Welsh girl

About me Introductions and personal stories
1

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

2

Hi @ponco, :wave:

Great to have you back on the forum! :relaxed:

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:

Best wishes,
Reah
Forum Community Manager

3

Hiya ponco, where did you have dbs? And when? I had mine last Jan and had trouble at first but now okish.

4

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

5

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.

6

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 !!

7

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

8

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

9

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

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P.s. Really struggling mentally, are you? X

11

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

12

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.