If any of you are on reddit, you will know what this title means. So this was my recent contribution, with some pretty interesting feedback from people. At least I didn’t go down in a burning heap….good to hear stories from others around the world. And the more awareness there is out there the better I say (which was the entire point of doing it/this blog).
As this was reddit the language and comments can be in stronger language than I would otherwise write. You’ve been warned 🙂
submitted 7 days ago* by Shakingaj
So brain surgery while awake, very high thanks to the anesthetist, but awake nonetheless, was at the end of my very rough 2012. On Feb 11 I go back in to get the wires in my head connected to the pulse generator they will implant in my chest. I will literally have a battery powered brain.
EDIT: its close to midnight now here so I’m going to try sleep, will answer any questions later.
all 175 comments
Parkinson’s researcher here. Have you been genotyped to determine if you have any gene mutations that are known to increase risk for PD? Have you considered enrolling in gene therapy trials? I know in the UK this is advancing but I haven’t looked at NZ.
I did but my cynical lawyer side took over and said no. Rationale, until treatment is available there’s little point in knowing. And my main reason is anti-selection. Not so much me but my kids. Insurers try anything to weasel out of contracts, and if there is a test floating around saying I’m x and y kids are x and they answered y on an insurance application…well they are toast. Believe me, as an insurance law specialist this is a possibility and therefore not a risk I’m prepared to take on behalf of my kids and their kids.
Since you’re a researcher…
My great grandfather on my mother’s side had Parkinson’s and died of it, and my great grandmother (same side) died with a bad heart and terrible Alzeimer’s. My uncle (mother’s side) has Crones disease. On my father’s side of the family is mostly just back issues and cancer and heart problems.
So how at risk am I in this situation?
…am I going to die a horrible horrible death at age 25 or something? I already had a tumor that grew out from under my toenail from my bone and they had to open my toenail like a flap door and drill a hole straight down into it to remove it. Needless to say my nail bed is fucked up now and toenail will never be the same. I had to have some additional reconstructive surgery done on it recently in fact. Just been trying to man-up through it.
Environment still plays a significant role. Lead a healthy lifestyle, and you will reduce your chances of many of these diseases. All the problems you have mentioned are linked to environmental factors, like diet, exercise, and stress. Genetics plays a role. But it’s sort of like a tall person being at higher risk of bumping their head; if they take more care they might actually bump their head less than a small person.
Don’t smoke, drink heavily, eat a diet mainly consisting of vegetables, and most importantly, don’t worry.
Actually, interestingly enough, smokers obviously have an increased risk in acquiring numerous cancers, such as lung, throat, etc, but actually have a decreased risk in acquiring PD. Makes for a very confusing set of circumstances.
That’s true. Although, you have a higher chance of dying young, and avoiding those diseases. Maybe those with the genes which predispose them to those diseases also predispose them to smoking related diseases, and die before they present with Alzeihmers or Parkinsons. We don’t really know whether it is just a correlation or causation, yet.
It’s a phenomenon that’s not the case in AD though, so your assumption isn’t exactly true. And many of the people that present with PD have onset ages similar to those with cancer diagnoses, so it’s not merely a case of people living longer in the case of PD.
Nicotine does a good job of sensitizing areas of the brain affected by PD, such as those governing reward and movement.
I smoked and drank coffee like water. Didn’t do me any fucking good
“eat a diet mainly consisting of vegetables”
That’s where I suck on that list 🙁
My diet is like…meat, meat, more meat, meat again, more meat…I’m trying to get some more veggies and fruits into it though.
did you see hbo’s alzheimer’s project
I’m in a slightly similar situation in regards to my mom’s dad’s mom has Parkinson’s and his dad died of early onset Alzeimer’s. No one else in my family has displayed any signs of these diseases, so you might be okay if you take proper care of yourself!
My dad has Parkinson. He used to shake very much, making him drop weight and making his day-to-day life really difficult. Understandably he was in quite a sulle mood all the time. He tried out a lot of the regular medicine but none of them really worked out.
Then, he had the DBS-surgery done. I visited him in the hospital the day after expecting him to be really worn out. Turns out, the DBS worked wonders. He was already up and about, telling stories and laughing. He was his old self again!
He still shakes a little bit, but the change is remarkable! I hope everything works out as good for you too OP!
Scienceeee… fuck ya!
Exact same thing with my dad. He was diagnosed at forty had the surgery around fifty, and today turned 72. No shakes, just has trouble walking so uses a cane. Hes really overweight though, and I think that has a lot to do with his walking.
How was it to be awake while they were operating on your brain? I know that they dope you up really good but what kind of things do you remember feeling/seeing/hearing? I used to work with anesthesiologists but they never did these type of procedures and I’m always curious about how a patient feels about these things. I also hope that once they get you all hooked up that you can do the things you want to do!
I’d like to read that answers to these questions.
My dad had this surgery back in 2009, and he said that most things remain a blur.
He said the weirdest feeling was having them work on his brain while he was still awake. My dads surgery lasted for 13 hours, and they had to repeatedly move electrodes around his brain. They almost had to make it a 2 day surgery since he was topped out for the medicine that they gave him.
The doctors had to keep having him lift his legs, or his arm, or wiggle his toes or his feet so that they could judge how the electrodes were working in his brain.
I was awake, high, and they couldn’t give me to much memory blocker as it stuffs up the electrical signals they need to record.
How does this affect your day to day life.
considerably. I can’t walk without a stick, can’t dress myself let alone my 3yr old daughter, can’t work. Really hoping that when the power is on I will get some control back.
My father was the same way, he got it done years ago, his life got much better and he married the love of his life. But his voice has all but slipped away. They don’t really know why but he talks softer and softer every year.
Also did you ever work around pesticides or on a farm when you where young. He always asks this to other people with the disease.
Speech and language pathologist here. Actually, people getting quieter with Parkinson’s is very common! It’s one of the main features of the disease for us. Look into finding a speech pathologist who is certified in LSVT here
I’ve done LSVT. Very worthwhile. Wife stopped asking me to speak up everytime I said anything. Given communication is key to all relationships, it improved mine markedly. Good call promoting it.
The interesting thing is that the rest of his symptoms seem to have improved.
What were your initial symptoms of the disease?
I went to the GP (family doc in NZ) with a numb right arm, a feeling of disconnect between my hand and my brain (ie I couldn’t keep up in meetings taking notes and as a lawyer you can imagine how well that worked) and numb slightly twitchy fingers. Thought I had a pinched nerve. 6 months later neurologist says, nope its Parkinson’s.
my mom had this same procedure done about 4 years ago. it did help at the time, actually quite a lot. even just having the probes inserted showed some improvement before having the wires connected to the generator thingy. unfortunately it only seemed to slow it down for a few years. she’s also in her late 70s so I’m sure that plays a part. I wish you the best of luck.
hey thanks, I really appreciate your thoughts. I hope to get a few years out of it and my surgeon was confident that the positive after effects of the initial probe placement bodes well for the future. So quietly confident that I’ll be a new man in a few months…
Do you still take medication after the surgery?
at the moment yes, 9 different drugs 5 times a day (5 for motor symptoms, others for depression/cognition etc). And an apomorphine (no not the good painkiller but an anti parkinsons med via constant infusion thru a pump (much like a diabetic). Pretty sure you can get Apo in the USA but only as a one off injection, not the infusion pump. My gut looks like a smack user on roids as a result of injecting myself every day for 20 months.
positive after effects of the initial probe placement bodes well for the future
Ooh, are you getting positive after effects already, before the second surgery?
yup I had 6 glorious pain free weeks….then it was back to pre-surgery pain, jitters, tremours, dystonia and dyskenesia. Shithouse in other words.
Was there any cause to this? Not trying to be rude, but is there anything the rest of us should do? Or do differently?
No one has yet discovered the cause of the disease for most people. I think the latest research talks about cell degeneration at a molecular level as a result of certain proteins misfiring as the cell divides but 95% of people have idiopathic Parkinson’s i.e. no known cause. Sometimes genetic (particular DNA) or environmental factors play a role. In most cases though it just come on, and by the time you show symptoms you’ve already lost 80% of the brains ability to produce dopamine (one of the key neuro transmitters). I had no family history and didn’t grow up in an orchard using pesticides (as has been the cause of Parkinson’s in some). So the answer is no, there’s not a shitload anyone can do to prevent it.
This is really interesting (and tragic). I remember reading Michael J. Fox’s first book (I’m going to insensitively presume you have read it) where he says that a majority of people who he worked with on a TV show in Canada (when he was starting out) got PD. He said it might have been something to do with the atmospheric conditions in the studio, but nothing conclusive had been proven.
It was a large number of people working in a building. But when you crunch the numbers, it turns out that the odds were not that extreme. There were four people who worked in that building who developed parkinsons, which is not that unlikely in a city of millions.
PD researcher here. The problem seems to arise from the misfolding of many proteins (a-synuclein being the primary component in the aggregates known as Lewy Bodies) in particular neurons that are susceptible to stress and eventually death due to this stress. There’s is a lot of research and modeling on whether our cell’s ability to degrade this protein is compromised in these cells, and a number of association studies in humans and cellular and animal models seem to implicate these pathways, but as you said, at this time, there is no effective therapy to slow down the advance of pathology on the brain. Good luck to you, and I hope that the surgery will improve your daily living.
There’s a fruit that grows in Central America called “guanábana” or “soursop”. The taste is a mix between bananas and strawberries, and it has a completely unique texture. It’s the absolute best fruit I’ve ever had in my life, and when I was in Costa Rica I had guanábana slices, guanábana smoothies, guanábana juice, guanábana everything. Every single day for two weeks, probably ~five types of guanábana preparations.
The reason it’s not popular in North America/Europe, etc, is that it has annonacin in it, which is a chemical found to sometimes cause brain lesions similar to some symptoms of Parkinson’s. The problem for me is the stuff is like crack. It’s incredibly good, the absolute best food product of nature in my opinion. If I ever spend more than a month in a Central American country, I’m doomed to join you.
I joke with my brother (who also shares a similar opinion of guanábana) that it’s evidence of no god. For a god to make consumption of the best tasting fruit in the world result in physical conditions similar to what’s caused by Parkinson’s is enough for me to say “haha, that’s too cruel to believe!”
I know this was hardly on any sort of topic, but I can’t help but discuss guanábana every time a chance presents itself. The stuff is too damn good.
Are the people who eat a lot of it in their diet known to have higher incidence of neurodegenerative disease?
No clue! All I know is a saw a lot of people, young and old, drinking guanábana juice. Maybe the juice is processed in a way that removes annonacin.
Just found this:
Now I’m grateful I saw my sister eating one of those things as a kid and it had a worm in it, so I’ve been too grossed out to ever touch them.
One thing to point out is that, just because you’ve never knowingly been exposed to some toxic chemical doesn’t mean you haven’t been exposed. People use illegal shit all the time, many chemicals persist in the environment, etc. Most Americans have detectable levels of pesticides that were banned 30 years ago. Two towns over from me there was a scandal when they found some farmer was using illegal pesticides, and levels at 300 times the legal limit were found near a playground.
But you’re right that there’s not much one can do about these things.
There is no known cause of Parkinson’s. I believe there are some genetic mutations for some people – particularly Askenazi Jews, if I recall correctly? Also there is some cause to believe that if you were exposed to Agent Orange that this may play a part in developing PD. But there is no convincing evidence (at this time) that PD is hereditary or can be caused by the environment – though there are obviously a multitude of studies investigating those topics. Basically, there’s nothing you can do to prevent it.
PD researcher here, we actually know that some families (albeit very small ones) harbor particular mutations in what are called the PARK family of genes that are highly penetrant between parents and their offspring. These tend to be families where PD is early-onset in the cases, which is what it seems like OP is. Askenazi Jews have genetic mutations that lead to multiple different neurodegenerative diseases, such as AD, PD, FTLD, etc. And to your last point, while it hasn’t been observed that environmental factors can cause PD, they do pose increased or decreased risk, depending on what we’re talking about, from pesticide exposure to caffeine drinking and smoking.
Thanks! This is really interesting.
The Iowa Kindred some call them. North-east Iowa is also a hotzone for Parkinson’s for some reason. Some bad mix of German-Scandinavian genes, and crop pesticides/fertilizers getting into the water supply.
Before they had a name for the group, and the disease, some families just wrote it off as “shell-shock” from one of various wars. Or I suppose you could think it was from too much drinking(a common thing in rural Iowa even today). These days probably a lot of doctors are just blowing it off as drugs related.
If you have an extended family who have been diagnosed, I suppose that makes it easier for the neuros, who normally botch the first diagnosis about 75% of the time. 😉
I used to work for the company that makes your brain implant. I should get back to work.
Don’t give up man. Just keep at it with your medicine. My father was diagnosed with Parkinson’s in ’06 when he was only 42. His symptoms were terrible (only in his right hand) but since he’s been eating healthier and exercising it hasn’t gotten worse!
I hope you’re dealing with it well!
well you can sit in a corner and feel sorry for yourself or you can get over it and get on with living as best you can. no point crying over something you can’t change, and I have young kids to raise as best I can. Sure I have my pity parties but you just have to get up every day and somehow face the trials ahead. Not easy but the alternative is pretty shitty right?
How did it feel getting the DBS while awake? Hope it all goes well in Feb!
“I could feel my skull splintering when they drilled through, it was a strange sensation, but I wasn’t in any pain”
pretty cool actually. see post reply above (which I re-posted from my blog). lazy yes, but sore hands and limited typing movement means best I can do tonight sorry
What side effects have you experienced? Are any of them positive? Is the treatment effective?
It was great, wears off after initial probe placement and then once battery pack implant goes in hoping for a great deal more function
My father was diagnosed with Parkinsons when he was about 35. I was about 12, I feel that growing up watching his disease progress defined much of my life, forever changing who I am . Much later when he started to exhibit other symptoms his diagnoses was changed to the Lewy Bodies disease. His illness never changed who he was to me, the strongest, smartest man in my life. Know that this disease can take a lot from you, and I’m sure it must feel like it is slowly taking everything, but to the people that love you, you will always be the exact same person you were before the diagnoses.
My dad was diagnosed with young onset PD at 40 (ca. 1995) he didn’t have DBS until 2011. PD is an extremely difficult disease and there are many aspects that I find people do not talk about or are not aware of. It’s not just about motor symptoms. As the disease progresses, there are more cognitive defects that become apparent. Basically, my dad doesn’t have a sense of right or wrong, doesn’t comprehend logic/reason, gets very emotional very easily, and he has paranoid delusions. His personality completely changed. This is all in addition to motor and speech deficits. It is extremely important to find good doctors, to trust them and follow the treatment plan.
Psychosis from medication is pretty common. Something like 30%.
I’ve found the onset and decline of medication is something like how they describe bi-polar disorder. 30-90 minutes of mania at onset, crushing depression before going to sleep sometimes. Do this every day, and yeah, you’ll get nutty.
Cannot imagine having to deal with kids, a spouse, and all that while dealing with the disease. If you’re crazy just from that, having relatives dogpile on you and try to “help”, that would be too much.
Yeah, nothing like having people poke you daily and try to find out if you’re demented or crazy yet.
I’ve seen plenty of people on various parkinson’s forums crying a river over having to “deal with” a relative that had parkinson’s. I’m always like, WTF is wrong with these people ? If someone doesn’t want to help someone with the disease, get out of their life, they’ve got enough to deal with without having people dragging drama into what’s left of their life.
If I ever dared to “help” my dad with his disease I don’t think that would go over well, haha. He is a one stubborn man with a quick temper. I’m the only one in my family that still has any kind of a relationship with him, unfortunately. He feels lonely and abandoned, but has cut everyone else out of his life.
Yeah, the condition surely puts you in a rotten mood a lot of the time. One of the earlier MAO-B inhibitors would convert into l-methamphetamine and make people progressively more nuts. Various acetylcholine inhibitors cause dry mouth, dizziness, hallucinations, etc. Then add in the dopamine factor. Ever quit smoking, dope, booze ? It’s that sort of fun, with the flip side of a manic and paranoia as the dopamine is converting when you take another pill.
Generally dealing with symptoms is bad, dealing with people wringing their hands because you have little to no facial expression, move around all stiff, and get crabby a lot, that amounts to a lot of BS well over the tolerance limit for many people.
Another fun bit is, the ones who don’t cut and run the instant they find out you have an incurable disease tend to be really really annoying people. So if you were part of AA/NA before the parkinson’s hit, those people will still be around. lol.
For me though, the most “quality” kick in the balls was a day I went to the mall and figured I didn’t need much medication. I was walking along and about to go into the mall when this old guy, like 70-80s with a cane opens a door for me. I was like 37 at the time, and must have looked handycrippled enough that he figured I needed help. It’s little things like that that will make you crazy in short order. lol.
What is your long term prognosis? Are you able to continue working as a lawyer for now?
No I “retired” 18 months ago. Not so much because of physical side of it but the lesser (publically) known non movement symptoms – cognitive dysfunction/fatigue etc
My mother (65 y.o.) is going in to have this done on February 8th. Any advice you could give to the both of us? What was the recovery time like for you? She’s somewhat nervous about the fact that she has to be off her meds and awake for the surgery. Was it as nerve-wracking as she thinks it’s going to be?
Probably the worst nerve wracking part would be having family lurk over them like a pack of vultures. 😉
Worst horror story I heard was from my mother who had a minor stroke while getting a thalotomy. The hospital fudged the paperwork to cover it up, and cover someone ass. Way to go Uni of Wash. 😉
She’s doing well these days though, the stroke was only a minor setback.
one of the first people I ever met at my first parkinson’s support group had had a stroke when going thru dbs and was a vegetable being fed by spoon by a carer. Gave me the shits for months…not a good start to going public…I was reliably informed she was the exception by far not the rule!
If people in your family are prone to high blood pressure and strokes, it’s definitely something to think over hard. If you do decided after that in spite of the risks, make sure you have a living will and have a “do not revive” section if you don’t want to live as a potted plant. 😉
Basically go in with a positive attitude and trust your docs. I was so fraking high I didn’t notice being off my meds and I was fine (age maybe helped though). But I went in on Tuesday avo, surgery started 7.30am Wednesday and I walked out of the hospital on the Friday morning just before noon. If they are doing it all in one (ie power pack implant in same surgery) it maybe longer. I expect I’ll be in longer this time to get over the general anesthetic and pain of having a tunnel made from my skull to chest.
Thank you! She is just having the right side done on this first visit. They’ll be putting the unit in her chest later. She may have to go back and have the left side done as well depending on how much the first one helps. I read the blog you posted here and I’m going to have her read it. I think reading someone else’s experience will help her a lot. Thank you for posting this and good luck on your recovery!
I had the same surgery done two years ago as part of a clinical trial for depression. I had the complete surgery done all at once. I also was awake for part of the surgery, which was really kind of scary. Good luck to you.
I’ve read that DBS for severe depression is promising. Can you report how it has worked for you? Thanks.
It has completely changed me. I have finally gotten out of 25+ years of depression.
I have been on 17 different medications, seen several different therapists and psychiatrists, and had about 20 ECT treatments. The ECT did give me about two weeks of relief, but because of strange complications (my first psychiatrist moved, my next psychiatrist was diagnosed with leukemia, couldn’t find a new doc, and my doc didn’t know that much about ECT) I quickly fell into depression again.
During my chaos trying to find a doctor, I had searched online for clinical trials. I was desperate. I was willing to try anything. I received a phone call from a university trial coordinator at some point. I had forgotten that I had submitted an email because of the ECT.
It turned out I qualified for the trial. I had scored 39 on the depression rating scale they used. At 20 a person is considered depressed.
The surgery is a lot simpler than you would think, considering it is brain surgery. It took most of a day, and for part of it I needed to be awake for testing. My surgeon is considered an expert on this surgery, having performed it over 700 times.
After a couple months of recovery, I started the trial. It was great. I didn’t go from depressed to happy in a day or anything, but the difference was obvious to me. I finally didn’t go to bed every evening wishing I would die. I stopped thinking about how I was feeling, because I wasn’t so unhappy. I just lived each day as a “normal” person, and I am so glad to say that I still am. I have now stopped worrying that I will fall back into depression.
I still see a doctor every couple of months and take the depression rating test ( which I now usually get a 2 or 3 on, compared to 39 before!) and have the devices checked to make sure the batteries are okay and they are working properly. I will soon be having surgery to have my devices replaced with ones that have rechargeable batteries.
Everything has gone so well, and I can’t believe how lucky I am to have been included in the trial. There are some complications with the device manufacturer not wanting to continue the trial, but the university has agreed to continue to provide me and the few others in the trial with care as long as we still have our devices in. I would guess that I have received at least $500,000 in medical care so far.
My husband and son really noticed the difference in me. My son found it hard to get used to a mom that isn’t grumpy and moody all the time. My husband one day said to me “do you realize that you are completely better now?”. Of course I do!
I try not to dwell on all the years of misery I had. It’s really hard to realize that I don’t have any happy memories from before. Luckily, I had a great therapist to help me to see things differently.
If you have any questions I would be happy to answer them for you. There are a ton of things I left out, but don’t want to bore you. It’s amazing to me how everyone who has had/has depression has such a story to tell. I guess everyone does.
My SO has his degree in neuroscience (working toward MD now) and is currently doing clinical research on Parkinson’s. I hear about the mechanics behind Parkinson’s along with current and future treatment options all the time. I really hope you get better. 🙂
Thanks, we need people like your SO to find a cure from this cruel illness. So best of luck to him and his studies.
My grandfather has had Parkinson’s for quite some time, I believe he was diagnosed perhaps 12-15 or more years ago, and he is still operating a Texas cattle farm. (albeit from his motorozed wheelchair now) He certainly has to have some help, but I just wanted to let you know, don’t give up what you love, keep pushing, it’ll keep you going. I wish you the best of luck, and I hope that the surgery helps you out. 🙂
thanks, my 96 year old great aunt reminded me to never give anything before I absolutely had to so I try and live by that
My grandma had this surgery roughly a year ago. She is doing alot better, i hope you have a good recovery.
When I was in college I shadowed a neurosurgeon who does DBS pacemaker implants. Amazing machines, super effective, and absolutely wonderful to see his patient’s quality of life increase greatly. Definitely a big part of why I’m going to medical school.
Anyways, good luck to you, and I hope your DBS allows you to get back to doing your daily duties.
cheers, my daily duties as house bitch and dad to a 3 and 5 yr old keep me on my toes
Have you tried anything prior to surgery?
9 different drugs at the moment plus an apomorphine constant infusion pump. DBS surgery only actually works as a treatment option for some patients and some symptoms. Its not a cure, it doesn’t slow the progression of the disease, it just replaces the drugs (hopefully all) and subsequent side effects. I was lucky enough to be selected as a suitable candidate given my particular grab bag of symptoms.
My uncle is 51 and had the same surgery performed about 2 years ago. He has had Parkinson’s since about 15 years ago. I can tell you it DRAMATICALLY improved his condition. Before he couldn’t walk, could hardly talk, and had difficulty breathing. Now he does all of that on his own just fine. Best of luck!
What age did you start noticing symptoms/what were they? Did you have a family history?
about 35. numb fingers and hand, feeling of disconnect between brain and fingers, some tremor. No family history. Knowing what I know now I started showing symptoms about 5 years prior to then, but they were not known by me to be PD symptoms i.e treatment resistant depression, no sense of smell, fatigue, shoulder and neck pain.
Wishing you success in your surgery and recovery!!
My grandfather had Parkinsons; I’ve seen the damage it can do. Just writing to wish you a swift and complete recovery. All the best!
My grandfather had Parkinsons..thankfully for him, it only really began affecting his life around age 62. Have you met others with the disease, and has it helped you cope with what will happen to you in the future?
62 is still pretty darn young. Think about it, you’ll spend all of your retirement with it.
many many people. Yeah I actually have spoken to a few conferences about my attitude to life and the future. You just gotta keep smiling and take what the universe deals out as your hand of cards. But just because you can’t change those cards doesn’t mean you can’t change the way you feel about them.
I used to work at a non-profit for Parkinson’s Disease and my grandfather was diagnosed with PD very late in his life. You’re so young and you haven’t had the disease long…what made you want to undergo such a serious procedure so early?
Best of luck to you, I hope they find a cure (or at least a cause) soon.
because I have PD on roids. Its supposed to be slow and progressive, but I got the super fast version. Diagnosis to DBS in less than 4 years. Essentially meds have stopped working and I’m crippled. Video here FYI:
How fast did symptoms progress, and when did you first start noticing problems?
edit: I ask this because I am 35 and just started seeing doctor for Parkinson like symptoms
Congrats on the successful surgery and I hope your next one goes just as well! It might be too personal but I was wondering if you could tell me how having PD has been for you and how your family has been dealing with it.
I only ask because my boyfriend’s father passed away from PD and my boyfriend never really got too specific about it and I’d like to be able to talk to him more about it in the future.
its really hard on my wife and kids, I wrote this recently to explain it:
My dad had this done years ago (he’s 76 now) and it was a tremendous help. It enabled him to take a lot less medication. We still tease him that Mom could take his remote and “turn him off” if she gets annoyed with him. 🙂 He just recently had a new battery put in.
Best of luck to you!
I actually conduct Neuropsychological testing pre-operatively for DBS candidates at a University hospital. Im always curious about the surgery process from the patient perspective. I know they do intraoperative testing. what kind of testing/questions were asked of you during the surgery and how was that experience? Edit: I suck at typing on my phone.
My grandma her was one of the first people to have this surgery done. Because it was still so new, they did it for free. She didn’t pay a penny, and didn’t have insurance. She was also on the front Page of the sun-Sentinel here in South Florida.
Well, in the end she said she needed a stronger voltage, because the battery wasnt turning off her shakes, since they had gotten worse. Bad idea grandma. Since it was a little bit stronger, every time she turned it on, she would get physically sick. She decided she would rather live with the shakes, and never turned it back on.
That was her right side. Now her left side started shaking, and she said she wouldn’t want the surgery again.
Hope you have better luck.
Also, here’s my auestion: did they give you a block to bite down on when drilling into your skull? Cause that’s what they gave my grandma…
Have you heard of tongue stimulation as a version of this? UW-Madison has a research group who works on this:
I know the woman featured on their website named Jeri Lake. She had a traumatic brain injury that majorly disabled her. After a few months of this therapy, she was CURED. I mean miraculous level. I’m a scientist so not easily so swept up, but I was blown away with the results. It has also helped several people with MS (Montel Williams, famously).
They have a project to use this for Parkinson’s as well.
Edit:stray sentence fragment
Any questions I had have been asked already. I just want to say that I am sending some positive thoughts/energy/prayers your way. Good luck and thank you for taking the time to do this AMA, I had never heard of this procedure.
Would you perhaps do another AMA after February 11th? My grandfather has Parkinson’s and is considering DBS. I wish you the best of luck.
Do you have REM behavior disorder?
just the nightmares. and the outloud swearing telling imaginary people to f*** off. wife loves it. yeah right.
Is there any “side effects”? Are your dreams different? Do you sleep less? Do you have hallucinations that you didn’t before? Does food taste different?
My grandfather has Parkinson’s. I see firsthand what it does. I just came here to say good luck with your battle, my friend. Stay strong.
Congrats on the surgery I hope it improves your life. My mom has Parkinson is about to turn 70,how much did it cost and how do I contact doctors that perform this surgeries? Any piece of information will be greatly appreciated. Praise science!!
I live in NZ. We have a public health sytem which while not perfect, is good. I pay nothing for what is about and NZ $100k op. Its not done privately here, and they do about 12 ops a year only. I gio lucky.
For people interested in what the Deep Brain Stimulation surgery is like, here is an online simulation. Seriously cool. http://www.edheads.org/activities/brain_stimulation/
Also, thanks for sharing your story with the internet. I’m a speech therapist working with adults. I often work with people who have Parkinson’s (a lot of LSVT). Have you had any speech or swallowing symptoms? If so, what, if anything helped?
Hope you recover speedily!
Yeah, have heard good things about it, but personally, I don’t think I’d every want to do it. I’d be thinking “death by misadventure” if something like a gamma knife couldn’t be done to keep me from getting to stage 3-4. Luckily my progression is still slow, been in stage 1 for about a decade. And generally, others in the family with it have died from heart disease, accidents, or other mayhem before they hit their late 60s before they got too bad with with it.
Relevant to me, have you had a slight essential tremor most of your life?
I just want to say thank you for doing this…. my grandfather had parkinsons and passed away 20 years ago. Just found out my Dad has the marker for it as well… it’s encouraging to hear about this surgery and all of the progress that has been made since my grandfather passed. I wish you all the best – and please keep us posted after your Feb 11 procedure!
TEDx talk – Minding Your Mitochondria
The Wahls Protocol would likely benefit those with Parkinson’s disease, mild cognitive impairment, or mood problems.
Dr. Wahls was totally laid up due to MS, and changed her diet, and now can walk again.
My dad has been diagnosed with Parkinson’s for over 5 years now and has gotten progressively worse over the past few. I haven’t personally done much research on DBS surgery because I do not like researching Parkinson’s in too much detail as you may understand. So now down to my questions, why did you decide to have it? Did research back up your decision? Have you spoken to many other people who have been through it? Was the surgery paid for by insurance/NHS (if you are from the UK)? Cheers for taking the time to do an AMA and I hope it all works out for you.
enjoy eating levadopa like candy.
side effects though are shit house. I have bad dyskenesia (writhing) which is in part a drug side effect but alos part of the profile of early onset Parkinson’s.
how does it fell if you dont take your medication and freeze up. [ question about parkinsons disease not the operation]
like i am wearing a concrete suit
Wow, thank you.
yeah it isn’t pretty. some days my wife has top dress me because I can’t lift my leg to put it into underwear/trousers.
Wow, I couldn’t imagine not being able to do just an average everyday task like that ( sorry for rubbing it in that was unintentional ) thankyou for answering my questions and giving me an insight into what its like for you, you are now my second favourite person with Parkinson’s just behind Michael j. Fox, ( he set up a foundation to find a cure for the disease and he auctioned off the shoes he wore in Back to The Future and donated all the money to his foundation . ) I don’t know what else to say other than it has been interesting talking to you.
Glad to see that more people are becoming more aware of this disease!
Anyways, my dad has Parkinson’s and has had it since 2001. He had his DBS surgery in 2009, and it’s done wonders for him. Had he not had it, he would be wheelchair bound with the need of assistance for just about everything. 3.5 years later, and he’s still walking around, although not as well as he could be, but better than he would be without it.
- How long did your surgery take?
- Are there any other steps you plan to take as a preventative measure?
- What do you think of Stem Cell research and how it could help Parkinson’s?
- What kind of support system do you have back at home?
Thanks for doing this AMA and making people more aware of this disease!
6 1/2 hours or so.
Exercise. Exercise. Exercise
If it can help then full speed ahead.
I am lucky to have a wonderful wife and great mates, plus a helpful wider family
I had the opportunity to speak to a PD patient once who also underwent DBS awake. They had an anesthesiologist induce a trance-like state by talking to him. Did they do something similar when you had surgery to distract you from the noises and the headcage?
nah they gave me something my anesthetist said was like date rape drug. I have very clear memories but the whole 6 hour procedure felt like maybe 1-2 tops
My dad actually had it for 1 1/2 years. How bad is it for you? Does your whole body shake or just like a hand? (my dad is only 1 hand that shakes) How has it impacted your daily life? Has it prevented you to do something you would have done without parkinson? Did you have a hard time dealing with it?
yeah it affects me a great deal www.vimeo.com/49073748
check out my blog at www.youngandshaky.com
I wish you all the best on your upcoming implantation of the IPG. You have made it through the difficult part. Placing the probes is a bit scary and there are significant risks.
A good friend of mine is undergoing DBS for severe depression after decades of struggling. It remains experimental but the treatment looks promising. I hope that you find the results and relief you are seeking.
I am an aspiring app developer and I was recently approached by someone who has a brother with Parkinson’s Disease. He said that they had wrote a little web interface for his brother to keep track of his symptoms. He asked me if I would consider developing an app to handle such a thing on a mobile device. I am not familiar with the disease at all and am wondering about a couple things:
- How important is it to keep a record of symptoms? Is this something that is needed?
- User Interface design would obviously be a challenge. How difficult is it for you to use a touch screen device?
I do not have PD, but from what I understand it’s important to keep track of symptoms and when medications are taken so that they can figure out when meds wear off, how long it takes for them to take effect, etc.
Someone please correct me if I’m wrong!
very important. I’m on a strict time frame for meds, doses have to be on time or the wheels fall off pretty quickly
I don’t have PD, my dad does. From my experience, I think this would be a great app! My dad is an anal scientist and kept a composition notebook with him at all times recording: how much and which medication he took, how long he was “on” and when he went “off” and time “off”, side effects / specific symptoms and their severity.
He made little graphs where how “on” or “off” was on the y-axis and time on the x-axis with notations of when he took which med. It was very difficult for anyone else to read, obviously, a touchscreen would have been much more manageable. It might require help from a doctor or family member to input meds and doses. Larger icons would be best.
PD patients respond differently to meds, progression and side effects are also different. Being able to keep track of the symptoms, medication effects, side effects and progression of symptoms would most likely be an invaluable tool for patients and their caregivers.
I’m not sure how much elderly patients would use it, but I’m sure that young onset PD patients would find it very useful. Such an app would probably find use for a variety of other people suffering from diseases that require monitoring, i.e. diabetes.
better than a laptop (i use a tablet alot)
Would you like to meet Larry David? Do you think he would accept a soda from you?
at my worst, he would never take a soda from me 🙂
its interesting how to do a brain surgery you do not need anesthetists because you cant fell pain in your brain