Hi folks. Got the invitation from Bristol for the pre-DBS assessment at the end of July. I’m very apprehensive as I know that a key feature is the withdrawal of CL for an extended period. The thought of this freaks me out. I’m not tremor based, so going without meds causes massive rigidity, cramping and virtual spasticity. I believe that one has to go from 6pm to 11am the next day without the meds. I just can’t imagine how I’m going to get through these hours with such pain and twisting. Any thoughts or observations from those who’ve ‘been there’ are very welcome 🙏🏽.
Additionally, I’m aware that Bristol has pioneered the battery being placed inside the patient’s head (sounds weird eh?). If anybody has any news on the success of this new process, again I’d welcome your contribution.
cheers gang and all the best.
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jeeves19
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Good news that your DBS appointment has come around. I am sure the clinic could confirm for you the arrangements regarding medication cessation. Hopefully someone can suggest something to alleviate the pain and disability, but I can't offer anything there, I'm afraid.
However, I think if I were in your shoes, I'd want to have tried Peter Tass' gloves before brain surgery. Whilst the full program for long term desynchronisation is 4 months, most Stanford patients seem to get an acute effect , which only lasts a half day or so, on the first treatment.
I have a similar dilemma. I've just bubbled to the top of the Charco CUE1 list. If I had nothing else, I'd be keen to try it. But I would like to try the gloves first. I'll probably take up my device and leave it boxed for now - it's been a 15 month wait!
Of course, you can't get the real glove yet. Very frustrating if you have PD. Which is why there are so many DIY projects out there. I think I am likely to have mine operational and start 4 hours a day after the weekend (if that comment hasn't jinxed the arrival of the remaining items I need). But, as I said, in your shoes, I would probably want to have a go at a DIY glove. Before brain surgery.
Of course, Dr Tass is also doing a lot of research on the Coordinated Reset vibration patterns for DBS too, so it may be you can benefit from that , if the gloves don't deliver, or you go ahead with the brain surgery anyway
Richard. I have to admit to being more impressed with the gloves than i originally thought I’d be. I d heard of them but suspected that they were yet another strategy that sat on the peripherals and wouldn’t really get to the meat of the issue. But the YouTube clips are very interesting. Trust you to put the cat amongst the pigeons! 😂. Btw, don’t hold your breath on the CUE. I thought it was an utter waste of money and sent it back for the refund. But then I do know a few who thought it helped. Sadly not for me. I suppose DBS AND being a glove wearer would turn me into some Marvel comic character to be reckoned with maybe? 😊😂🤔
Funnily enough, I feel I have a very sexy Professor X vibe (mutant hunting) in my Coronet. Cue 1 is more Iron Man. Gloves a bit Thanos...I think I watch too many super hero films.
Rich. Indulge me: watched all the clips and look s impressive. BUT the thing that annoys me about these wonder cures is that they never show you the people who it DIDN’T benefit. I wish that they were more up front about this. So why don’t CUE show people interviewed who got no benefit? Why did Constantini not have people who B1 had no affect on? Why did the Coconut oil crew never show the guts that it made no difference to? D’you know what I mean? I just wish they were more honest in their presentation of things.
Did you talk to my Dad? That was his refrain. "Never believe anything that never fails". It's pretty certain some of the responses are only modest. The news video claims Stanford claim everyone has benefited at least a bit (the start of damning with faint praise). Of course, it's all been open label so far, so could easily be a placebo effect. For sure - we can both count the disappearing miracles. I am particularly aware of Colin Potter, one of the first "alternatives" I found. And his opening comment was about not doing well at his daughters wedding. It haunted me a bit from that moment, and was very much in mind last week. Fortunately it didn't matter - I had no such problems.
I agree there's a lot of hype. Tass and Stanford have to some extent been caught up in the hype of others (the glove threads on this forum being examples) but they seem to have basked in it.
At this stage, I'm cautiously optimistic, and keen to give it a proper serious trial. Hopefully starting Sunday. But with a little pre-trial emergency relief this evening.
The youtube clips I think are a little selective in their presentation. Kanwar Bhutani has clearly had a huge benefit. The other 2 in the news clip, and the supplementary materials on the 7 person trial are good, but the "bad" clips are off-meds and the "good " clips on meds. And there are hints that not all respond as well as KB.
That said, my own very confused pre-evaluation suggests I am very keen to get going, and will be very disappointed if it bombs. I have resisted using the gloves since the wedding, pending a re-build for Mk3 - but I have a neck ache, arm aches and leg numbness probably nothing like you describe, but have driven me to the point where I'm going to rig-up a 2 hour session tonight.
Am very very keen to see how you get on matey. Please let me know for better or worse. There’s no body would want to wear a pair of gloves in preference to having brain surgery more than i ! Thanks for your sensible contributions and generosity with your posts Richard.
This was a long post about me using the gloves. I have moved it to my own Gloves thread, because it was starting to trample on Adams thread which was about his impending DBS surgery and not the vCR gloves
Firstly I could never afford it and secondly I somehow thought it had been tarnished after that post from a Canadian lady about how much worse she was following the procedure and Sonimoduls refusal to acknowledge her situation? I sensed a real shift in perceptions on HU following this post and it seems to have carried on. I used to read stuff about them all the time but lately, it rarely seems an item. And I think it’s unregulated which concerns me.
If I had the money Marc, I think that I probably would go if I’m being honest. So that’s the main thing, but I’d proceed with much caution whereas a year or two ago, I’d have had it so one without reservation.
You are right to be concerned. It is brain surgery after all and like BDS, no procedure is free of risk.
The lady in question had a low density skull bone score as did the person in the US who had a FUS treatment at Stanford, who is the other person known to us who had a bad outcome. Perhaps they shouldn't have done the procedure on them.
What about FUS pallidotomy? Different from PTT. Do you know if it is done in the UK and covered by health care? ( Apparently not.)
had it done at Oxford , about 6 months ago , its true , they see how much the CL impacts on your symptoms , they are looking for a improvement when the then give you a dose , they will test your ability offf then o CL .. hint , you need to show a marked improvement .. ON CL , for me being tremorbased its a great help BUT NOT perfect
All the best Jeeves with your pre assessment. Can’t offer any advice re medication, but there must be many on here who have gone through the same thing.
About 3 years aho I made this assessment and I can say it was a little bit painful it wasn’t so more painful because I’m doing apomorphine infusion 24 hours and only had to take off 6 am. I pass all steps to do DBS. When i h a d de appointment with the doctor to know the news if they make me cirurgy he said how I doing well with apomorphine infusion he don’t advice DBS, but he said it’s my decision if I wanted to do DBS they do it. This is in 2019 we a as re in 2023 and still doing well with apomorphine infusion
It sucks, as the apomorphine pump, not available in the US yet. I have been taking the sublingual form, and it really helps me. Get this, my MD just told me they are taking the sublingual off the market as it is not selling well. OMG!! s= So until it's FDA approved I'd imagine I will be doing the "shot" in a few months. AAARRRGGG!
Hi Jeeves19, I belong to a small parkinson's group, where we meet once a month. A man in his early sixties decided to have the procedure done. Everything went well.I talked to him and his wife, how he was doing few months after the procedure. What she said was that they should have done more research on the cognitive aspect of it. He gained some in his movement and lost some in his cognitive abilities. It was noticeable.
I suppose I’m just wondering if the more experienced the surgeon or centre, the less chance there is of cognitive decline as a result of the operation.
If you don’t mind, I’d be interested to know why you think this is the moment to go for DBS? Have you reached the end of the road with meditation in some way, cannot tolerate the drugs etc etc? Best of luck! ( Bristol would be my local centre so keen to follow your journey).
I had DBS in January 23. I worked myself up into a tizzy worrying about going without meds for assessment. So I decided to be prepared. I borrowed a wheelchair, wore depends, family members were prepared to keep me company the night of c/l fast and made sure my appointment was the first one. You can do this, it was not as awful as I imagined. A lady shared that her HWP stayed overnight at hotel who said they had a wheelchair but didn’t. So she put him ion the luggage rack in order to get him to car. You can do this. Good luck. I am curious about putting the battery in your head
just the unpredictability of the meds really Ginge. Mostly they work, sometimes they don’t. Food seems to seriously get in the way of the efficacy of the drugs. This is when I get really fed up; you know, you wait 30 and so you can have your breakfast, then an hour later I’m off. When I take Levadopa it struggles to get through the food and it’s not just protein. Also, the stiffness and pain don’t seem as willing to shift these days despite the meds?
and another thing: I hate the fact that I’m insecure about going into town or a city unless I’m ‘accompanied’. I’m beginning to feel like my wife’s son at times (when we get home she brings me a nice glass of milk and some cookie)😂. But if I go OFF these days it’s a big OFF, as and I can be quite vulnerable in public places when I’m badly off. So I hope DBS will give me some restoration of independence .
Thanks, same with me. The meds are unpredictable. My neurologist has now referred me. I told her that you were going for your assessment at Bristol, she said that they are a really good team and she used to work with them. I mentioned your concerns about being off medication for the assessment. Its basically no meds overnight. She said at one time you'd need to have no meds for 2 days as this would show what you would be like unmedicated.
They look at you when you arrive, then give you 200mg sinemet and after an hour assess you again to see if you improve.
Good luck. Keep us informed of progress, im about a year behind you i guess.
it’s not like that here in the U.K. Debbie. Private medicine does exist but is somewhat on the periphery. And the private wing has a bad reputation when it comes to ‘serious’ matters: they haven’t got the backup. So Brits aren’t averse to have their in grown toenails done there but for the heavy stuff, it’s the NHS. And with this system you ‘get in line’ as you guys would say.
My HWP had DBS in 2005 at Bristol. Was wonderful for tremor but affected his walking. His 'Ons" were good but almost 18 years down the line he is not getting much out of his drugs some days. He has had PD 30 years though. He is still glad he had it though but things have gone down ill this past year. We now go to Sheffield for his appointments which is much nearer to where we live in West Yorkshire. At our last appointment a man who had recently had DBS walked out of the appointment room and you wouldn't have known he had PD he looked so well.
your experience is like mine with food. I just need to look at a sandwich and it’s enough to throw my Levodopa off. It’s like a further kick in the teeth onto of the condition. I attended a superb picnic recently and had to watch everyone tuck in to the amazing food whilst I had to wait for my dose to kick in before a dared to eat anything.
I’m hoping that the development of Subcutaneous Levodopa could be the answer. We’ll see
Agreed. I think this one could be very helpful although if my experiences with new products are generally that one has to wait far too long to benefit from them. They’ll probably allow us to actually use it by 2030? 🤔😤😂
2 good points to which I would like to respond, but I fear we are thread-crapping poor Adam. I realise that I am the primary offender, but could you move these responses to my glove thread, and we can carry on the discussion there?
My husband who is 74, got DBS surgery in New York CIty in 2019. His C/L intake was high and wasn’t working well any more. After successful DBS surgery, he no longer takes C/L, which is rare. The medicine gave him leg cramps. He is doing so well. My husband no longer has on and off times. In my opinion, it saved his life. I am wishing you well on your upcoming assessment.
Hi Crescendo, WOW - that is absolutely fantastic 🥰 You both must have been over the moon to be able to drop the C/L. That does seem rare. Unfortunately my husbands lower intake of meds didn't last and he is back up to a higher dose of 2000mg of 50/200 CR Sinemet now. Things are ok though for now. So happy for your husband 😇
Hi Adam, I think that's great that your Appt has come around. Gosh, I was just reading about the tiny DBS implant where they put the battery also into the top of the skull. That is pretty amazing. My husband who is 60 also has had DBS since 2012, he was 38 yrs old when diagnosed, so Young Onset... His meds were starting to fail hence doing the DBS which was both sides and it was amazing. He would do it all over again. Yes he was awake at parts through the procedure to make sure the electrodes were in the right place, but there was zero pain. As for meds. This is pretty much exactly how his surgery went when awake also.
""The surgery can be performed either awake or asleep. For awake placement, the patient must not take their Parkinson’s medication the night before and morning of surgery. A frame is placed on the patient's head while the patient is sedated. A CT is obtained to get coordinates for every point in the brain. The patient is brought to the OR and a hole the size of a nickel is drilled. A microelectrode is passed, and we determine that we are in the right place by waking the patient up and listening to the neurons at rest and their reactions to the patient moving. Once we are satisfied with the recordings, the DBS electrode is placed. Small amounts of electricity are sent through the electrode to make sure we are in the right place. The process is then repeated on the other side. Once we are satisfied with the electrode placement, the patient is sedated, the scalp is closed, and the frame is removed. The patient goes to the ICU overnight for observation. Most patients go home the day after surgery. At our center, the frame is generally placed at 7 AM. We are usually making incision by 9:30 and are done by 2 PM.""
He was back on meds in the afternoon from what I can remember when I went and saw him. He overnighted one night. He also has near zero tremor. His worst issues were the dyskinesia from not tolerating higher taking of Sinemet at the time. His gait is way worse now though which DBS doesn't help and also cognitive is taking a hit which is a shame, as we didn't realise that could be such an issue. He had his implant in the GPI area which was better for cognitive apparently.
Thats all I can tell you, but pm me if you would like to know further on his experience. It's hard question to answer as it's so personal. We wish you all the best whatever you decide.
Hi Bunny. Thanks for contributing so affably and generously. It’s a huge step to make and of course one is always wonderingly if you’re going to be one of the ones whose life changes for the better and not worse. I AM troubled by the potential for cognitive hits but I’m ‘hoping’ that they’ve leaned some lessons in the 10 years since hubby had his. Fingers crossed anyway.
Hi Adam, His neurologist is in the U.S. and his DBS was done in the U.S. yes but we are in Europe at present for a few years.... It is a huge step for sure but for him the benefits still outweigh the negatives by quite some. The cognitive worried us then as it does now but all we could do was take their advice to have GPI target, which we did. Short term memory has certainly taken a hit just this last year, and a little confusion with things like navigating etc. Overall pretty lucky actually considering he has had it 25 years. He still cycles, gymnasium, drives, does most things himself. The falls really are the worst side effect that has become worse since DBS by quite some... around 10 per day.. nothing seems to help. We have just started some different physio though recently to build up core strength since falls for him are from postural instability we think. It's definitely all an unknown going forward and one can only do just that - 'fingers, toes, eyes and ears crossed' LOL.. I wish you ALL the best...... these online forums, like another I belong are a hive of information - incredible ! JB
Thanks for that. 10 falls a day is very bad luck indeed. Hard to know what to do as you say, but maybe this is what this vile illness looks like after such a long time? I found this which I hope is of some benefit? It’s always good to hear a range of voices and perspectives. There WAS a profile of some guy who was astonishing. He obviously foresaw how important balance was and went to town in prioritising it. He could balance while each hand and foot were positioned on a basketball. Unfortunately, this profile seems to have been lost under the hundreds of well meaning but somewhat too common PD ‘work out’ vids that dominate YouTube.
Thanks Adam, I will definitely look it up..... It's such an unfortunate side effect, that he has, as he has always been very active, biking, motorbiking, running and even the Neuro's and PD organisation where he does some therapies are perplexed as to why he has so many falls..... Yes absolutely postural instability and he is tall at 192cm, but in reality it's progression also. We are trying to get him to regain the weighting of his body over his feet instead of the 'advanced lean back' that comes with having PD for a long time. What is bizarre is when we are walking in the street normally and he suddenly starts to fall, I can feel it in his hand and I can put one finger on his chest from the front standing and it stops the fall. It must break the brain fixation on falling... or something?? Appreciate your reply very much. As Despe says below, the questions to your Neuro are a good one, but in the end each person is unique, the Neuro's really don't know 100% how you will be until it's in place... that's what we have found. GPI over STN was recommended for less cognitive issues, but now, we feel STN would possibly have been better for less med taking. Wishing you all the best whatever your decision.... you're open minded that is the best way to be.
Wish you the best should you decide to have it. However, you must ask yourself and the doctors, "Would DBS relieve my massive rigidity, cramping and virtual spasticity?" Benefits vs side effects?
Each PwP is unique and what works for one might not work for the next.
I’m waiting to see a movement disorder specialist in October and I definitely think the question of DBS will come up.
In case it hasn’t been recommended I found this video really helpful in weighing up the different “advanced therapies “. Might help you with a few questions. Hope the appointment goes well.
Thanks for that Nick, Keep in touch re. your decision eh? Always good to have more than one scout riding ahead to assess and analyse the enemies strengths and weaknesses.
I will try not to bore you with a lot of my opinions, I will give you a little info about my experience with DBS surgery which I had 14 months ago. My quality of life had decreased as well as my functional movement (walking, turning over in bed) to the point where DBS was an easy choice. Or I could just climb in a hole and just quit living, I have to remind myself often DBS is not a cure. It can restore a higher quality of function back, which it has for me.
I also have to remind myself often that the Parkinson's disease does not stop progressing getting worse, no matter what we do. There are times I have asked myself has it been worth it, Then I turn off my DBS controller for about 5 minutes, then it is very obvious to me yes it was. My experience, the surgery was easy, the 3 months post-surgery was Very difficult (the period of time trying to figure the out the right settings for the DBS as well as the right meds. dosages, this was difficult.
If you want some temporary relief/benefits then I would recommend DBS, to get more function back and lesson some of the Parkinson's affects (tremor, rigidity, etc.) then go for it. When I say temporary benefit, 3-5 years is what I expect, based on what I am experiencing and from a couple of friends that had DBS surgery a few years before me, what they are experiencing.
If you are content living a very sedentary life, then I would not recommend DBS surgery.
Thanks for that. Very illuminating. There doesn’t appear to be any way out of this jungle does there? I would expect more than 3-5 years. Of course it depends on the individual but I know quite a few who have had considerable relief after 10 years. When did you have the DBS?
Hi, I've had PD going on my 11th year. My condition is very slow movement before meds and Dyskinesia. I didn't realize how bad the dyskinesia was until I saw a video of me talking at my girlfriends birthday party. I was shocked! A couple of months later I saw my doctor and she said i should consider DBS and this is the right time. As most of us do, I researched as much information and a couple of friends have had it done and have had good results. It is brain surgery and I'd be lying if I said I'm not a bit scared, but the positives out way the negatives.
I have 8 appointments coming up June-July and then I'll know when the surgery will happen.
Like all of us I want to feel better and I wish you the best!
keep in touch. We can share our experiences if it’s at all helpful. You’re the guy who exercises before meds! I wish I knew how you manage to do this? Amazing. Good luck with your planned procedure.
I do exercise before my morning med dose but it's not at the same intensity as when meds are working. I've completed 6 out of 8 appointments and so far it's looking like I'm a good candidate for DBS. Your posting has provided a lot of very good response.
Well, good heavens, bosh, and all that. I hope that they would give you something. I don’t think anybody would do the surgery if they don’t. I would be wrecked without medication. You’re not alone in that. Hopefully by now someone has answered .
And stay off the Internet in terms of looking at Dr. Google without being careful LOL. But seriously I know this is a huge step and we, all your fans here, want to know everything. I hope you’re OK in that the anticipation isn’t too awful and that you can feel peaceful . Or maybe just somewhat peaceful. It’s a big deal. Truly.
Hi my dear. Jolly good, Tophole, Whoops A Daisy etc. How many of these do you want? 😂. Thanks for contributing but it’s been too long! I’ll get there one way or another Kamran
I have PD non tremor- dyskenesia. Had DBS October '22 at Bristol. Assessment team very friendly and reassuring. Operation easy, system worked well. Regulating bandwidth erc a nightmare - ended up spending a week in Rosa Burden. Better now. Still taking meds 5 times a day. DBS definitely having impact though. Decline in speech and dyskesia, can't write any more, more active outside. A mixed bag.
Don't worry about assessment, take someone to accompany you live strong.
I had DBS surgery at Johns Hopkins in the US in March of this year, 7 years after being diagnosed. My PD symptoms were tremors and rigidity. I was maxed out on my C/L dosage (2tabs 5x per day) and starting to get dyskinesias. The rigidity and tremors were so bad for my back muscles that it caused severe pain when walking.
After DBS, my tremors are gone and I am basically off meds (I still take 1mg rasagiline because my doctor believes it has benefits in terms of reducing disease progression). And finding the best settings happened almost immediately. I have since worked with a physical therapist (who does dry needling) to break up the muscle tension that had built up over the years. I am now able to hike, kayak and play tennis. Yeah the surgery was a bit rough (and for me being Off was only a minor issue - although I was worried about it). Bottom line - I am glad I did it. A new lease on life. Best of luck to you!
...sorry, no clever superhero quotes - my grandson is still teaching me who's who
Also, my husband and I built Tass' gloves and we were pretty confident that they were a good replicate of the ones he used. I tried them for about 40 hours total over the span of a month - right up to my surgery, but they had no effect for me. (We guess that maybe the settings were more conducive to gait issues rather than tremor).
Hi Jeeves just wondering did you find out about the availability of the skull mounted dbs device. Did you ask at the hospital?I'm guessing it's probably years away from becoming mainstream.
it’s available at Bristol, but when you compare it to the conventional batteries it seems to lack the power as well as the range of possibilities. I was offered it but turned it down when I realised its limitations.
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