I hope that this will be worth it in the end!
Surgery went well gang. I’m a bit delicate though and pathetic. My meds don’t work that well which I can’t explain but might have something to do with the fact that the general anaesthetic has ‘bound’ my insides up a touch. Switch on seems a long way away on 29th September but these are the rules.
Good to see you back. Hope its a major successAnd the meds start working soon
Thanks Rich it’s good to be back!
Best of luck! Thanks for sharing your story. I look forward to following your progress.
You look a bit battered - but also full of good energy and ready for the next step. Fingers crossed that it is all as you hope it to be!
I wish you speedy recovery and back to full fitness ASAP
Couldn’t decide what to say and dyskinesia kicked in so I’m having trouble typing.
Rest up and feel better soon.
Cheers Julie
I've not been on HU for a while so I must have missed it, but why did you choose dbs over fuss?
Grumpy, look for his response to the exact same question on his previous post
£40,000! DBS free on the NHS but also that Dbs allows for control of symptoms from orgaic interaction whereas FUS just presents itself as a finished product.
Looking good Adam 🐱🐰 - Wow....Free on NHS, that is actually quite amazing. 6 times cheaper than the U.S for overall cost. Mind you the U.S. overcharge everything medical.
You look fine to me. Thanks for the feedback so soon.
Thanks Marc
I agree. Looking good. All the best Jeeves and thanks for the update - been wondering how it all went.
All the best to you as well!
Glad you had a successful operation Jeeves. I wish you all the best
Very good to hear, Adam! Please keep us updated.
Art
Thinking of you and your family. What a relief to have this part out of the way. Mary
Wish you speedy recovery and hope that the DBS will produce the required results
Thanks man. 😊
You are very brave,,,was thinking of you ever since. Glad you are back ! 🍄
Thanks for that goodwill gesture. Happy to be back!
Hi jeeves, 😀
What was beautiful will soon be even more .
Welcome back to command!
Gio
Best wishes to you. Looking very well considering. Why have you got plasters on your eyebrows though?
Hello,
We haven't "met" before but I've been following your story, and I find it very inspiring!
Very brave of you to undergo such an operation!
Wishing you a speedy recovery!
Best wishes.
D.
Glad to hear that the surgery went well. You look good Adam. Wishing you a speedy recovery.
Thank you so much for the update! I've been thinking about you and sending up prayers.
You take a great picture Jeeves!
That’s probably something like that has been said to a guy with 2 big scars on top of his head! Thanks Bolt!
Best wishes for a speedy recovery and I hope we will hear the best news from you as soon as possible
Thanks albachiara 👍😊
jeeves
There is usually a period of time after the operation when you feel great and may not need meds. This can be before the stimulator is turned on and I was told it was due to the handling of the brain but I dont know. I don’t think it lasts long so enjoy!
Did you have a general anaesthetic and was your stimulator implanted at the same time?
Hi Hikoi. There certainly hasn’t been any sign of the famous’lesioninh of effect’ yet. In fact I’m struggling more than usual having had a general and coping with the constipation and general weakness that one feels after a major operation. Stiches could nut Tuesday but switch on, 28 September. So long wait eh?
How’s your DBS? I recollect that you were slightly underwhelmed by the results. Has that changed or ate you still operating below par? The programmer is key I understand.
Hi Adam,
Here we have 2 ops, the first about 5 hours with no anaesthetic and the second to put the battery under the skin under general anaesthetic. I found the second op far more debilitating than the first so I feel for you right now.
Afraid I am still underwhelmed by the results and we dont have the luxury of choice re programmers. Its 5 years now and I have largely accepted my situation (but I’m on at the moment!). Jon Stamford (CPT) is writing a book on DBS for PwP. It is needed, I look forward to seeing it later this year not least because I contributed. 😚.
Not meaning to be a downer, just keep your expectations realistic and I hope you are then pleasantly surprised.
Jeeves, wishing you a speedy recovery!
Early days after op. Im sure everything will settle down. Take it easy meds will kick in soon!
Worst bit over!
Glad it’s gone well I wish you a swift recovery , hope it all gos well
Cheers 🍻
I think you're very brave. Speedy recovery and better times ahead 😁😁😁
so pleased to hear it went well! You’re looking great! The only way is onwards and upwards! Look forward to hearing about your journey! We re in Bath at the moment visiting our family so quite close to you! Sending all our best and take great care of yourself! 🤗🤗🤗
I think you look great Jeeves. Onward and upward: we all look forward to your unfolding story of courage and strength.
Your most kind. But as I said above, I think that I’m more desperate than brave 🤕🙏
Great to see you back safely ‘on the other side’ so to speak. I can hardly believe you’ve just been through major surgery - you look so incredibly super well!!!
Let's hope the NHS isn't privatised for future generations needing this.Good luck with 'switch on' Jeeves.
Well I guess that that’s up to us eh?
People who care, politicians and the media...
Thanks Mac. I can only say that it’s in the genes ( but then again so is PD so maybe those genes have got some things right but some things wrong 😂). I attach a picture of mother mine from 1975.
Just had the chance to revisit and seen your reply… is that really your mum? If so that’s a really warm and tender thing to do, to post a pic of your mum at this major event in your life… once again thank you for your reports from the DBS ‘front line’. It won’t be long before I’m there. I realise that you’re struggling with the meds a bit but im sure that’s down to immediate post-op disturbance and will resolve very soon…. I just hope I come through as together as you have!!!
Mac. Tell me your story eh? You’re U.K. based but don’t give much away via your Homepage. You write such nice posts.
My story? Goodness, where to start!!! Well, this is probably going to be far more info than you need, but at least it might keep you occupied in your recovery a bit, so here goes… Yes, I’m English born and brought up on the once very grimy streets of sapphhh-London (Earlfield to be specific) except it’s massively gentrified now. Maybe I am too in the sense that I now live in Galicia in north-western Spain because my wife is Spanish and my two kids (now young adults) have done most of their growing up here. I used to ping back and forth to England for work reasons, but I’m now retired. Even so, I’m now normally back in the UK every 3 months or so, mainly to see family (my mum is 89 and still living alone but worryingly frail), and to occasionally see my neuro, and to catch-up with friends over a beer (or three, absolute max!). My background is in art and design - in terms of formal education, it all started at school and with Saturday morning life classes at Camberwell College of Arts, later sidestepped into a degree in history at York, and ended up with a post grad spell at the Royal College of Art. Then came work which would take ages to unpick and explain. Suffice to say, before diagnosis in 2016 I was doing a lot of projects as an independent curator alongside PT teaching in an arts university. I kept this going for several years after diagnosis, but was finding it increasingly difficult to cope with the demands - curatorial work can be intense at times, lots of make or break pitching ideas moments, writing project briefs and funding applications, and hitting final deadlines, all typically done under pretty stressful conditions, including long-distance travel. If it sounds like I’m complaining, I’m not, because mostly I loved it! But my last big gig was a British Council supported event in the Philippines in March 2020 a week before the lockdowns crashed any sense of ‘normal’. (In fact I almost got stuck in Cebu, but thats a story in itself). And then, during the lockdowns, with time to reflect, realised I just couldn’t carry on pushing it so hard, and so had very little option really but to take early retirement… I did continue to do a couple of small occasional projects for a year or two but even they became difficult. So, more recently, I’ve kept myself busy and off the streets with a bit of voluntary work, doing my own artwork, and just trying to keep my nose out in front of Parkinson’s with lots of exercise, etc. However, I’m now really feeling like there’s been a worrying step change, with Parkinson’s not only catching up with me, but beginning to overtake me! I now have symptoms that I think are similar to those you reported; i.e., muscle rigidity, Bradykinesia and dyskinesia, plus a nasty ankle twisting Dystonia late evenings, which all seem to have come on fairly quickly. Hence the need to look for additional ‘external’ solutions - and the (reluctant, but I now think probably necessary) recourse to DBS in October. So there you go, that’s kinda my story… at least a summary of some of the more recent parts of it… Does that more or less tell you what you might’ve expected?
Sorry! I’m scrolling down and we did engage didn’t we?!
Jeeves: no, we didn’t follow up. I didn’t hear from you after posting ‘my story’, and although I reasoned that you’d probably just missed my post, because you’re in recovery mode I didn’t want to get back to bother you just in case (as stupid as it sounds now) it was something I’d said!!! Anyway, good to hear from you! How are you doing now? I think you’ve managed brilliantly post-op, so just give yourself lots of well-deserved pats on the back. It’s not too long to the 29th . I hope you won’t mind me asking, but I think my “offs” (Dyskinesia’s, Dystonia, muscle pain and rigidity, Bradykinesia) sound similar to yours - did you go for STN or GPi. Also, I know Bristol have been developing microsystem control and power units that fit into the skull. Is that what you’ve had? I’m afraid I’m going to get the wired-up approach. Neuros tell me it won’t interfere with, for example, going to gym and even doing weights, but the Bristol system sounds so sensibly neat. Forgive me if you’ve already posted re these subjects on older threads…
Please check PM,s. I’m still trying to recover from the trauma.
Jeeves: I’m so sorry to hear your suffering, Bad “offs” are just so f***ing awful. But as you know, they DO pass sooner rather than later. So hang on in there mate… Remember you have a lot of good people rooting for you and please don’t worry or put yourself out on my behalf. All this shit is going to get better soon.
hey - you did it - speedy recovery x
Thanks Annie. When are you going to consider having it done?!
Good luck, fingers crossed all goes well and 29th's not that far away, time to heal.
Good to see you. Took courage and being desperate as you say gave you the push to move forward. Eat well, get rest, be kind to yourself. We all look forward to hearing more as time goes on. Best to you.
Thanks a lot Linda. All the best to you and your loved ones 😀
Thank you, Jeeves. My HWP just got the device SpeechVive to help him with his soft voice. Takes lots of practice.
I'll tell him about your story - will give him incentive to practice his voice.
Hugs.
Sorry to be negative I think you have put me off dbs
Glad to see you looking so good and wishing you a comfortable wait till switch-on day!
That’s exactly what happened to me. I felt worse before I felt better. But well worth it. Mornings had previously required a walker but is now collecting dust in the garage. It’s been almost 4 years
Hi Jebbie. I’m actually surprised at how poorly my meds are working since I came out. I’m struggling to stay on and well, what can I say? It’s really *issing me off actually.
thanks for the update. Glad the worst is over! Looking forward to your next update. All the best!
Thanns Missy. I will do 😀
Hi hope you dont mind me asking but what were your PD problems when your consultant said DBS is the next option? Just curious thanks Geoff
Congrats! Hope you recover quickly and the switch on gives great results!
Hi Palm Springs. Long time no hear. Hoping this finds you doing well?
mostly the lack of reliability and instability of the meds My main symptoms are bradykinesia, stiffness and full body dystonia. I got so fed up with ‘will they work? Won’t they?’ That the choice of DBS was a no brainer. I was about ready to throw myself off the nearest bridge if I’m being honest Geoff.
I applaud you for your courage and strength. I am new to this board but find the support and camaraderie very inspiring. I am presently looking at DBS for the future so thanks for the post. I look forward to your complete recovery ! Best Randall
Thanks Randall
Cheers Adam! You are an inspiration to all of us. You were desperate but brave and determined! And that’s what will heal you faster. Two of my RSBoxing buddies had DBS within the last 6 months and they said it changed their lives. Remember…. you’ll get there if you keep fighting!! 🥊🥊
One more thing….can you imagine, being female and needing your head shaved?? 🧑🦲 Debbie
I hope it was worth it Debs. I think that one thing that vexes me is that by accepting DBS quality of life is restored but you’ve chosen to enter a lower stage of PD? You know, your symptoms might improve but in actuality, you’re another stage away from health and self regulation? Kind of bugs me that im going to be relying on a machine to keep this human machine running correctly.
Adam,
Are you sure you had DBS and not a facelift? 
You look great after such an invasive surgery. I wish you speedy recovery and may the results be even better than you expect/hope for. Let us travel with you your post-op journey!
Despe, you’re such a charmer aren’t you? Thanks for that. It’s nice to hear ‘nice’ things especially when you’re recovering from such a major operation. 🤕😊🧠❤️
congratulations! You made it through. Wishing you a solid recovery and the improvement you seek.
Hi Jeeves Im glad your ok and the surgery went well. I hope the switch on makes a great difference for you.
When are you going go it Ginge?
Im still being assessed for suitability. Final phycologist appointment at end of September. I think it'll be some time off yet. Assuming I pass the assessments that is 🤔. Don't think I did well in the memory tests. 🙄
Did they tell you this or did you just sense it?
I just wasn't in the right frame of mind and the stess of it made my meds fail half way in. I don't think it went well. I'll find out in the next appointment with the actual psychologist. 🤞How are you doing a few days post operation?
I just wasn't in the right frame of mind and the stess of it made my meds fail half way in. I don't think it went well. I'll find out in the next appointment with the actual psychologist. 🤞How are you doing a few days post operation?
I think I’m just shocked (and stunned 😳) at Jo badly off I am without meds. I don’t remember being this bad before ( or did I? Sometimes you wonder if you twist things to suit your argument). Otherwise healing well .
My very good wishes to you Jeeves. It is tricky always any post op phase. Rest, sleep, if you can meditate, do so. Above all, trust. It has gone well and there will be many more improvements to experience. 😇
speedy recovery and get ready to JAM, brother!
Old friend. Great to hear fro you. Hopefully you’re still a way away from needing this yourself. I think that all that intermittent fasting did you lots of good. Hang tough Bass.
So good to hear the surgery went well; I hope it dramatically improves your symptoms. Please keep us posted.
BTW, if you mean that the anesthesia has caused constipation, I finally learned that Magnesium Citrate and Vit C work wonders!! I cannot overstate this; it really has been a game changer for me. I wish I knew this years ago. Mix powdered 400-800 mg Mag Citrate & 2000 mg Vit C in water. You can start with a couple times per day to get things back on track.
Now I take 400 mg MC & ~ 1500 mg Vit C daily (at night) just to keep things running smoothly.
Thanks very much 😀
Congrats! I can't wait to hear how your DBS goes once turned on and, more importantly, in the years to come. May it bring you freedom and happiness!
You must be one of the younger patients that the doctor has seen (you look about 39-40 ish). Perhaps this will increase your chances of adaptability as your programme settings are modifed in the years to come.
Thanks Discogs. Sorry to be late in thanking you. Just an oversight. 👍
Adam You look fine , 20 years from now you will look at that picture and wish you still looked that good. Relax now, think about something else, watch a football game, open the windows or go outside if you can. Look after the small things. Get lots of sleep and rest , drink lots of liquids and eat good food in small portions , good music, laughter and time with your family and try to stop worrying.
You are on the road to recovery, small steps, do not over exert or over test your abilities. It is a long road and it will take some time , patience , there may be small disappointments , maybe some ruff patches or up - hill parts but you will get through it .
You are not alone, be happy
Jim
Thanks for sharing. Speedy recovery from the surgery. Hopefully you will see the benefits soon.
I suppose I was
Just being a wimp thing is I feel like I'm getting worse so I have no choice you can't expect people to help you if you won't help yourself
Congratulations sir, you look great after a tough surgery. Sending positive vibes and wishing you success with this.
Looking forward to all the good you will be sharing!!
Thanks friend 😀
Well done, Jeeves. Thank you for sharing. Hope ull get well soon and itl all work for you.
I wish that you have a successful recovery. So far so good! Thanks for sharing your journey Jeeves. You’re inspirational to me.
Many prayers for a speedy recovery! You are very brave, anesthesia does mess up Parkinsons longer than a typical patient.
thanks for posting, I too found my 'off' times much worse. I've just realised we have both had our ops at Bristol. You're a bit ahead of me, my op was 16.8.
Far out. Ms Ashida too?
should that have said I had?
How do you feel?
pretty good this morning thanks. One side of my skull is a bit numb but hey ho! 🤔.hopefully switch on will be a memorable day (29th September).
Thinking of and praying for you Jeeves19 and for a speedy recovery with beautiful results. You've got this!
14 THINGS I HAVE LEARNT ON MY JOURNEY
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DHIVY
