Sounds like a nightmare, Jem. Can you turn it back on yourself?
By the way, great to know there is someone out there who also has the Boston device. It is noteworthy how little experience about Vercise there is this side of the Atlantic (I suspect it is because there is not yet a licence for its use in the States, showing how much the marketplace is dominated by the USA.). Plus there is the disadvantage of programmers being relativity unskilled over here.
Can you list (in order of severity, perhaps) your side effects?
I do so hope that your problem gets resolved on Wednesday..
Thank you for your response. I have a remote control device. When my Stimulator has turned off, my husband had to turn it back on using the remote control, as my hands were too weak. The weakness at night is one of the worst symptoms, which I was hoping having the stimulation would give me more mobility, on a regular basis. I had to crawl on the floor one night last week. It is hard knowing if the Stimulator or the medication isn't working properly or it is just PD getting worse.
That sound really bad ,it turns off have you checked battery voltage . Do you take any slow release tablets at nighttime they last about 12hrs also have you spoke to gp about getting OT occupation therapist out to have a look to put some aids in for you,i have a bed lever & its great ! it is all free .Hope the sort it out for you
i take Half Sinemet cr and Entacapone at night. I did stop taking the Entacapone for a few weeks as suggested by the Neurologist, because I was having aŵful head dyskenesias. I had to reinstate the drug because I was getting too weak. I was hoping DBS would make the day more predictable but not at the moment. Unfortunately I can' t use any levers because at night my hands are not strong enough and do not like holding anything but thank you for mentioning it. I have seen an Occupational Therapist but she couldn't help me. I am not looking forward to my check up tomorrow. I am not allowed any meds after 9pm tonight and have to be out of the house at 7.45 in the morning. Luckily my husband and daughter will help.
Something good is happening. This morning, I woke up and was able to walk, albeit unsteadily, across the floor without needing to grab furniture and without medication. Jubilation! My response to DBS seems to be very slow. I will try to reduce my medication and see what happens.
That great news you do keep you dbs on 24hrs are you staying ON ! most of the day ,if you have OFF ! periods say 2pm to 3/4 ish try to up your dbs if no luck .introduce another pd med say 1/1.30pm next day and if you feel a bit dyskinetic say on your right side ,then lower voltage say 3.20v to 3.10v wait half hour if no better reduce again but when tremor starts again go back to voltage where no signs off it.Then next day at same time where you got dyskinetic reduce the meds little ! its a long game ,it took me 14 months to feel great i had to do abit of a trade off ,it was either have complete control of my hands ,arms & head ,but my right leg would drag .or have my walking great but have tremors bad quite bad soi went for the drag as cant handle tremors so tiring.I do hope i haven't sounded like you don't know all this ! keep at it ,its great when you start to get some of your life back ! but always remember not to over do it.best of luck
Is there anyone out there who feel better after having DBS Ive been thinking of pushing for this op but reading about results am beginning to feel its better to carry on with meds. Feeling quite low at present so perhaps its me being negative. I was diagnosed 2008 but feel none of my meds seem to work. Am now just on Premipexole one per day and 1 Mirtazapine at night. Seem to have developed anxiety attacks lately too so am finding it difficult to function going into shops etc.
Anyway thats my moan over, good luck all with the DBS
if i never had dbs i would not be able to wash,dress,feed,writing the list goes on i think Bristol southmead have carried over 10,000 dbs operations ,i know its a risk but when you get as bad as it gets then have dbs then your 90 % back to being normal then i would say yes it works ! theres going to be a short program on itv early next year & its going to be called the miracle with emma willis & thats what it is !
Hi everyone - seven weeks ago I travelled to the National Hospital for Neurology & Neurosurgery in London where they did all of the DBS surgery in one day and switched me on the next day and then gradually increasing the stimulation over the next few days. I know its early days but the results are amazing. i can sit still with no dyskenitic movements and when i get up i can walk! (usually sitting still meant i was off and would have to surf the furniture to get around). I am taking roughly half the medication I was before. For those who are struggling - stick with it and pester the life out of your consultant until they get it right for you. For anyone trying to decide whether or not to have the surgery go for it. My wife was totally opposed to me having it but as of 7 weeks ago is a convert!
HI, ive just seen my consultant and he has offered me dbs, I must say it is not something I fancy much but he feels that my medication isn't helping me much and this is the way to go. What has been your experience of it anyone who's had it done. Martin
Hi Martin I don't think anyone enjoys the thought of surgery of any kind but so far I have no regrets. I wouldn't talk you into it because it has to be your decision but don't discount it because you are afraid of the surgery. Parkinsons is for life- a few hours in an operating theatre can make that life easier. There is no harm in meeting the dbs team you can pull out at any point (up to the point where you are asleep in the theatre! )
