Hi my name is Balvinder , administrator of this website. This is the first website I am in the process of creating. I have always been keen to get into the website business after I quit work in 2016, but my brain refused to handle the complexities. Using You-tube I have gotten this far and will continue to populate this site and have set a self imposed completion date of my birthday 15th May.
I was diagnosed in 2011 at the age of 46 and refused to accept the diagnosis but finally caved in at 2014 and started medication. In 2016, I quit my business of repairing laser cutting machinery and hung up my flying boots, as was falling over many times a day. I then changed my treatment to London Queens Square.
First I was instantly prescribed a drug that I had literally begged Coventry to give to me, but they kept declining. It is called Opicapone and immediately helped my balance. It was a great drug to be on for two years and my life quality improved. When I was offered DBS surgery in London I had to think long and hard as the concept of having two holes in my brain was alarming mainly because it was so hard to find information about it. After saying yes and undergoing rigorous testing I was accepted for surgery.
On March 6th I was almost crawling to the toilet my PD was so severe. I was operated on March 7th and on March 8th I was walking at high speed in hospital ward about 4000/daily steps for next 7 days compared to my average of 200 per day.
My speech is struggling as it seems that my brain is rotating at 3,000,000 revs a sec and my mouth muscles didn't get the memo that things have changed. 😎 😎
Looking forward to hear all your stories fellow DBS's
Welcome ODI98, to this site. If you would like to tell us something about yourself and how you are linked with DBS, it would be really great I am a new DBS patient and have the latest rechargeable version.
I am Binders niece and I have seen a huge difference in him mentally and physically. From not wanting many visitors and not getting out much as he struggled to walk, he ran down the steps to greet me! It was honestly amazing to witness. He is full of life and is eager to life it to the full. If someone told me a few years ago that this was possible i wouldnt beleive them! It is truly a miracle.
Hi Balvinder, I was diagnosed 8 yeast ago. I'm 45. I had 4 DBS implants in my head -2 gpi and 2 stn inserted in London Queens Square last year (10 hours surgery). I'm very pleased with my results; without dbs (when I was only on pills) I couldn't cope, my dyskinesia was too bad. Before dbs, I tried apomorphine pump but I was feeling even worse with it than without it. DBS saved my life!
Recently I had a 3rd degree torn calf muscle so my walking is not great now. I'm waiting for physiotherapy.
My DBS is also new, rechargeable,but I don't even know when it's charging itself..
@odii98 firstly a big welcome to you and then a massive thank you for sharing your story with us. Oh my God at 37 must have truly been heartbreaking to be diagnosed. May I ask did you accept it, fight it or just deny it?
For the life of me and can't understand why they don't offer DBS earlier in the treatment program. I'm from Coventry and my local neurologist never even mentioned it as a option! I spoke to possibly the best spoken neurologist called Prof Foltynie and he explained with such clarity all risks involved and possible improvements. Talk about under-promising and massively f@@@ing knocking the ball out of the park 😀 😀 😀 😀 😀
I was taking co-careldopa tablets 6 times a day. When I was ON life was good but OFF time was always lurking around the corner to chop my legs and throw me on the floor! My most life changing super pill was called OPICAPONE; did you ever try that?
My worst drug was apomorphine which you had to stab yourself with the pen to administer it.
I was thinking of putting another topic in this forum about the DBS remote so we can discuss with other users more about it
My remote is from Boston Scientific and it charges through the USB port
Please spread the word about this site as the more STIMULEE's we get the more help we can give.
Hi Sharan you're absolutely right in all you say. For some reason from the age of 46 to 57 I have been hiding away my tremors, my stiffness, slowness, stammering tears and just wanting to disappear. The amount of times I prayed to God asking why me? The suffering has been intolerable. I always knew about DBS but not enough and not knowing where to get my questions answered.
Perhaps odii98 had similar issues?
A massive thank you for your help in getting registration process sorted out. Looking forward to your marketing campaign to get this site noticed.
take care
