my real friends are.
But that is fine as I don't want negative people around me and especially those whom come at me with an attitude because them I do not look ill.
I have a standard I stick to and will not let that slip in anyway shape or form as that is one of the tools I use to fight this B**** every day.
Hope you had a great new year night out, My best wishes to you and your good lady and family.
Hello BB, I noticed that you have a date for your DBS in March, I'd just like to send my best wishes and hope everything goes well for you, you have put up a good fight and deserve it, good on ya!
Yeah all the best bb ,how time flys 5yrs in March my dbs fitted not looking forward to my examination stay in hospital for couple days take you all of meds turn off dbs around 8pm till 8am then reset your dbs and meds to get the best out of it there are two settings on dbs a & b i always make sure i have my old settings in b as if i don't get on with new one's a i can switch back to b old settings as symptoms do change when your back home
Happy new year BB AV not spoke to you in a long long time how are you young lady ? Saw a clip of you doing some tests and heard no more of you since . Hope your doing alright lassie
Good luck Betty Blue. I hope your DBS works for you. I dread to think what I would be without it, but I'm still having problems.
I had my DBS op in August 2015 and when I came round from the anaesthetic, my left arm and hand were paralysed. I gradually got the feeling back in my arm over the next month, and with physiotherapy, I was OK. Over the last few months my left hand has gradually got worse. First tingling,then numbness, then pain. Now my left hand is excruciatingly painful. I intend going back to the neurologist, but I just wondered if anyone else has had this problem?
Hi Ian and lilac.
Ian i have been struggling for a while now and the time of year does not help me as my distonia is badly effected by the cold. My marriage has been seriously put under strain by my condition so i try now to minimise my time on the forum here. We seem to be ok at the moment i think Colin has finally got to grips with the way i handel my condition as i very nearly left him that seemed to make him wake up and smell the coffee so to speak.
Lilac thankyou for sharing this with me personally i would advised you seek an appointment with your neurologist asap i have done extensive research within DBS and have never heard off the difficulties you are dealing with. Let me know how you get on xx
Thankyou both BB. xx
Hi lilac sorry never had none of the problems you said did have really bad pain in back of neck for a year think it was wires in neck done some exercises and all is well
Oh well just had confirmation my 5yr assessment ,not likely come of all meds & dbs from 8pm till 8 am will let you know how it goes apt 13 th march 2017 .GUS
Thanks Gaz
Sorry to hear about your marriage going to pot.
I do think me and Colin will be ok as i laid it on line when i was planning to leave him last year.
I said just remembered one thing i have already left 2 husbands and i am not adverse to leaving number 3 and i always bounce back.
BB xx
Hi bettyblue, I am new to the forum and have been reading through the posts. I am particularly interested in yours as I too am in the initial stages for DBS. I have seen Dr Limousin, had a brain scan and will shortly be going for a two day assessment. Can you add any detail as to what I can expect on these two days, I have basic info, would be nice to hear from personal experience. And the best of luck to you for March 7th.
There were three distinct stages. First was an assessment by a neurologist on the DBS team. If the neurologist thinks you would be a suitable candidate, then you are booked on a 2 day assessment where you meet various members of the team and are asked to perform a number of tasks without medication, and then repeat these tasks with medication. Tasks include the usual finger tapping and nose touching, walking, talking, memory and psychometric tests.
Thirdly, you meet the entire DBS team, and they must have a consensus of opinion that you are suitable for surgery. It was at this stage that I was asked if I would like the operation.
Brain MRI must be normal, you mustn't suffer with depression. You must respond to Parkinson's meds. You must be unable to tolerate the meds, or the meds should be reaching the limits of efficacy.
if anything else comes to mind, I'll add to this post!
from my initial referral to the DBS team to the day of the operation was just over 12 months (we did accept a couple of appointments at short notice which could have saved me a couple of months of waiting).
Hi Ian, I am very grateful for your quick reply which tallies with my experience so far. I have had the two day assessment which is very intense as you know, and am now awaiting an appointment with the DBS team to find out whether I qualify for the operation. I really hope so. I will update the forum when I hear more.
