Hi I’m Alan recently moved into the area , I’ve had Parkinson’s for some 12 years now , but 2 years ago was fortunate to have DBS which has helped very much how much is difficult to quantify . If anyone would like to know more about the precejure please ask. I had surgery at Bristol Southmead as I was living in Cornwall at the time .I’m 66 now and try and keep positive as well as I can , I drive at the moment and try and do things as independently as possible but I do rely on Anna for those impossible things. Hope to get a grip of this Forum so bear with me Alan
Welcome to the forum!
We have a wonderful community here and I’m sure you’ll hear from some of our members shortly.
Thanks for sharing your experience with DBS, it will undoubtedly be helpful to other members considering having the procedure done and in regard to the forum, please let me know if you have any questions. I’d be happy to help you with anything.
Forum Community Manager
Just thought I’d stop by to say welcome to the forum and do take time to have a look around. Obviously there is a lot of serious stuff but there are also some lighthearted and fun things too. Good to hear you are largely holding your own and nice to know the DBS helped.
Welcome to the forum @Tremardek , I am located in Devon and also have a DBS fitted but mine was done at Addenbrookes, Cambridge. Since moving to Devon my Neurologist is located at RDE Exeter and I go for my DBS checks at Southmead now. Regarding the forum as @Tot has said, take a look round the forum, checking out other new Introduction stories, it is surprising how much you pick up. The thing being on here there is always someone about who can give you friendly advice, we’re all in the same boat and understand where people are coming from !! Take care Alan.
Thanks for getting back to me, I’m sure there will be things to ask along the way , and it’s nice to know the are people like yourself out there to help
Will be in touch no doubt in the near future
Hi Les thanks for coming back to me, always nice to know there is someone out there in a similar position. How are you finding your DBS compared to how you were before.
Thanks for saying hello , it’s nice to know there are people out there in a similar situation. How are you doing with your Parkinson’s,how long have you had it ?
I am holding up quite well thank you. Come December, it will be 12 years since my diagnosis, although like all of us I’ve had it for longer than that. I don’t work now, took up an unexpected opportunity to take voluntary retirement but work was beginning to become untenable anyway. It was the right decision for me. Then in 2016 I was diagnosed with normal pressure hydrocephalus and had a shunt fitted. It is not always easy to tell which is which when things change. I live on my own and manage pretty well on the whole. I privately arranged help for 2 hrs pw some time ago which is very flexible and what I wanted. I don’t drive now so she can take me to local appointments, sometimes she will do jobs for me or finish what I’ve started, sometimes we go out, other times we stay in and chat and that arrangement works very well. Some days are better than others and I have my moments of course, but on the whole I am quite content with my lot, though folk do seem to find that hard to believe. I work hard to stay positive and I believe that to be the element that makes the difference. It is a recurring theme in practically everything I post on the forum so if you want some idea of how this works for me have a look at some of those.
If you want to know anything else just ask.
Hi Alan, As i’ve said else where on the forum, had the Consultant listened to what my wife was telling him I would be singing a very different song. I have TWO Tremors, the Parky and what I had before which is Dystonic but as per know it alls they are, they said it can only be Parky, how wrong my wife proved them. After the operation it was, oh, you have another tremor, hello, you were told but you didn’t listen to the one person who lives with me 24/7 !! The DBS controls the Parky side of things but not so much the other. I have a St Jude DBS fitted which Bristol did not deal with when we moved down here so when I had to have a battery change I had to return to Cambridge. Bristol have now started dealing with St Jude so I don’t have to travel so far !! I too still drive(mostly my wife up the wall !!) and at 68 am still proficient.
@Tot made mention of checking out some of her posts, have a look for one by Imzadi12 - Hello, she has only just come to the forum like your good self so have a read, I have also contributed to this posting. I am a bit junior to Tot at 10 years since diagnosis but have had a tremor since my teens. Have a good weekend.