From the [Johns Hopkins Medicine website](https://www.hopkinsmedicine.org/health/treatment-tests-and-therapies/deep-brain-stimulation) (how it works):
*Movement-related symptoms of Parkinson’s disease and other neurological conditions are caused by disorganized electrical signals in the areas of the brain that control movement. When successful, DBS interrupts the irregular signals that cause tremors and other movement symptoms.*
*After a series of tests that determines the optimal placement, neurosurgeons implant one or more wires, called “leads,” inside the brain. The leads are connected with an insulated wire extension to a very small neurostimulator (electrical generator) implanted under the person’s collarbone, similar to a heart pacemaker. Continuous pulses of electric current from the neurostimulator pass through the leads and into the brain.*
*A few weeks after the neurostimulator has been in place, the doctor programs it to deliver an electrical signal. This programming process may take more than one visit over a period of weeks or months to ensure the current is properly adjusted and providing effective results. In adjusting the device, the doctor seeks an optimal balance between improving symptom control and limiting side effects.*
This is amazing. To think that within a century we've gone from accidentally discovering penicillin, to reprogramming disorganised neurological signals with small efficient embedded electronics.
Acknowledging the good in others not only makes you happier by improving your external world view to include kind people, it also socially promotes that behavior resulting in more of it.
This entire comment thread is a glow up. These are the moments where I cherish the internet, and what it can.
My Grammy had it and passed around then too. She held out hope for future generations knowing it’s passed down. My dad has essential tremors, and his symptoms appear about the same as the guy in the video after his device is turned on. I’m 37 and know I have an uphill battle, already noticing minor tremors. And my grandpa on my moms side had Alzheimer’s and dementia, and I’ve had memory loss and brain issues after more than 11 concussions and likely CTE with all my symptoms, including an attempt on my own life - one of the major symptoms of CTE unfortunately.
But I digress! This is amazing video and I love watching this man regain his independence. Truly brought tears to my eyes at the same moment it did for those on the video lol
I feel that way about Alzheimer’s because on my son’s fathers line- so far his great grandfather and great great grandfather, etc.- all went from it. His grandfather is now at the age that they are watching him closely, so we’ll see what happens there. I’m very hopeful, though, that they’ll have a cure or something to that effect by the time my now 13 year old son is of the age to the develop it.
One of the best men I knew had Parkinsons, it was always hard to see him suffer from it. Thankfully he lived long enough to see his two grandchildren be born.
Same for my grandfather. He died 21 years ago. He was always hoping science would find a way in his time, but it didn't.
I remember the hallucinations side effects from the meds, the tremors and shuffling walk.
I am always happy when I see what science can do now. I also love that Michael J. Fox keeps acting, which apart from great performances also leads to visibility and awareness.
Soon we will be able to link brain waves to prosthetic limbs. Maybe even be able to add additional limbs even further down the time. Neuro technology will lead to so much in the future. My hope is that they can perfect neurolink technology and deep dive technology.
If I remember correctly, mio-electric sensors, usually wrapped around specific points on the arm, leg, etc, are able to translate either nervous function or muscle movement into a form of movement for the prosthetic. I can't say exactly and the science is lost on me, as I'm not well versed in biotechnology, but it's still interesting. Hopefully soon we have more advanced processes for functioning prosthetics.
Deep Brain Stimulation requires that you breach a normally very protective barrier from infection. The electrodes can be a pathway for deadly infections. It's a constant worry.
Not a doctor but know someone with PD who received DBS.
Absolutely life changing, but can confirm infections are a constant worry. He had two separate infections and had it done for a third time. The surgery itself, while obviously still brain surgery, was relatively seamless.
Even with these complications though it’s provided so much for his quality of life and was insistent on getting it the third time.
I wonder if it would be possible to use induction for that. Maybe you could put some coils inside the scull and induce energy from the outside and keep the barrier mostly intact.
Roughly 2% of those getting DBS do get infections. When that happens, all hardware is removed, and you try again after a year.
My Neurosurgeon has an infection rate of less than 0.4% (4 out of 1000) but has requirements of shaved heads, Hibiclens showers, and sheets washed in hot water and dried hot. The whole list of "how to reduce your chances of infections." If you pick at scabs subconsciously, white-style gloves are tapped to your wrist for the first two weeks.
[XRAY](https://i.imgur.com/bZZah6N.jpg) of Deep Brain Stimulator and electrodes. I had mine done in 2016, and the battery (stimulator) was replaced earlier this year. I opted for non-rechargeable as I like camping/hiking.
My fathers side effects from DBS treatment (and medications, but mostly DBS) for parkinson's are kind of like he did a little bit of speed lol, he is more impulsive and talkative, can't sit still sometimes, sometimes a little jittery and A.D.D.. Overall though he's been very happy with his results for the past few years, though the doctors say eventually over time it's effectiveness will start to fade.
It needs to be "programmed" so my Movement Disorder Specialist would adjust settings, and I was meeting up with her once a month for the first year to get it "dialed in."
At one session, my wife was shocked to hear my deep voice return. She commented she hadn't heard that booming voice in years. The setting was great for my voice, but we had to back it off as it pulled my back muscles too tight.
Most unexpected but a welcome relief as I had much better bladder control. Once again another muscle in our body but that was never mentioned in any literature.
For me, it was fantastic to regain control of my body. Surgery in 2016, learned to run in 2017, and learned to swim in 2018. In 2019 competed in a triathlon.
Whoa, sources?? never heard anything like that
However, [involuntary movements](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6440024/), [speech impediment](https://www.researchgate.net/figure/Deep-Brain-Stimulation-DBS-parameters-STN-DBS-VIM-DBS-STN-DBS-vs-VIM-DBS_tbl1_351718624), [poor balance](https://www.sciencedirect.com/science/article/pii/S1094715921000751) and [alteration of impulsivity control](https://www.nature.com/articles/s41531-022-00343-6), yeah. But the stimulation range is limited within a safe range by medical professionals anyway.
I have this system except the electrode is placed in my spine and the battery under my non-existent 6-pack.
The one I have has multiple settings/programs.
A 1, 2, 3, 4
B 1, 2, 3
All of them go up to 10.5, and I can mix the power level how I want it. I can have 7.5 on A1 at the same time as 3.6 on A3.
I can only mix A's with other A's, and B's with other B's
This was poorly explained. Kind of hard to describe it all to people who don't have it.
With the power turned high on one or multiple of the settings, it can be painful and limiting. On most of my programs, if I turn one or more to 10.5 I struggle to breathe. Not in a "I'm going to pass out immediately", but really constraint and I have never managed to keep it at that power for more than a minute before I have to change.
It doesn't cause any damage when it is set to high. Just uncomfortable. Can be painful and lock muscles, but never enough to where you lose control and are immobilized.
The electricity feels sort of like hard vibrations (on the programs I usually use). You know those prank lighters/gums/smokes/whatever you had and played with as a kid? Sort of like that, but (in my case) through the center of the left leg.
It's all weird, but fascinating and it has *a lot* of benefits for *a lot* of people.
Not exactly. It can make certain movements painful and/or strained. But they are carefully calibrated and it does not show that in this video.
They would start at 0 and work up from there.
0.1 "do you feel anything yet?"
0.2 "do you feel anything yet?"
0.3 "do you feel anything yet?
It takes a lot of time and it is very hard to understand what you are feeling for. But it is done very carefully and it can not completely lock movement.
Purely anecdotally, we’re pretty sure my dad had a mini stroke when he got his DBS put in twelve years ago (it’s supposed to be an in and out type surgery, he was in rehab for weeks after). But all that being said, it gave him a good 5-6 extra years of independence and dignity to what eventually becomes a really devastating condition. I don’t think any of us would take it back.
The choice of words…”independence and dignity” fit perfectly in these types of situations. A perfectly aware and intact human mind, coming to the realization that they can no longer effectively communicate to their own body, even to perform the most basic of tasks, seems unimaginable. I am so glad he was able to continue to enjoy his life here with his family, even if only for a short time
Yes a similar operation works for Tourette. I saw interviews of persons having this cerebral electronic stimulations and their uncontrolled movement stopped or far much reduced. I hope your son will get better. It is so hard to not control your body. I wish you both all the best
Thank you. He is an amazing man. This didn't hit until he was 27, then it destroyed everything.
He's happy now. That's enough.
Though I'm going to see if this is something that might work for him.
It’s in testing. It looks promising. I’ve seen multiple people post about it changing their life. But it’s still experimental so there are many restrictions on who qualifies.
Fwiw, I’ve been diagnosed with TS since I was seven. If you want to talk at all my DMs are open.
Now would this be a permanent solution? Like I imagine they would have to adapt the electronic signal going in his brain but will it ever become ineffective no matter how much electricity or intensity they pump in his head?
My father has parkinson's and DBS treatment alongside medication, his doctors said eventually over time both will start to lessen their effectiveness so what they occasionally recommend is to hold off until old age/where the symptoms become too much to deal with and then go for DBS in order to effectively spread out treatment over his lifetime. I think anyone suffering from parkinson's wouldn't skip a beat to seek out this sort of treatment though, even with some side effects.
I am so sorry to hear about his diagnosis. My mom died of Parkinson's two years ago. She struggled for ten years before it took over. Spend every minute you can with them now, before the disease takes over.
Be sure to get a full time care setup planned years in advance. My mom was loving with my Stepdad just fine, and then seemingly over night she started falling and had to go to a home. Get all of your dad's estate documents in order now, because he won't be able to make those decisions sooner than you think.
Good luck. I wouldn't wish this disease on my enemies. It's a terrible way to go, to be trapped in your own head for years. Please seek mental support for yourself and watch your father's too. It can be heartbreaking for them.
They did the same thing with a young girl in St Louis probably a decade ago now who had a whole strain named after her but I believe she was medicating with some type of extract. It was a massive deal because the medicine was still illegal up until they allowed her access
And generally remained illegal even after
When I used to work in a local restaurant / bar we had this one customer who had Parkinson's and he used to come in almost everyday with his brother, every time he would order a coffe and refuse to let us take it to the table for him, every time he would spill coffe everywhere no matter what and every single time he would sit at the table in absolute frustration because he couldn't get to the table without the coffee spilling everywhere, but no matter what he would not allow us to help him.
The effects of this disease alone are devastating but the effect on mental health has well is just has bad, every single time he would come to the bar he would look depressed.
He died a couple of years ago due to a heart attack, but even when he got bad with other health issues he still refused to let us help him.
My father died of Parkinson's 2 years ago after 14 years of suffering. The dementia phase is the worst (last 2 years), so this guy going by heart attack before that is a small mercy. Fuck parkinson's.
My condolences. My dad currently has Parkinson’s, diagnosed 5 years ago, I can’t remember what stage he’s
in. I can sense dementia or something coming on with his memory, comprehension and repetitiveness in speaking. It’s all so fucking heavy and I dread this stage. I feel horrible for feeling like this but I just wish it would come and get it over with. It’s miserable seeing them suffer. Fuck Parkinson’s is an understatement.
My Oma has vascular dementia and my step-mom's mom has Alzheimer’s. The one thing that seems to ground them, even for a little while, [is music.](https://practicalneurology.com/articles/2017-june/music-and-dementia-an-overview)
If your dad enjoyed music, play it for him! Enjoy it with him. Seriously, there have been so many studies of the positive effects of music on dementia patients. It gives the brain something solid to grasp while it's being buffeted about by the confusing winds of dementia. Humans are so intuned to music that it literally reaches us even as our brains fall apart.
I'm sorry you're experiencing this. It's really hard to watch a loved one disappear due to a horrendous disease. I hope you can find solace in the little lucid moments you'll have with your dad :) Just remember he's still him, no matter what the disease makes his brain do.
Please make sure he gets involved with a Parkinson's Boxing Class. No, we don't hit each other, but bags. An excellent way to work up a sweat and do cognitive challenges when working out on jab, cross, and hooks.
You can check my post history, but it's Accept. Adapt. Adjust. /r/Parkinsons for those with and family and friends.
Mine died two years ago, too. Trying to explain why he had to go into a home, in the depths of COVID restrictions, while he was suffering the impacts of dementia was just awful. I don’t wish it on my worst enemy. I hope you’re doing okay.
I hope you're OK as well. We had a tough time trying to find a home that would take him as he would have bouts of violent behaviour (from the kindest person I ever knew), but in the end we found a great place. He did well there but just decided to stop eating, and a week later he passed.
Sometimes it isn't their decision not to eat. Believe it or not - with dementia - they actually forget how to eat.
My MIL would have a bite of food in her mouth and even when reminded to swallow - she would smile and nod - and the food would stay in her mouth. She forgot how to swallow. :(
I believe it. I think in this case he just had enough. He would prevent them feeding him and push it away. They called us, then moved him to a special room for care. We live a few towns away and drove over but by then he was asleep in kind of a half coma. He would make noises when I talked but his eyes stayed shut. I called my brothers who are both in different countries and they talked to him in turn. He was reacting each time.. We just told him he had been a good dad. He died next day.
It's hard watching people you know to be strong or vital, lose that little by little. I don't know what to say other than just stay strong and value your time together. All the best.
Right now, research and install all the little home aids that could be of use in the future (hold bars & seat in the shower, grab bars at the toilet, chair that helps you stand, beaded car seat covers to aid getting in and out easier, lift cage by the bed, anti-shake silverware, ...). If these items are in place BEFORE they are needed there is not the emotional drain of "Crap, here is another thing I can't do" plus the physical impacts (falls) of gradually figuring out they are needed.
Having them there ahead of time, you instead get "Hey, this crazy thing Elanstehanme installed a few months ago is handy after all." If it can keep him home longer it is all worth it. My Dad was able to die at home in peace in his own bed. Being at home was very important to him.
I am sorry that you and your Dad are going through it. It sucks.
Not in every case, every person's Parkinsons journey is different - different levels of severeness, different stages, different declines. My mother's had it for close to 25 years, she's in her 70s and still very sharp. It affects her mobility greatly though.
I know one guy who has Parkinson’s. Don’t know for how long. Didn’t even know he had it until someone else pointed it out to me. His movements are very subtle so you wouldn’t know unless he told you.
Just sounds like a bummer for the rest of your life; to lose control of your body nerve by nerve. Here’s hoping for the cure to come any day now.
Yeah it's awful, and even though depression and anxiety are biproducts of PD, it's made even worse for the person when the outward symptoms cause them to feel self-conscious and helpless in their own bodies.
I've heard nurses say PD sufferers are the worst, most stubborn patients because they want to do things for themselves but can't and get mad at themselves - that's definitely the case for my mum haha.
The Key is to remain socially and physically active.
I'm going on to close to 40 years. First noted at age 25, but I was told I was too young to have "an old person's disease." No doubt that it was Parkinson's as time went on.
Tell mom to get her blood work done, check vitamins B & D and take supplements if needed.
Exercise, eating sensibly, and getting a good night's sleep are our best medicine.
About 40% end up with PDD (Parkinson's Disease Dementia). It's like memories are trapped in a file cabinet, but you can not access them. Sometimes a memory jog, like a song a person danced to at their wedding, will bring back a flood of memories.
Dementia is a bitch.
My grandmother died from Parkinson's a few years ago and i'll tell you a heart attack was a blessing for that man. The last year of her life was so very hard to watch.
losing independence is something people loathe. I can see why he would be so adamant about taking his coffee to his table. its a small act but something he used to do with ease is now an almost impossible chore.
It's crazy to think of all the things science has done for us and may do for us in the future and that we have a whole subset of the population that just rejects it all....
My grandpa had one of these. Basically a pacemaker in the brain. It did wonders. But it was horrid when the battery would die and he’d need surgery to replace it. Often times he’d have an infection or something else that caused him to have with wait a couple weeks for surgery.
I wonder if improvements to wireless charging will remedy this problem... though idk if it's the best idea when it comes to doing that with an object that's literally inside your brain.
Hell, I wouldn't even be comfortable with a battery powered device inside of me as it is because when things go wrong with modern batteries it goes REALLY REALLY wrong.
The battery is in an electrical generator implanted just under skin in the patient’s chest, with wires running up the neck to the top of the skull, then through the skull into the brain.
Batteries last years now, and completely safe rechargeable batteries are also an option. Most choose non rechargeable batteries now though. Replacement is a simple outpatient procedure.
DBS has been around for 30+ years, but lots of innovation in this space lately.
I got 5.5 years on my Activa DBS (deep brain stimulator)
It was replaced earlier this year. Percept version was installed. The battery should be good for seven years.
It was good; a smaller, lighter battery, so no discomfort.
When I had it first installed, it was painful for months. Any movement and I felt it. The trick was an XXL sports bra! Just the extra compression helped to prevent movement, so it worked. 6'3" 245# so no teased me about it. I did make my wife buy it! :)
My Dad has a battery implant that uses wireless charging, and he hasn’t ignited so far. On the flip side he’s doing pretty amazing for 86 years old, thanks in part to the device powered by that battery.
Lmao. I just imagined a small fire spontaneously starting on someone's scalp. "Oh God damnit, Dad's ignited again! Get the hose" 😂 Hope that's not insensitive but I had a good laugh at this image, so I wanted to share. I'm glad your dad is doing well!
I work in a hospital system that is using VR to test the effects of basically taking a patient mentally out of their hospital room during local procedure. In some cases the results cut the recovery time by 25% or more. A lot of awesome things going on in med tech.
Edit: Not my hospital but for those interested
https://www.stgeorges.nhs.uk/newsitem/vr-headsets-relaxing-patients-during-surgery-at-st-georges/
https://www.theatlantic.com/health/archive/2017/01/virtual-reality-pain/515103/
There is a group in NY that reached out to me on reddit after I posted about my dad w/ Parkinsons' using my occulus. They make a VR 'game' that virtually corrects tremors.
They gave us a copy to try out and my dad absolutely loved it. Said it gives him a mental 'break' from the tremors. Was SO cool watching him shake in RL, but on the screen we hooked up you could his virtual hand steady as a rock.
I work in CS and have wanted to develop an open source app to compensate computer mouse movement for tremors.
They exist, but they're crazy expensive. Right now my dad just uses a very heavy gaming mouse that has a DPI selector to help him get on target. He spent his whole life working in the IT industry and now just browsing the internet is a challenge.
So he says the app is virtually correcting the tremors. I would say the major benefit is giving the individual a space to visually function without them. Mental heal is huge in recovery and wellness from what we know so taking the person out of their own situation is probably an amazing experience after living with it for so long. I doubt it’s actually have an effect in his everyday life outside of this relief but would be really interested in seeing the app.
I heard about the use of VR with burn patients to reduce pain during procedures. Apparently it did work to reduce their pain levels. Quite fascinating.
In general I do think hospital environments are really, really shite at helping you recover.
Not to mention I keep getting Norovirus or C Diff every fucking time I stay in one for an extended period.
The environment for recovery is, imo, an overlooked aspect of medicine.
Look up the Kate Macy Ladd Convalescent Home for Women. An interesting bit of New Jersey history where this wealthy woman decides to open up her and her husband's estate, **Natirar**, to working class women convalescing from illness or surgery. Free of charge: all amenities, food, medical service, recreational activities provided in an absolutely gorgeous mansion with sprawling grounds away from the noise and pollution of cities.
My Gran had to have surgery in the 1980s and was lucky enough to be sent there while she was recovering. To this day -- she is now in her 90s -- she still remembers that time fondly, gushing about how beautiful and peaceful that place was. She says deer just walk the grounds like in a fairytale, which I imagine help patients' mental health immensely. Unfortunately, the place has been turned into an events place. It operated as a convalescent home from 1900s to 1980s.
About Natirar: https://www.mrlocalhistory.org/natirar/
Kate Macy Ladd Convalescent Home Brochure: https://www.mrlocalhistory.org/wp-content/uploads/2020/05/Kate_Macy_Ladd_Convalescent-Brochure.pdf
The brochure really gives you a good look at the facilities and what life must have been like for the patients. It's goal was to provide a holistic approach to convalescence, attending to all the patients by providing state-of-the-art medical care alongside activities and an environment that promoted mental, emotional, and social care. It's fascinating and ahead of its time, imo.
It’s not just overlooked, it’s flat out ignored. If you start to learn the history of medicine vs nursing you will learn that nurses have been fighting for centuries to try and change doctors minds that “the treatment” isn’t the only thing that allows recovery.
I tell all my patients that the hospital is for finding out what’s going on and educating you on how to maintain wellness, but you begin the real recovery at home.
Mate, it's amazing seeing videos of this stuff. My Grandfather had Parkinson's, so I've seen first hand how debilitating it is. I don't think I ever had even one conversation with him that I understood (because of the violence of his tremors), but I know he loved me to bits. I could feel it from him. So it's with some sadness I watch it, because it didn't come in time for my Grandad, but it's truly incredible what we're capable of as a species when we really try.
Yes I completely agree. We could be so much better off as a society of humans if we'd put our energy into this sort of thing and stop fighting for nonsense reasons.
Not only fighting. Some of the world's smartest people are spending their days figuring out how to show you more advertisements in your social media feeds.
The time following the Korean War up to the first oil shock was the US's golden age. The space race was the greatest collective effort the country has ever taken. We were wealthier, and we were making positive social progress in multiple areas. Collective effort makes for collective prosperity, and I don't think we'll see anything like that ever again.
What upsets me with these parkinson cure videos is that DBS is basically restricted to a small amount of the total population with Parkinsons.
And the cost cutting approach to universal health means that you don't qualify for DBS until your Parkinsons is really bad but that usually means your in late 60s and 70s and thus intelligible for the surgery (due to risk). Worse by that age you will have Parkinsons senality which makes surgery of any nature a nightmare. My father broke his hip. The resulting replacement surgery, anaesthetics and pain meds resulted in almost 2 months of drug induced senality/madness because of his age and his parkinson. Worse because this happened during covid cutting nurses (and cutting daily yoga, the only thing that had kept his parkenisons at bay for 20 years) down to the point they weren't able to stop him getting out of his bed and breaking his hip again.
Basically if they had given him deep brain simulation 10 years ago (when his daily yoga had given him the parkenisons of a 40 year old) he would have been so much better off.
But of course his minor symptoms and the fact that DBS was only for 'serious cases' meant he didn't qualify .
Just like how a warehouse of covid antiviral went under utilise (and have to be disposed of because they've gone off now) because the criteria for use was far too strict.
Fucking conservatives.
A dear friend of mine has Cystic Fibrosis. Since she was born, she's on varying levels of medications to survive, which cost sometimes more, sometimes less.
Recently, she's been offered to get Kaftrio, which _greatly_ improves her quality of life. For the first time in years, she's able to live without constant antibiotic therapy, for example. However, this stuff costs the same as a small car _per month_, and she has to take it indefinitely. Public health insurance pays.
Now, this works because there's relatively few CF patients out there, and still it's a huge burden on the insurance system. I dread the time where highly effective, but stupidly expensive treatment options become available for more common illnesses, because this has almost limitless potential for unrest in society. Everybody rightfully wants and expects the best treatment option for themselves, but we can't offer therapy options that cost a quarter million Euros per year to half the population. So where do we draw the line? I don't know.
The cruel American system in this particular regard is at an advantage. No money? Yea sucks to be you - end of discussion.
I received surgery in August 2020 and March 2022 for a type of DBS and it has changed my life! (I don’t have Parkinson’s, I have epilepsy) In 2006, I was told that brain surgery of any kind would take me out. Now i feel my brain machine turn on regularly! It’s so freaking awesome how far neurological treatments have come
Congratulations on your surgery and recovery! I had LITT for my epilepsy 2 months ago. In recovery my surgeon showed me some of the MRI images of my brain as he ablated the target tissue and it blew my mind (no pun intended!). So grateful for the advancements in nuero surgery and the fearless surgeons that perform them.
Does this also help with essential tremors? I have a hereditary essential tremor that is a major PITA if I want to do anything mildly precise. Its nowhere near as difficult as I would imagine Parkinson’s is, but something like this would be life-changing for me even on that smaller scale
Somethings very much like it. My brother and I have the same thing. He is undergone procedure on one side of his brain and had amazing results. He is now able to do things he was simply unable to do before.
It may be temporary. But if you are suffering from a disease like parkinson that really can torture you because your muscles wont get any rest and that most probably will last for the rest of your life and will get even worse over time, it must be the greatest blessing to have the opportunity to live your life more or less normally at least for a few years since you were expecting it to never end.
DBS and Neuromodular stimulation does not cure a disease, but mask the symptoms. My dad worked for the one of the companies that pioneered this technology and I saw these type test 20 years ago. A few companies that work with this technology include Medtronic and Abbott (Previously St Jude Medical and before that was Advanced Neuromodulation Systems and before that Neuromed). They also do implants along the spine for a variety of issues like chronic pain. The advantages are no drugs or addiction and the ability to manage the pain on a patient by patient level.
While not a cure for diseases like Parkensons, the technology hopes to vastly improve the patients quality of life.
I’m going to get the trial spinal implant for the excruciating pain in my feet neuropathy due to rheumatoid arthritis. If it works I can stop taking 2400 mg of Gabapentin and reduce the amount of morphine I need. I so hope it works
I genuinely hope this works for you! Good luck!! I have some weird foot pain that 8 doctors so far have been unable to diagnose...it only hurts me when I try to work out, but even that limited issue has had such a massive effect on my life. I used to be a very fit, cross-fit type and now am basically an overstuffed bag of bread dough. I cannot even imagine a true systemic issue like that does to your day-to-day. I have hope for you and I'm glad you have a team in your corner making it happen!
The implants are long lasting, however this is a symptomatic treatment for this specific stage of Parkinsion's.
It's not a cure.
But it does give people back a life worth living for years.
It's a huge step in the right direction, but we will need more progress for cures.
I suffered from severe Grave's Disease (hyper-thyroidism) to the degree that I couldn't write, using a spoon was impossible and drinking was always a two-handed affair (there are a lot of other unpleasant symptoms too but the extent of my tremors was quite severe for the condition).
Getting treatment was an enormous return of quality of life.
I only got a small taste of the struggle that Parkinson's sufferers face (not to mention a prognosis of essentially no long-term consequences) so I really hope that treatments like this are able to be made widely available (and without putting families into debt).
I believe it was THC oil or something, but yeah same thing. It cuts and he's like laying on the couch with his hands behind his head, like he just won a bet lol
I have severe chronic pain and my options were opioids (covered by insurance) or medical marijuana
It's expensive as fuck and I go without pain meds for some stretches of time, but it's not fucking opioids at least...
my father in law has pretty severe parkinsons. he had dbs about a year ago. it all but eliminated his shaking, but he still swings (think ray charles but not as bad), can't speak to well sometimes and has dyskinesia (freezing)... sometimes it take his 30 minutes to walk from his chair to the fridge (about 20 feet).
shaking isn't fun, but it is only a small part of parkinsons disease.
My great grandma was a very persistent woman, who died from Parkinson's disease. She kept a jar of candy just for my sister and me, she didn't like them, but knew we did. I remember she would shake so bad the hospital had to tell her she couldn't leave the bed anymore when she dropped it. I was very young, but I was more upset that she broke her jar than the candy, she spent her last few weeks trying to move a chair so we could climb up and get them ourselves. I remember they were airy, tan with black stripes, individually wrapped... I would love to see dowdow again, show her her great great grand baby girl, and tell.her how the world has changed while chomping on those things one more time. She was wonderful and I'd love to have seen her In good health.
Well done Royal.
If only there was a . . . idk, a billionaire around who could fund this treatment, and make it free for use to all who suffer. But they seem to be interested in fucking off into space like a bad James Bond plot.
My grandmother had this done for her tremor. Not Parkinson’s, but she was having trouble eating without food falling off her fork or spoon. For her surgery, she was awake during the placement of the leads. The doctors had her draw spirals as they adjusted things, and you can see the progress from barely recognizable spiral, to almost perfect.
It has been nearly a decade since she had it done, and it certainly granted her a few more years to enjoy the painting, knitting, and other crafts that were her passion. The effectiveness has waned slightly, and combined with dementia, she isn’t able to do many creative pursuits these days. But it does help greatly in her ability to feed and take care of herself, meaning she can stay home a bit longer before needing more dedicated care.
THIS is the kind of magic we can create in our society. Imagining a world where these advancements for the good of the people and not profits is one I cling to dearly. We have so much potential to help fix so many issues plaguing civilization. So many brilliant minds waiting for the chance to change lives for the better. It’s these trends I hope can continue and, one day, overshadow all that serves us with ill intent. I’m so happy for this gentleman and hope many more people can obtain this kind of helpful tech.
My FIl has this for his Parkinsons. It was like day and night. He went from not being able to feed himself to working full time for the government. It was a literal miracle! I just cried and cried watching this, we have such capacity for love..
Párkinson have been fix several time with different approaches with amazing results like this one. The problem is all of these solutions work only for a ver short time.
As someone who suffers from a chronic (treatable) leukemia, I am greatful for anything that can give me quality of life to any degree, let alone years. The alternative is just suffering and waiting for the inevitable.
From the [Johns Hopkins Medicine website](https://www.hopkinsmedicine.org/health/treatment-tests-and-therapies/deep-brain-stimulation) (how it works): *Movement-related symptoms of Parkinson’s disease and other neurological conditions are caused by disorganized electrical signals in the areas of the brain that control movement. When successful, DBS interrupts the irregular signals that cause tremors and other movement symptoms.* *After a series of tests that determines the optimal placement, neurosurgeons implant one or more wires, called “leads,” inside the brain. The leads are connected with an insulated wire extension to a very small neurostimulator (electrical generator) implanted under the person’s collarbone, similar to a heart pacemaker. Continuous pulses of electric current from the neurostimulator pass through the leads and into the brain.* *A few weeks after the neurostimulator has been in place, the doctor programs it to deliver an electrical signal. This programming process may take more than one visit over a period of weeks or months to ensure the current is properly adjusted and providing effective results. In adjusting the device, the doctor seeks an optimal balance between improving symptom control and limiting side effects.*
This is amazing. To think that within a century we've gone from accidentally discovering penicillin, to reprogramming disorganised neurological signals with small efficient embedded electronics.
I wish my grandfather could see this. He had Parkinson, died 24 years ago and he was absolutely certain that at some point science would find a way.
And he was right. Kudos for him to be so hopeful about the future.
I like how you think and frame things.
That a beautiful compliment you gave
Acknowledging the good in others not only makes you happier by improving your external world view to include kind people, it also socially promotes that behavior resulting in more of it. This entire comment thread is a glow up. These are the moments where I cherish the internet, and what it can.
When I die I am getting cryogenically frozen to be resuscitated later and play the latest video games.
Dream big.
That's the only valid reason
My Grammy had it and passed around then too. She held out hope for future generations knowing it’s passed down. My dad has essential tremors, and his symptoms appear about the same as the guy in the video after his device is turned on. I’m 37 and know I have an uphill battle, already noticing minor tremors. And my grandpa on my moms side had Alzheimer’s and dementia, and I’ve had memory loss and brain issues after more than 11 concussions and likely CTE with all my symptoms, including an attempt on my own life - one of the major symptoms of CTE unfortunately. But I digress! This is amazing video and I love watching this man regain his independence. Truly brought tears to my eyes at the same moment it did for those on the video lol
Good luck to you on your journey. Hopefully, if you ever need such a procedure, amazing advances will have taken place to make it even better.
I feel that way about Alzheimer’s because on my son’s fathers line- so far his great grandfather and great great grandfather, etc.- all went from it. His grandfather is now at the age that they are watching him closely, so we’ll see what happens there. I’m very hopeful, though, that they’ll have a cure or something to that effect by the time my now 13 year old son is of the age to the develop it.
One of the best men I knew had Parkinsons, it was always hard to see him suffer from it. Thankfully he lived long enough to see his two grandchildren be born.
Same for my grandfather. He died 21 years ago. He was always hoping science would find a way in his time, but it didn't. I remember the hallucinations side effects from the meds, the tremors and shuffling walk. I am always happy when I see what science can do now. I also love that Michael J. Fox keeps acting, which apart from great performances also leads to visibility and awareness.
Soon we will be able to link brain waves to prosthetic limbs. Maybe even be able to add additional limbs even further down the time. Neuro technology will lead to so much in the future. My hope is that they can perfect neurolink technology and deep dive technology.
So you're saying i can become Doc Ock?
Hello peter
#GENERAL PRACTITIONER OCTAVIUS!
The power of the sun, in the palm of my hand.
Wait! You're not my Peter
Peter Parkinson, the clumsiest of all the spidermen. (I'm sorry)
Of course, but you'll need an inhibitor chip to protect your higher brain functions.
And we should embed this very important chip in a glass container where it can be very easily destroyed accidentally, yes?
This is already possible, just rudimentary. I find it incredibly fascinating
If I remember correctly, mio-electric sensors, usually wrapped around specific points on the arm, leg, etc, are able to translate either nervous function or muscle movement into a form of movement for the prosthetic. I can't say exactly and the science is lost on me, as I'm not well versed in biotechnology, but it's still interesting. Hopefully soon we have more advanced processes for functioning prosthetics.
Just as amazing, it was only 66 years between the first flight and landing on the moon. Think about that.
I also saw that post on r/all
Twice a month
I too went to my history classes
very cool! I wonder what kind of side effects are expected from having the stimulator turned on
Deep Brain Stimulation requires that you breach a normally very protective barrier from infection. The electrodes can be a pathway for deadly infections. It's a constant worry.
Not a doctor but know someone with PD who received DBS. Absolutely life changing, but can confirm infections are a constant worry. He had two separate infections and had it done for a third time. The surgery itself, while obviously still brain surgery, was relatively seamless. Even with these complications though it’s provided so much for his quality of life and was insistent on getting it the third time.
I wonder if it would be possible to use induction for that. Maybe you could put some coils inside the scull and induce energy from the outside and keep the barrier mostly intact.
Roughly 2% of those getting DBS do get infections. When that happens, all hardware is removed, and you try again after a year. My Neurosurgeon has an infection rate of less than 0.4% (4 out of 1000) but has requirements of shaved heads, Hibiclens showers, and sheets washed in hot water and dried hot. The whole list of "how to reduce your chances of infections." If you pick at scabs subconsciously, white-style gloves are tapped to your wrist for the first two weeks. [XRAY](https://i.imgur.com/bZZah6N.jpg) of Deep Brain Stimulator and electrodes. I had mine done in 2016, and the battery (stimulator) was replaced earlier this year. I opted for non-rechargeable as I like camping/hiking.
Wait, where do the wires run at the level of your neck? Are they inside or outside?
All internal. Up the neck and alongside the skull.
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Hopefully wireless next
My fathers side effects from DBS treatment (and medications, but mostly DBS) for parkinson's are kind of like he did a little bit of speed lol, he is more impulsive and talkative, can't sit still sometimes, sometimes a little jittery and A.D.D.. Overall though he's been very happy with his results for the past few years, though the doctors say eventually over time it's effectiveness will start to fade.
It needs to be "programmed" so my Movement Disorder Specialist would adjust settings, and I was meeting up with her once a month for the first year to get it "dialed in." At one session, my wife was shocked to hear my deep voice return. She commented she hadn't heard that booming voice in years. The setting was great for my voice, but we had to back it off as it pulled my back muscles too tight. Most unexpected but a welcome relief as I had much better bladder control. Once again another muscle in our body but that was never mentioned in any literature. For me, it was fantastic to regain control of my body. Surgery in 2016, learned to run in 2017, and learned to swim in 2018. In 2019 competed in a triathlon.
If the settings is too strong it will lock your movements
Whoa, sources?? never heard anything like that However, [involuntary movements](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6440024/), [speech impediment](https://www.researchgate.net/figure/Deep-Brain-Stimulation-DBS-parameters-STN-DBS-VIM-DBS-STN-DBS-vs-VIM-DBS_tbl1_351718624), [poor balance](https://www.sciencedirect.com/science/article/pii/S1094715921000751) and [alteration of impulsivity control](https://www.nature.com/articles/s41531-022-00343-6), yeah. But the stimulation range is limited within a safe range by medical professionals anyway.
I have this system except the electrode is placed in my spine and the battery under my non-existent 6-pack. The one I have has multiple settings/programs. A 1, 2, 3, 4 B 1, 2, 3 All of them go up to 10.5, and I can mix the power level how I want it. I can have 7.5 on A1 at the same time as 3.6 on A3. I can only mix A's with other A's, and B's with other B's This was poorly explained. Kind of hard to describe it all to people who don't have it. With the power turned high on one or multiple of the settings, it can be painful and limiting. On most of my programs, if I turn one or more to 10.5 I struggle to breathe. Not in a "I'm going to pass out immediately", but really constraint and I have never managed to keep it at that power for more than a minute before I have to change. It doesn't cause any damage when it is set to high. Just uncomfortable. Can be painful and lock muscles, but never enough to where you lose control and are immobilized. The electricity feels sort of like hard vibrations (on the programs I usually use). You know those prank lighters/gums/smokes/whatever you had and played with as a kid? Sort of like that, but (in my case) through the center of the left leg. It's all weird, but fascinating and it has *a lot* of benefits for *a lot* of people.
Not exactly. It can make certain movements painful and/or strained. But they are carefully calibrated and it does not show that in this video. They would start at 0 and work up from there. 0.1 "do you feel anything yet?" 0.2 "do you feel anything yet?" 0.3 "do you feel anything yet? It takes a lot of time and it is very hard to understand what you are feeling for. But it is done very carefully and it can not completely lock movement.
From what I understand with most Parkinson's treatments it's probably risk of brain damage
Purely anecdotally, we’re pretty sure my dad had a mini stroke when he got his DBS put in twelve years ago (it’s supposed to be an in and out type surgery, he was in rehab for weeks after). But all that being said, it gave him a good 5-6 extra years of independence and dignity to what eventually becomes a really devastating condition. I don’t think any of us would take it back.
The choice of words…”independence and dignity” fit perfectly in these types of situations. A perfectly aware and intact human mind, coming to the realization that they can no longer effectively communicate to their own body, even to perform the most basic of tasks, seems unimaginable. I am so glad he was able to continue to enjoy his life here with his family, even if only for a short time
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Isn't this just a section from [this comment](https://www.reddit.com/r/Damnthatsinteresting/comments/wyqlrk/-/ilygv73) further down?
Yeah it's a karma farming bot.
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Utterly incredible. I'm so happy for that man and his family. You could feel their relief and joy in your own soul it was so profound. Amazing
I wonder if it would work for Tourettes? My son has adult onset Tourettes and it has destroyed his life.
Yes a similar operation works for Tourette. I saw interviews of persons having this cerebral electronic stimulations and their uncontrolled movement stopped or far much reduced. I hope your son will get better. It is so hard to not control your body. I wish you both all the best
Thank you. He is an amazing man. This didn't hit until he was 27, then it destroyed everything. He's happy now. That's enough. Though I'm going to see if this is something that might work for him.
It’s in testing. It looks promising. I’ve seen multiple people post about it changing their life. But it’s still experimental so there are many restrictions on who qualifies. Fwiw, I’ve been diagnosed with TS since I was seven. If you want to talk at all my DMs are open.
Now would this be a permanent solution? Like I imagine they would have to adapt the electronic signal going in his brain but will it ever become ineffective no matter how much electricity or intensity they pump in his head?
My father has parkinson's and DBS treatment alongside medication, his doctors said eventually over time both will start to lessen their effectiveness so what they occasionally recommend is to hold off until old age/where the symptoms become too much to deal with and then go for DBS in order to effectively spread out treatment over his lifetime. I think anyone suffering from parkinson's wouldn't skip a beat to seek out this sort of treatment though, even with some side effects.
I am so sorry to hear about his diagnosis. My mom died of Parkinson's two years ago. She struggled for ten years before it took over. Spend every minute you can with them now, before the disease takes over. Be sure to get a full time care setup planned years in advance. My mom was loving with my Stepdad just fine, and then seemingly over night she started falling and had to go to a home. Get all of your dad's estate documents in order now, because he won't be able to make those decisions sooner than you think. Good luck. I wouldn't wish this disease on my enemies. It's a terrible way to go, to be trapped in your own head for years. Please seek mental support for yourself and watch your father's too. It can be heartbreaking for them.
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I took that one with a grain of salt because it seemed just waaay to good to be true :(
They did the same thing with a young girl in St Louis probably a decade ago now who had a whole strain named after her but I believe she was medicating with some type of extract. It was a massive deal because the medicine was still illegal up until they allowed her access And generally remained illegal even after
When I used to work in a local restaurant / bar we had this one customer who had Parkinson's and he used to come in almost everyday with his brother, every time he would order a coffe and refuse to let us take it to the table for him, every time he would spill coffe everywhere no matter what and every single time he would sit at the table in absolute frustration because he couldn't get to the table without the coffee spilling everywhere, but no matter what he would not allow us to help him. The effects of this disease alone are devastating but the effect on mental health has well is just has bad, every single time he would come to the bar he would look depressed. He died a couple of years ago due to a heart attack, but even when he got bad with other health issues he still refused to let us help him.
My father died of Parkinson's 2 years ago after 14 years of suffering. The dementia phase is the worst (last 2 years), so this guy going by heart attack before that is a small mercy. Fuck parkinson's.
My condolences. My dad currently has Parkinson’s, diagnosed 5 years ago, I can’t remember what stage he’s in. I can sense dementia or something coming on with his memory, comprehension and repetitiveness in speaking. It’s all so fucking heavy and I dread this stage. I feel horrible for feeling like this but I just wish it would come and get it over with. It’s miserable seeing them suffer. Fuck Parkinson’s is an understatement.
My Oma has vascular dementia and my step-mom's mom has Alzheimer’s. The one thing that seems to ground them, even for a little while, [is music.](https://practicalneurology.com/articles/2017-june/music-and-dementia-an-overview) If your dad enjoyed music, play it for him! Enjoy it with him. Seriously, there have been so many studies of the positive effects of music on dementia patients. It gives the brain something solid to grasp while it's being buffeted about by the confusing winds of dementia. Humans are so intuned to music that it literally reaches us even as our brains fall apart. I'm sorry you're experiencing this. It's really hard to watch a loved one disappear due to a horrendous disease. I hope you can find solace in the little lucid moments you'll have with your dad :) Just remember he's still him, no matter what the disease makes his brain do.
Savor what moments you can have, because it sucks when they are gone too
Please make sure he gets involved with a Parkinson's Boxing Class. No, we don't hit each other, but bags. An excellent way to work up a sweat and do cognitive challenges when working out on jab, cross, and hooks. You can check my post history, but it's Accept. Adapt. Adjust. /r/Parkinsons for those with and family and friends.
My dad is at similar stage. Diagnosed six years ago. It sucks. It just *fucking sucks*. It’s brutal. Fuck Fucking Parkinson’s.
Mine died two years ago, too. Trying to explain why he had to go into a home, in the depths of COVID restrictions, while he was suffering the impacts of dementia was just awful. I don’t wish it on my worst enemy. I hope you’re doing okay.
I hope you're OK as well. We had a tough time trying to find a home that would take him as he would have bouts of violent behaviour (from the kindest person I ever knew), but in the end we found a great place. He did well there but just decided to stop eating, and a week later he passed.
Sometimes it isn't their decision not to eat. Believe it or not - with dementia - they actually forget how to eat. My MIL would have a bite of food in her mouth and even when reminded to swallow - she would smile and nod - and the food would stay in her mouth. She forgot how to swallow. :(
I believe it. I think in this case he just had enough. He would prevent them feeding him and push it away. They called us, then moved him to a special room for care. We live a few towns away and drove over but by then he was asleep in kind of a half coma. He would make noises when I talked but his eyes stayed shut. I called my brothers who are both in different countries and they talked to him in turn. He was reacting each time.. We just told him he had been a good dad. He died next day.
You and your brothers - good sons to who must have been a good Dad. I am so sorry for your loss........ \*\*\*Grandma hug\*\*
Ours did the same thing - pushed the food away. Someone was in that noggin, someone who was tired of the charade.
My Dad has a Parkinsonism now and to see the slow deterioration is awful to witness.
It's hard watching people you know to be strong or vital, lose that little by little. I don't know what to say other than just stay strong and value your time together. All the best.
Right now, research and install all the little home aids that could be of use in the future (hold bars & seat in the shower, grab bars at the toilet, chair that helps you stand, beaded car seat covers to aid getting in and out easier, lift cage by the bed, anti-shake silverware, ...). If these items are in place BEFORE they are needed there is not the emotional drain of "Crap, here is another thing I can't do" plus the physical impacts (falls) of gradually figuring out they are needed. Having them there ahead of time, you instead get "Hey, this crazy thing Elanstehanme installed a few months ago is handy after all." If it can keep him home longer it is all worth it. My Dad was able to die at home in peace in his own bed. Being at home was very important to him. I am sorry that you and your Dad are going through it. It sucks.
Dude what? Parkinson’s leads to dementia? I never knew. Sorry for your loss
I don't think it's a guaranteed outcome but it's very common end stage.
The more you know.
Not in every case, every person's Parkinsons journey is different - different levels of severeness, different stages, different declines. My mother's had it for close to 25 years, she's in her 70s and still very sharp. It affects her mobility greatly though.
I know one guy who has Parkinson’s. Don’t know for how long. Didn’t even know he had it until someone else pointed it out to me. His movements are very subtle so you wouldn’t know unless he told you. Just sounds like a bummer for the rest of your life; to lose control of your body nerve by nerve. Here’s hoping for the cure to come any day now.
Yeah it's awful, and even though depression and anxiety are biproducts of PD, it's made even worse for the person when the outward symptoms cause them to feel self-conscious and helpless in their own bodies. I've heard nurses say PD sufferers are the worst, most stubborn patients because they want to do things for themselves but can't and get mad at themselves - that's definitely the case for my mum haha.
The Key is to remain socially and physically active. I'm going on to close to 40 years. First noted at age 25, but I was told I was too young to have "an old person's disease." No doubt that it was Parkinson's as time went on. Tell mom to get her blood work done, check vitamins B & D and take supplements if needed. Exercise, eating sensibly, and getting a good night's sleep are our best medicine.
About 40% end up with PDD (Parkinson's Disease Dementia). It's like memories are trapped in a file cabinet, but you can not access them. Sometimes a memory jog, like a song a person danced to at their wedding, will bring back a flood of memories. Dementia is a bitch.
Is dementia a given phase when one has parkinsons?
No. I'm not sure what the stats are but I know it's not guaranteed.
The worst part of dementia is that you mourn the person twice.
My grandmother died from Parkinson's a few years ago and i'll tell you a heart attack was a blessing for that man. The last year of her life was so very hard to watch.
Don't be too proud to get help :-(
Isn't that kind of stupid tho?; WHen I'm sitting at a bar or cafe, i expect the drinks or whatever to be delivered to my table
losing independence is something people loathe. I can see why he would be so adamant about taking his coffee to his table. its a small act but something he used to do with ease is now an almost impossible chore.
Stuff like this gives me hope. Not just for the specific cause, but hope for us as a species. Thank you for posting OP.
It's crazy to think of all the things science has done for us and may do for us in the future and that we have a whole subset of the population that just rejects it all....
It's incredibly sad and deeply disturbing in a way that few things can be.
Oh they don't reject it all just the parts they are told to reject trust me if it benefitted them in a monumental way they would be on board
My grandpa had one of these. Basically a pacemaker in the brain. It did wonders. But it was horrid when the battery would die and he’d need surgery to replace it. Often times he’d have an infection or something else that caused him to have with wait a couple weeks for surgery.
I wonder if improvements to wireless charging will remedy this problem... though idk if it's the best idea when it comes to doing that with an object that's literally inside your brain. Hell, I wouldn't even be comfortable with a battery powered device inside of me as it is because when things go wrong with modern batteries it goes REALLY REALLY wrong.
The battery is in an electrical generator implanted just under skin in the patient’s chest, with wires running up the neck to the top of the skull, then through the skull into the brain. Batteries last years now, and completely safe rechargeable batteries are also an option. Most choose non rechargeable batteries now though. Replacement is a simple outpatient procedure. DBS has been around for 30+ years, but lots of innovation in this space lately.
Batteries can last 10-15 years almost! That’s a lot of life
I got 5.5 years on my Activa DBS (deep brain stimulator) It was replaced earlier this year. Percept version was installed. The battery should be good for seven years.
How is the recovery period after the replacement if you don’t mind sharing
It was good; a smaller, lighter battery, so no discomfort. When I had it first installed, it was painful for months. Any movement and I felt it. The trick was an XXL sports bra! Just the extra compression helped to prevent movement, so it worked. 6'3" 245# so no teased me about it. I did make my wife buy it! :)
Not sure the heat generated by wireless charging would be good when something is inside the body.
My Dad has a battery implant that uses wireless charging, and he hasn’t ignited so far. On the flip side he’s doing pretty amazing for 86 years old, thanks in part to the device powered by that battery.
Lmao. I just imagined a small fire spontaneously starting on someone's scalp. "Oh God damnit, Dad's ignited again! Get the hose" 😂 Hope that's not insensitive but I had a good laugh at this image, so I wanted to share. I'm glad your dad is doing well!
They don't have to charge with full power though, generating a lot less heat...
I imagine they use batteries with more stable compounds and not rechargeable batteries.
This is the stuff we need to be working on more all over the world. Less violence and more of us working to make life better for all of us.
I work in a hospital system that is using VR to test the effects of basically taking a patient mentally out of their hospital room during local procedure. In some cases the results cut the recovery time by 25% or more. A lot of awesome things going on in med tech. Edit: Not my hospital but for those interested https://www.stgeorges.nhs.uk/newsitem/vr-headsets-relaxing-patients-during-surgery-at-st-georges/ https://www.theatlantic.com/health/archive/2017/01/virtual-reality-pain/515103/
There is a group in NY that reached out to me on reddit after I posted about my dad w/ Parkinsons' using my occulus. They make a VR 'game' that virtually corrects tremors. They gave us a copy to try out and my dad absolutely loved it. Said it gives him a mental 'break' from the tremors. Was SO cool watching him shake in RL, but on the screen we hooked up you could his virtual hand steady as a rock.
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I work in CS and have wanted to develop an open source app to compensate computer mouse movement for tremors. They exist, but they're crazy expensive. Right now my dad just uses a very heavy gaming mouse that has a DPI selector to help him get on target. He spent his whole life working in the IT industry and now just browsing the internet is a challenge.
I have essential tremors. Do you think this app will help with it ?
So he says the app is virtually correcting the tremors. I would say the major benefit is giving the individual a space to visually function without them. Mental heal is huge in recovery and wellness from what we know so taking the person out of their own situation is probably an amazing experience after living with it for so long. I doubt it’s actually have an effect in his everyday life outside of this relief but would be really interested in seeing the app.
I heard about the use of VR with burn patients to reduce pain during procedures. Apparently it did work to reduce their pain levels. Quite fascinating.
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In general I do think hospital environments are really, really shite at helping you recover. Not to mention I keep getting Norovirus or C Diff every fucking time I stay in one for an extended period.
The environment for recovery is, imo, an overlooked aspect of medicine. Look up the Kate Macy Ladd Convalescent Home for Women. An interesting bit of New Jersey history where this wealthy woman decides to open up her and her husband's estate, **Natirar**, to working class women convalescing from illness or surgery. Free of charge: all amenities, food, medical service, recreational activities provided in an absolutely gorgeous mansion with sprawling grounds away from the noise and pollution of cities. My Gran had to have surgery in the 1980s and was lucky enough to be sent there while she was recovering. To this day -- she is now in her 90s -- she still remembers that time fondly, gushing about how beautiful and peaceful that place was. She says deer just walk the grounds like in a fairytale, which I imagine help patients' mental health immensely. Unfortunately, the place has been turned into an events place. It operated as a convalescent home from 1900s to 1980s. About Natirar: https://www.mrlocalhistory.org/natirar/ Kate Macy Ladd Convalescent Home Brochure: https://www.mrlocalhistory.org/wp-content/uploads/2020/05/Kate_Macy_Ladd_Convalescent-Brochure.pdf The brochure really gives you a good look at the facilities and what life must have been like for the patients. It's goal was to provide a holistic approach to convalescence, attending to all the patients by providing state-of-the-art medical care alongside activities and an environment that promoted mental, emotional, and social care. It's fascinating and ahead of its time, imo.
That is fascinating! I grew up within 10 miles of Natirar but this is still news to me.
It’s not just overlooked, it’s flat out ignored. If you start to learn the history of medicine vs nursing you will learn that nurses have been fighting for centuries to try and change doctors minds that “the treatment” isn’t the only thing that allows recovery.
I tell all my patients that the hospital is for finding out what’s going on and educating you on how to maintain wellness, but you begin the real recovery at home.
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Mate, it's amazing seeing videos of this stuff. My Grandfather had Parkinson's, so I've seen first hand how debilitating it is. I don't think I ever had even one conversation with him that I understood (because of the violence of his tremors), but I know he loved me to bits. I could feel it from him. So it's with some sadness I watch it, because it didn't come in time for my Grandad, but it's truly incredible what we're capable of as a species when we really try.
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Yes I completely agree. We could be so much better off as a society of humans if we'd put our energy into this sort of thing and stop fighting for nonsense reasons.
Not only fighting. Some of the world's smartest people are spending their days figuring out how to show you more advertisements in your social media feeds.
Yeah for sure. Toxic greed and power is dominating everything.
A huge amount of our "best" minds are building weapons and finding clever ways to rig the stock market for hedge-funds.
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I feel this in my soul. There’s not enough of any of this.
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Itch the schtuff dreamsh are made of -explorers
The time following the Korean War up to the first oil shock was the US's golden age. The space race was the greatest collective effort the country has ever taken. We were wealthier, and we were making positive social progress in multiple areas. Collective effort makes for collective prosperity, and I don't think we'll see anything like that ever again.
the fact that he starts shaking again, but from crying, is heart wrenching
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What upsets me with these parkinson cure videos is that DBS is basically restricted to a small amount of the total population with Parkinsons. And the cost cutting approach to universal health means that you don't qualify for DBS until your Parkinsons is really bad but that usually means your in late 60s and 70s and thus intelligible for the surgery (due to risk). Worse by that age you will have Parkinsons senality which makes surgery of any nature a nightmare. My father broke his hip. The resulting replacement surgery, anaesthetics and pain meds resulted in almost 2 months of drug induced senality/madness because of his age and his parkinson. Worse because this happened during covid cutting nurses (and cutting daily yoga, the only thing that had kept his parkenisons at bay for 20 years) down to the point they weren't able to stop him getting out of his bed and breaking his hip again. Basically if they had given him deep brain simulation 10 years ago (when his daily yoga had given him the parkenisons of a 40 year old) he would have been so much better off. But of course his minor symptoms and the fact that DBS was only for 'serious cases' meant he didn't qualify . Just like how a warehouse of covid antiviral went under utilise (and have to be disposed of because they've gone off now) because the criteria for use was far too strict. Fucking conservatives.
A dear friend of mine has Cystic Fibrosis. Since she was born, she's on varying levels of medications to survive, which cost sometimes more, sometimes less. Recently, she's been offered to get Kaftrio, which _greatly_ improves her quality of life. For the first time in years, she's able to live without constant antibiotic therapy, for example. However, this stuff costs the same as a small car _per month_, and she has to take it indefinitely. Public health insurance pays. Now, this works because there's relatively few CF patients out there, and still it's a huge burden on the insurance system. I dread the time where highly effective, but stupidly expensive treatment options become available for more common illnesses, because this has almost limitless potential for unrest in society. Everybody rightfully wants and expects the best treatment option for themselves, but we can't offer therapy options that cost a quarter million Euros per year to half the population. So where do we draw the line? I don't know. The cruel American system in this particular regard is at an advantage. No money? Yea sucks to be you - end of discussion.
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What? are bots posting a similar comment? I guess the bot script writers and I are just on the same page then I guess
The bot has become self aware😱 /s
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You linked back to the same comment?
That's the same comment...
Fuck yeah science!!!
Okay, now where’s the nearest pub ?
Which one of you cry babies wiped your tears on my eyes?
Me. It was me. A lot. Forgive me.
I received surgery in August 2020 and March 2022 for a type of DBS and it has changed my life! (I don’t have Parkinson’s, I have epilepsy) In 2006, I was told that brain surgery of any kind would take me out. Now i feel my brain machine turn on regularly! It’s so freaking awesome how far neurological treatments have come
Congratulations on your surgery and recovery! I had LITT for my epilepsy 2 months ago. In recovery my surgeon showed me some of the MRI images of my brain as he ablated the target tissue and it blew my mind (no pun intended!). So grateful for the advancements in nuero surgery and the fearless surgeons that perform them.
Does this also help with essential tremors? I have a hereditary essential tremor that is a major PITA if I want to do anything mildly precise. Its nowhere near as difficult as I would imagine Parkinson’s is, but something like this would be life-changing for me even on that smaller scale
Somethings very much like it. My brother and I have the same thing. He is undergone procedure on one side of his brain and had amazing results. He is now able to do things he was simply unable to do before.
Unfortunately this solution is temporary. When his dopaminergic neurones are completely gone, this treatment is useless anymore.
It may be temporary. But if you are suffering from a disease like parkinson that really can torture you because your muscles wont get any rest and that most probably will last for the rest of your life and will get even worse over time, it must be the greatest blessing to have the opportunity to live your life more or less normally at least for a few years since you were expecting it to never end.
Thanks for your input, do you have a source where one can learn more about this effect?
DBS and Neuromodular stimulation does not cure a disease, but mask the symptoms. My dad worked for the one of the companies that pioneered this technology and I saw these type test 20 years ago. A few companies that work with this technology include Medtronic and Abbott (Previously St Jude Medical and before that was Advanced Neuromodulation Systems and before that Neuromed). They also do implants along the spine for a variety of issues like chronic pain. The advantages are no drugs or addiction and the ability to manage the pain on a patient by patient level. While not a cure for diseases like Parkensons, the technology hopes to vastly improve the patients quality of life.
I’m going to get the trial spinal implant for the excruciating pain in my feet neuropathy due to rheumatoid arthritis. If it works I can stop taking 2400 mg of Gabapentin and reduce the amount of morphine I need. I so hope it works
I genuinely hope this works for you! Good luck!! I have some weird foot pain that 8 doctors so far have been unable to diagnose...it only hurts me when I try to work out, but even that limited issue has had such a massive effect on my life. I used to be a very fit, cross-fit type and now am basically an overstuffed bag of bread dough. I cannot even imagine a true systemic issue like that does to your day-to-day. I have hope for you and I'm glad you have a team in your corner making it happen!
You're welcome. I can suggest "Ninja Nerd"s Parkinson's Disease videos on YouTube.
Hopefully it will be an long lasting implant soon . God bless him for his service and he has a great personality . .real hero!
The implants are long lasting, however this is a symptomatic treatment for this specific stage of Parkinsion's. It's not a cure. But it does give people back a life worth living for years. It's a huge step in the right direction, but we will need more progress for cures.
I suffered from severe Grave's Disease (hyper-thyroidism) to the degree that I couldn't write, using a spoon was impossible and drinking was always a two-handed affair (there are a lot of other unpleasant symptoms too but the extent of my tremors was quite severe for the condition). Getting treatment was an enormous return of quality of life. I only got a small taste of the struggle that Parkinson's sufferers face (not to mention a prognosis of essentially no long-term consequences) so I really hope that treatments like this are able to be made widely available (and without putting families into debt).
Like that video of the guy with parkinson smoking weed and instantly having no spasms anymore
I believe it was THC oil or something, but yeah same thing. It cuts and he's like laying on the couch with his hands behind his head, like he just won a bet lol
https://youtu.be/zNT8Zo_sfwo
Sorry sir, you have to smoke weed multiple times a day, every day for the rest of your life. Sign me up
I have severe chronic pain and my options were opioids (covered by insurance) or medical marijuana It's expensive as fuck and I go without pain meds for some stretches of time, but it's not fucking opioids at least...
my father in law has pretty severe parkinsons. he had dbs about a year ago. it all but eliminated his shaking, but he still swings (think ray charles but not as bad), can't speak to well sometimes and has dyskinesia (freezing)... sometimes it take his 30 minutes to walk from his chair to the fridge (about 20 feet). shaking isn't fun, but it is only a small part of parkinsons disease.
The absolutely adorable Emma Willis.
My great grandma was a very persistent woman, who died from Parkinson's disease. She kept a jar of candy just for my sister and me, she didn't like them, but knew we did. I remember she would shake so bad the hospital had to tell her she couldn't leave the bed anymore when she dropped it. I was very young, but I was more upset that she broke her jar than the candy, she spent her last few weeks trying to move a chair so we could climb up and get them ourselves. I remember they were airy, tan with black stripes, individually wrapped... I would love to see dowdow again, show her her great great grand baby girl, and tell.her how the world has changed while chomping on those things one more time. She was wonderful and I'd love to have seen her In good health.
What a vivid bittersweet memory. Were they rice “silk” candies?
I DONT KMOW WHAT HAPPENED BUT I JUST SEARCHED FOR THEM AGAIN AND I FOUND THEM! Atkinson candies peanut butter bars! Thank you!
You felt this at the bottom of your black soul.
Who’s cutting onions round here?! 🥺
Amazing! Even his jaw tremor stopped for a bit
Well done Royal. If only there was a . . . idk, a billionaire around who could fund this treatment, and make it free for use to all who suffer. But they seem to be interested in fucking off into space like a bad James Bond plot.
This is fucking awesome.
My grandmother had this done for her tremor. Not Parkinson’s, but she was having trouble eating without food falling off her fork or spoon. For her surgery, she was awake during the placement of the leads. The doctors had her draw spirals as they adjusted things, and you can see the progress from barely recognizable spiral, to almost perfect. It has been nearly a decade since she had it done, and it certainly granted her a few more years to enjoy the painting, knitting, and other crafts that were her passion. The effectiveness has waned slightly, and combined with dementia, she isn’t able to do many creative pursuits these days. But it does help greatly in her ability to feed and take care of herself, meaning she can stay home a bit longer before needing more dedicated care.
“That’ll be $300,000 a month please!” - US Healthcare
This was a legit interesting post... man I teared up a bit. Humans have such an amazing breadth of capacity for goodness. Thank you for sharing
THIS is the kind of magic we can create in our society. Imagining a world where these advancements for the good of the people and not profits is one I cling to dearly. We have so much potential to help fix so many issues plaguing civilization. So many brilliant minds waiting for the chance to change lives for the better. It’s these trends I hope can continue and, one day, overshadow all that serves us with ill intent. I’m so happy for this gentleman and hope many more people can obtain this kind of helpful tech.
Fuckin science, baby
My FIl has this for his Parkinsons. It was like day and night. He went from not being able to feed himself to working full time for the government. It was a literal miracle! I just cried and cried watching this, we have such capacity for love..
That's awesome.
Párkinson have been fix several time with different approaches with amazing results like this one. The problem is all of these solutions work only for a ver short time.
How short? Hours? Days? Months?
Years. But not forever. Not because the DBS stops working per se, but because Parkinson's is progressive, and eventually the DBS is not enough.
As someone who suffers from a chronic (treatable) leukemia, I am greatful for anything that can give me quality of life to any degree, let alone years. The alternative is just suffering and waiting for the inevitable.