Hello everyone Im Ponco a welsh speaking 49 year old from north wales .,I’ve had pd for over 12 years + years of going from one to the next about 4 in reality telling me I was making symptoms up and there was nothing wrong with me . I’ve got a lovely husband and 2 teenage daughters , and enjoy every minute of my life . I’ve had D B S and after a lot of trouble with it it is working great , I’m looking forward to read all the stories and looking at new ideas xxxxx
Great to have you back on the forum!
Happy to hear that you’re doing well and you’ve responded well to the DBS treatment. Here’s a few threads that will help get you back into the throw of things and reacquaint yourself with some old friends. Here you go:
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Hiya ponco, where did you have dbs? And when? I had mine last Jan and had trouble at first but now okish.
Hi , thankyou for answering my message. Iv’e been through a lot with dbs . It’s working great now but I had a long haul to get it right. I originally had the op 4 years ago in Walton Liverpool but 3 months later I was back in not feeling very well and the back of my ear was losing a liquid. Not having taken anything with me I went to the shops to buy night things .
The wire to the battery had got infected and if it had climed any further to the brain I would be dead . They took everything out and put me on a drip and was there for 6 weeks to get it sorted.
In 6 months time I had the op again awake like last time , no problem . Husband came to get me home and in the car a few miles down the road I had a seizure . He phoned the ambulance and I was sent back to the hospital where I had a lot of seizures again. Eventually I was sent home . I was’nt allowed to drive for a year . The doctors told me I had 5% chance of having an infection and 5% of having a seizure and I had both !! They have been programing me slowly and by now I feel very well . I still take medication but a lot less. Im glad I had it done , how do you mannage and does it work for you xxxx
Wow!! You really have had a tough time! Mine was no where as bad as yours, just seemed really down, but they tweaked it and was feeling better, but down again :frowning
Guess it’s just part of this nasty disease.
Have you had youre full power with being tuned in . I went and stayed in hospital for a weekend it made a lot of difference . I’m a skinny person and sometimes the wire sticks out a lot , it causes me a horrible feeling I creep myself out but it’s better the wire than no help from a devise that has changed my life xx Where do you live in this planet , how long have you had pd xx are you on any depression tablets , Im on citralopam but these days if I’ve got nothing to do or nowhere to go I’ll stay in my bed until lunch time sleeping all morning !!
I am currently 2.3 volts on left side and 2.6 on right and have a rechargeable battery. I know what you mean about wires, sometimes mine are really prominent. I live in Brighton, had PD for 14 years (55 now), had DBS last year at Kings Hospital, London. OMG yes, I have been on antidepressants forever, was on Citalopram, now on Vortextine. I get up early, around 6am as have trouble sleeping and back problems. Was medically retired last year and finding it tough being at home. What about you? Xx
I’l be 50 this July.I used to get to bed about 1 in the morning and get up at about 5 or 6 and be very hyper all day now I’m totally different , I know its late but have been watching who dares S A S program . Ive got a bad back right on the base of back . I take pain killers and try and keep active dancing around the house and doing yoga . Does vortextine work for you or do they make you sonked.Ive had parkinsons for 12 years but Ihad it a few years longer but they didnt know what was wrong with me xxxx
Going to bed now xxxx
Vortextine ok with me. What painkilkers are you on for back? I get depressed and wish I could dance around the house!! Good for you. Off for physio on back now xx
P.s. Really struggling mentally, are you? X
Zapain I take for back pain seems to keep it down . Mentally Im not too bad , wont get out of bed in the morning only if Ive got something to do , It won’t beat you you have to be strong and don’t let it rule you this parkinson thing we won’t die from it and research is getting closer to a cure or keep it at bay getting any worse . Some days you have to give in to it but next day I’m off again . What have you in family around you xxxxx
No family, my Mum died in October (we were so close), my Dad 7 years a go and my sister 10 years ago. Zapain, I habe not heard of that.