I too had this done about a month before your surgery (two years ago in September 2014) and I kiss the ground my neurosurgeon walks on. My tremor, like yours, disappeared almost immediately after the stimulators were turned on by my neurologist. I watched your surgery and had the same experience during the procedure, where during the probe placement test phase, my shaking stopped completely. I don't remember ever being that relaxed up to that point. I'm so glad your surgery went well and thank you for posting it on RUclips.
I had mine done in 2010. Like you I worship the ground my Dr. walks on. Every year I send him a thank you card . I had it turned off one time for a cat scan. never again. To think I was in the U.S. Air Force for over 20 years in avionics putting up with the ridicule. I am a much stronger person now. The Veterans hospital did mine
Thank you for putting up these videos and contributing to awareness of new treatments and parkinsons disease! It takes a lot of courage to show vulnerability and even more courage to take part in a pioneering treatment like DBS. I am so happy for your amazing progress and wish you the best of luck1
I am having DBS bilateral surgery Dec. 4, 2023 - with pulse generator being put in Dec. 11. I have hope and many prayers are going up that once my system is turned on, programmed for maximum benefits, I will have control of my essential hand tremors and possibly other issues - with minimal side effects. I don't have Parkinson's. Any time I see that DBS helps gives me more hope. I have Spasmodic Dysphonia. It would be a joy to have help with that, but they are targeting the hands. I wouldn't mind a Christmas miracle, but I really just want to be able to do everyday activities normally again. That is one of my prayers this Christmas. Lord willing, it will happen for me. I am so grateful with this man that it has helped him.
I am so glad you had someone there with you. I was scared for you until I heard her voice...only because you hadn't turned the device off for over a year and I wonder how much shock you went into when you felt how drastically different your motor functions were affected. I would have gone into a panic.
I know next to ZERO about Parkinsonism but the B&A video of this therapy proves the inventor deserves a full provision in the Nobel league. To not recognize this achievement would border criminality. . .
Im scheduled for DBS surgery in november. My tremors are unique in that they arent parkinsons based or essential tremors but theyre medication induced. I cant go off of the medications and no other treatment for the tremors has worked so i feel like this is my last option. My doctors dont know 100% if this will work for me because of my tremors being medically induced but i feel like i have no choice. I cant do anything on my own that involves fine motor skills like cutting food or holding a cup of water.
Watching your videos is like watching my father. He is extremely hesitant about any surgery. How long did it take for you to recover after the surgery?
I had DBS surgery the end of July '17. Other than surgery days, I took ONE day off work. I have been runnin' and gunnin' ever since. This is the greatest thing I ever did for myself!
Wow what a great video, thanks for making this. My dad had DBS back in 2010 and although he doesn't have tremors with it on, it doesn't help him with walking as much anymore. He was able to actually run after his second surgery, but now your "off" looks like his "on", with the shuffling and freezing and falling as well. Do you know what your DBS is set at? Do you get the settings adjusted regularly? How are you doing now? Thank you
Looks like STN DBS. Do you still take any medication? Did you manage to stop meds completely after surgery? What meds, and how many doses a day were you taking before DBS?
My surgery was over 11 years ago. I didn't take ANY meds until a year ago when I fell and broke my femur at the hip. I now take carbi/levodopa 25/100 three times daily. It helps my balance. I had the DBS to avoid the side effect of dyskinesia as well as to stop the tremor. My speech is currently terrible. I think that's a deteriorating process of the PD - not a direct result of the DBS because my speech does not improve when I turn the system off.
Cognitive functions are abilities like logical thinking or emotional response. I can see barely anything in that video that would give me an impression of those functions on a higher level. So yes, the question if DBS effects cognitive functions is a widely discussed fear of neurosurgeons and an ethical questions that matters. Luckily the DBS usually does not effect cognitive functions.
find quite helpful. w w w . Actually It IS Brain Surgery. blog spot. com (Type in that web address without the spaces) Thank you for your questions-- I hope I was of some assistance and please let me know how your father is progressing. Kenny
I had DBS for a little over a year and had to turn it off once for an EKG. I was worried but my major symptom of rigidity was not noticible in the short time 5 minutes I had to have it off. I was diagnosed 12 yeas before I resorted to DBS. I think what you did was very brave...and hopefully helpful to those considering the surgery. Although it is not a cure, it is a giver of life back to many people. The biggest thing I like about having DBS is not having to crawl to the bathroom anymore.So very thankful for God's peace about surgery for me. It is a personal decision and I am so glad i made the 'go with it' decision. I think the one thing i would tell people is it is long process requiring patience and good communication with the person adjusting the stimultion.
Hi Diana, Thank you for the comment. Truthfully, I've been a videographer for 25 years and love the adventure. I didn't have to turn it off...just wanted to see what would happen. In addition, we professionally captured the entire surgery in HD video. When the time is right, I plan on editing it for various audience groups. These video clips will provide a chronological record of the process. Please checkout my blog at ActuallyitisBrainSurgery.blogspot.com
I am currently in the process of having DBS for essential tremor (not Parkinson's). I had the first surgery on 5/30/17 and will have the second surgery on 6/13/17. I'm looking forward to the results. I have to say, the experience of the surgery itself was pretty intense, but it will all be worth it if it only fixes part of my tremor. Wish me luck!
I Wish you the very best and hope everything turns out well. My Father will have this surgery in August. It will be for free as he is a volunteer. Which is why i am worried because i feel it wont be as good as when you pay for the surgery. I really hope it goes well
ProWanted, If your dad's a volunteer, I'm assuming he's participating in a study, which would make the team eager for everything to go well. He might get better care. Remember, the surgeons performing this procedure are at the cutting edge of medicine. This is what they've studied their entire lives to get to do. When I entered the operating room, I knew I was being taken care of by a large team of professionals who were dedicated to my getting a good result. Sure you dad will be in good hands. Also remember, this procedure is NOT experimental; I was told it is considered "standard of care." There is at lease a 20-year track record on this procedure. Good luck to your Dad and all of your family!
My father just got DBS surgery in the past twelve months after years of suffering with Parkinson's. I helped get him to the surgery and then home, but I don't exactly live close and it took a month or two before he came over to my house again with the DBS active. Without much of a thought, he said "I'm going to grab some water" and stood up out of my arm chair, walked across the room to the half-flight of stairs, went up to the kitchen and got a glass of water for himself. It was the fastest I had seen him move in over a decade and it nearly brought me to tears! I've been trying to find a way to explain the change, it's so noticeable it's night and day, and this video is a near exact replica of what I see with my father pre-DBS and post-DBS. Thank you for posting this and sharing, I hope this becomes a more common treatment for Parkinson's and continues to be more and more effective as we learn more!
I did this DBS surgery for my hands tremors in 2017.If I could to take time back, I wouldn’t do it. I’m in pain for 2 years & everyday took a lot of painkiller.I talked to them but they don’t want to help me. I really don’t know what to do.
So many thanks for sharing this video.I am an amator engineer and am working on deep brain stimulation.Your videos gave me a reason to move on! now I know how much helpful the development of this science would be! I wish you health :)
Thank you all for your comments. It's been 11 years since my surgery and I had hoped for 10 years tremor free. It's still working. I can't talk very well (actually hardly at all) and my balance is shakey, but my attitude is still good and hopeful for another10 years.
Hi, my name is laiouer brahim and i am from Algeria, thank you very much for your videos about PD my mother is having the same symptoms like you when stimulators are off can you plz estimate the coast of the DBS surgery cauz we are planing do it in france ... wish all the best for you Sir .
First of all, thanks for posting this video. I notice this video was posted 9 years ago. Today is April 30 2022. I wonder how you are doing after 9 years. My wife just had the procedure done yesterday. She is diagnosed with distonía in her lower jaw and can't talk properly or chew food. I hope this will help her improve her life. I want to ask you since I noticed that you also had problem with your speech. Are you able to eat and chew food when it is on? Thank you for any information or advice you can give us. God bless you!
Oscar - Thanks for your comment. I'm so sorry to hear about your wife's distonia. I can eat with minor problems. My tongue doesn't want to comply sometimes but my real challenge is with my speech. I can whisper fine, but have a very difficult time talking loud. It's been 12 and a half years since my surgery and despite the talking and some ongoing balance and freezing issues, I have been very happy with the relief that DBS has brought into my life. Hang in there, my friend. DBS is good.
@@kenmiller9047 You look so good! I don't have Parkinson's or a genetic illness; however, whatever I have is on only one side of my body, and is from a surgical stroke and Anaphylactic reaction to a prescription drug alergy. I've been reluctant for several reasons, but another brain surgery gone bad was impossible for me to consider. A 12 year battery seems like another miracle. Sorry about your voice issue; minor concern to my mind. 😏 (Brain Aneurysm)
Yes, I'm doing great compared to most people who have had parkinsons for almost 20 years. My voice is the biggest problem - I can't articulate or talk loudly. Only whisper.
Kenny, my husband has just completed surgery 1 for the electrode implants. Surgery 2 is next week. However, I've noticed a significant change in him since stopping the Azilect medication this spring. He walks stiffer, shakes more, face droops, etc. Do you still take Azilect? I'm wondering if he needs to go back on it.
God Bess you for sharing. I’m going bro have the surgery in about a month and I was very nervous about it until I saw your video, Thank you for the confidence! RW
Thanks for sharing this...I'm planning on having the DBS in a few months....I'm 55 yr's old in my 8th year of the disease..My symptoms are similar to yours. Your video gives me some comfort as I'm not looking forward with getting a hole drilled in my head and wearing the battery pack in bedded
Hello Jim i am writing to you from Germany, can you tell me where is it possible to be operating who make this can you write me a private message with the adress and telephone?
I watched your video because I too have a Medtronic device, but mine is for pain. Thank you for sharing your experience, strength and hope with us. God Bless you sir, you are a brave man. As a former woman Marine, the highest honor I can bestow on you is Semper Fi- meaning, Always Faithful! I can tell you are an honorable man. Again, God Bless you and your family! Live long, and prosper.
My brother in law just got approved for this surgery. He's turning 30 this year. He's been on different medications for at least a year and a half. I'm nervous for him to have the surgery but I'm sure he will be fine. I've noticed him having sloth like movements prior to the tremors. When he'd reach for a cup it was so slow but not shaky or jerky; very slow and smooth. Then his walking became slow. Then hand cramps and tremors when typing at work. Now he can barely walk without stumbling, his head jerks. He looks like a drunk; my heart breaks for him!! And he takes such great care of himself, he's on a great diet, he works out daily he started meditating. I'm looking forward to when he can feel like himself again instead of feeling like a burden.
Ohhhh, I'm so sorry and understand your pain. I am at the point of waiting for my unit to be turned on. I'm very grateful you have this miracle! Vocal is an issue for me as well. It makes me very embarrassed
blood pressure. Would this add any risk to the procedure? Seeing my dad gradually worsen has been very painful for me especially since I start college again soon so I won't be able to see him often. I would do anything to make him feel better. Thank you, -Krystal.
Sir i would like to see, another follow up video you dont necessary need to turn off the machine just talk about having the implant for 6 years thefirst heart pace maker was supposed to last a few weeks it lasted decade's, withtodays techihope yours last century's
replacement battery surgery was covered in January 2013. The risks of surgery are such that ANY brain surgery could have complications - mine was performed at Stanford Medical Center. My wife, Beckie was the one more concerned about the risks. I just wanted the relief. As far as high blood pressure, your neurosurgeon will assess your dad's worthiness for surgery. Unfortunately, PD is insidious. Nothing yet stops the progression. DBS only covers it up. I have a blog you may
Hello. I notice that when DBS is switched on, you do not smile and your face is not as expressive as it was in previous videos. I assume the DBS was tuned to deal with your PD as it was three years ago, is it possible to have it re-tuned to deal with your PD as it progresses?
Wow! You probably wanted to go take a nap after that experience!!! Thanks for the encouraging info! I have a friend who is interested in this. I hope they get this also!!!
Did you exercise and Diet also other then just surgery ? I have a very good friend that had this surgery in 2011 and acts like you with the DBS Is turned off But no tremors. This is why I ask. I want to help her SO BAD IM Studying and have learned a lot but still need to learn much more. Thank you for your post SO MUCH AND CONGRATS
Tonya Eason Thanks for your comment, Tonya. I'm relatively active, but no - I did not exercise rigorously or have a special diet before or after surgery. However, I've just started walking recently... BTW - the National Parkinson's Foundation has some GREAT booklets that I've found helpful: Medications; Fitness Counts; Nutrition Matters; What you and your Family should know; Speech and Swallowing; Mind, Mood & Memory. Here's the link www.parkinson.org . You'll find them on the publications page - available for order - hard copies or PDF downloads. I highly recommend them for you and your friend.
+Ken Miller Hi Ken. Watching your video has given me a huge dose of optimism on how I can treat my mum. She's a kidney transplant patient who developed Parkinsons post her transplant. Thank you for being my beacon of hope and I wish you the best of health. Also if it's ok by you I'd love to be able to connect with you to discuss the treatment...hence if you could share your email; I'd be obliged!
I had DBS done 5 years ago for Essential Tremors. My hands and my head would shake uncontrollably. I turn mine off every night before I go to bed and back on when I wake up to save battery life. Sometime within a year I will have to have the battery replaced. I would have the 7hr surgery done again - in a heart beat. It has changed my life. I suffered with Essential Tremors for 30 years.
Hi Krystal. I'm so sorry to hear that your dad has Parkinsons. To answer your specific questions, I'm 62 now and was diagnosed when I was 54. My experience is that people over 80 may find it difficult to qualify--but at 65, your dad is right in the 'sweet spot' so to speak. As far as insurance goes, at the time of my DBS surgery I had an Anthem Blue Cross policy and everything was covered. Now I'm covered by MediCare with Blue Cross as the secondary. Between those two, my
I'm watching this video as part of a class paper on DBS, and it is absolutely incredible to see how this works. It's like he is two different people. Thank you for sharing this.
Sir this battery is life time or expired after some year in Pakistan my father do dbs but my dad battery is expired every 4year and then doctor change the battery plz guide me about this battery
My original equipment was Medtronics with a regular battery . I had to put a new one in every two and a half years. Three years ago I switched to Boston Scientific with a rechargable battery. It was a great decision. It has a battery life of 15 years.
Thanks for the video, When people see me shake l tell them l do good with a salt shaker, but l Don't Lick peanut butter Off the knife anymore...Seriously though, l willl be having DBS in February of 20 20....I'm excited.....
I had my dbs surgery 6 years ago.....Am now experiencing l.h.s. Parathesia spasms ....neurologist has tried adjusting output but so far no success.has anyone else experienced this reaction, and, if so was it able to be fixed?
My mom is suffering with Parkinson’s disease for more than 10 years, i will check with her doctor to see if we are able to use this treatment for her. Thanks for the video
grt..I'm a dbs counselor. This vedio is soo very helpful for the dbs patients who have lot of querries ...i hope this vedio vill help them in decision making. thanks for sharing.
I had DBS 6 years ago. I turn mine on and off every night: prior to going to bed and when I wake up in the morning. I do this to save on battery life. I had a new battery installed after 5 years 3 months.
you not do cramping hand movement check after DBS system switch on if it is activity control to takeover the parkinton's disease like other video with parkinton's disease with DBS have to to show the hand movement check
Thank you for sharing your experience Others can discover motion and stability of the body and mind can be greatly returned to the individual to live a happy life.
I've never tried to put into words how it feels...it does't hurt...and only lasts about 2 seconds. I've only done it a couple of times in the past 2 years, but the sensation wouldn't keep me from doing it again if I had a good reason to turn it off and on again. Thanks for asking.
thank you so much for this video! I'm learning about Parkinson's in school currently and your videos have helped me understand it so much! God bless you
Hello, my dad currently has Parkinsons and his symptoms are similar to yours in the OFF state, except his tremors are not quite as severe. I have a few questions I would really appreciate if you could answer. How old are you? My dad is turning 65 this year I was wondering if age has any effects on the outcome of DBS. Money is currently tight for the family so I was wondering if insurance covers most of the cost of this procedure? Also what are the risks of this surgery? My dad suffers from high
As someone diagnosed with PD 3 1/2 yrs ago and potentially facing DBS surgery in the near future, I'd like to ask, why would you ever turn the unit off in the first place?? Is it something you have to do occasionally?
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I too had this done about a month before your surgery (two years ago in September 2014) and I kiss the ground my neurosurgeon walks on. My tremor, like yours, disappeared almost immediately after the stimulators were turned on by my neurologist. I watched your surgery and had the same experience during the procedure, where during the probe placement test phase, my shaking stopped completely. I don't remember ever being that relaxed up to that point. I'm so glad your surgery went well and thank you for posting it on RUclips.
where did you have this done? Ive heard the surgery is only as good as the controller, thanks
Hi!! Who did the surgery ?
I had mine done in 2010. Like you I worship the ground my Dr. walks on. Every year I send him a thank you card . I had it turned off one time for a cat scan. never again. To think I was in the U.S. Air Force for over 20 years in avionics putting up with the ridicule. I am a much stronger person now. The Veterans hospital did mine
Susanne Bergstrom ll
Bruce Skinner my father has PD ، where didi u made it , whats the cost, could it be done for any stage of parkinson
Thank you for putting up these videos and contributing to awareness of new treatments and parkinsons disease! It takes a lot of courage to show vulnerability and even more courage to take part in a pioneering treatment like DBS. I am so happy for your amazing progress and wish you the best of luck1
I am having DBS bilateral surgery Dec. 4, 2023 - with pulse generator being put in Dec. 11. I have hope and many prayers are going up that once my system is turned on, programmed for maximum benefits, I will have control of my essential hand tremors and possibly other issues - with minimal side effects. I don't have Parkinson's. Any time I see that DBS helps gives me more hope. I have Spasmodic Dysphonia. It would be a joy to have help with that, but they are targeting the hands. I wouldn't mind a Christmas miracle, but I really just want to be able to do everyday activities normally again. That is one of my prayers this Christmas. Lord willing, it will happen for me. I am so grateful with this man that it has helped him.
Wow that's amazing! I just watched your surgery and all I can say is "OH MY" bless your heart! Glad you're better. Thanks for sharing.
Hello Trisha, how are you?
@@jefrossman1877 hi Jef
@@trishasnails7359 hi, how are you?
I am so glad you had someone there with you. I was scared for you until I heard her voice...only because you hadn't turned the device off for over a year and I wonder how much shock you went into when you felt how drastically different your motor functions were affected. I would have gone into a panic.
Wow!! Seen you going from worse to good!! May you enjoy this life to the fullest... This surgery works like a miracle on you!!
Just fantastic - thanks so much for posting. I am so happy for you and the result of your surgery. Excellent.
Wow amazing you filmed this! Thank you. I want my dad (who has Parkinson) to do DBS but he is affraid. Clips like this will maybe help him to do it.
I know next to ZERO about Parkinsonism but the B&A video of this therapy proves the inventor deserves a full provision in the Nobel league. To not recognize this achievement would border criminality. . .
Thank you so much for SOOO many updates and videos. My dad is thinking of having this procedure. Thank you thank you thank you!!
I had my DBS done 9 years ago. I would do it over and over again. I know how this man feels!!
Thanks for your sharing. Does the effect get worse. Thank you
I'm really happy for him
This is amazing. Thanks for sharing!
Mahdy Khayyamian m
Thank you for sharing this video. It was very helpful and insightful.
Im scheduled for DBS surgery in november. My tremors are unique in that they arent parkinsons based or essential tremors but theyre medication induced. I cant go off of the medications and no other treatment for the tremors has worked so i feel like this is my last option. My doctors dont know 100% if this will work for me because of my tremors being medically induced but i feel like i have no choice. I cant do anything on my own that involves fine motor skills like cutting food or holding a cup of water.
Thank you 🙏SO much for sharing this.
So very much!
Watching your videos is like watching my father. He is extremely hesitant about any surgery. How long did it take for you to recover after the surgery?
my mother had the same surgery. after the procedure she stayed in the hospital for like a week and a half. then she came home. so not very long :)
I had DBS surgery the end of July '17. Other than surgery days, I took ONE day off work. I have been runnin' and gunnin' ever since. This is the greatest thing I ever did for myself!
This is inspiring; thank you for sharing.
Thanks for sharing your experience, how mutch it cost?
Wow what a great video, thanks for making this. My dad had DBS back in 2010 and although he doesn't have tremors with it on, it doesn't help him with walking as much anymore. He was able to actually run after his second surgery, but now your "off" looks like his "on", with the shuffling and freezing and falling as well. Do you know what your DBS is set at? Do you get the settings adjusted regularly? How are you doing now? Thank you
Megan Green N
Are the bumps on your head from the surgery? Also, it seems like you have a really good partner there! :)
Choctawnic yes. They place caps over the diodes to protect them
Initially they appear quite prominent, but they shrink as the swelling goes down.
Fantastic.
Looks like STN DBS. Do you still take any medication? Did you manage to stop meds completely after surgery? What meds, and how many doses a day were you taking before DBS?
My surgery was over 11 years ago. I didn't take ANY meds until a year ago when I fell and broke my femur at the hip. I now take carbi/levodopa 25/100 three times daily. It helps my balance. I had the DBS to avoid the side effect of dyskinesia as well as to stop the tremor. My speech is currently terrible. I think that's a deteriorating process of the PD - not a direct result of the DBS because my speech does not improve when I turn the system off.
At least have to find a medicine..... like the insulin..... for the PD..
Allen Deborah Hernandez William Brown Kenneth
One question. Does the device effect your cognitive functions any way?
That's a bit of a silly question to ask after watching what he's like when it's off.
Cognitive functions are abilities like logical thinking or emotional response. I can see barely anything in that video that would give me an impression of those functions on a higher level. So yes, the question if DBS effects cognitive functions is a widely discussed fear of neurosurgeons and an ethical questions that matters. Luckily the DBS usually does not effect cognitive functions.
Abby Overpass
find quite helpful. w w w . Actually It IS Brain Surgery. blog spot. com
(Type in that web address without the spaces)
Thank you for your questions-- I hope I was of some assistance and please let me know how your father is progressing.
Kenny
I had DBS for a little over a year and had to turn it off once for an EKG. I was worried but my major symptom of rigidity was not noticible in the short time 5 minutes I had to have it off. I was diagnosed 12 yeas before I resorted to DBS. I think what you did was very brave...and hopefully helpful to those considering the surgery. Although it is not a cure, it is a giver of life back to many people. The biggest thing I like about having DBS is not having to crawl to the bathroom anymore.So very thankful for God's peace about surgery for me. It is a personal decision and I am so glad i made the 'go with it' decision. I think the one thing i would tell people is it is long process requiring patience and good communication with the person adjusting the stimultion.
Hi Diana,
Thank you for the comment.
Truthfully, I've been a videographer for 25 years and love the adventure. I didn't have to turn it off...just wanted to see what would happen. In addition, we professionally captured the entire surgery in HD video. When the time is right, I plan on editing it for various audience groups. These video clips will provide a chronological record of the process. Please checkout my blog at ActuallyitisBrainSurgery.blogspot.com
I am currently in the process of having DBS for essential tremor (not Parkinson's). I had the first surgery on 5/30/17 and will have the second surgery on 6/13/17. I'm looking forward to the results. I have to say, the experience of the surgery itself was pretty intense, but it will all be worth it if it only fixes part of my tremor. Wish me luck!
I Wish you the very best and hope everything turns out well. My Father will have this surgery in August. It will be for free as he is a volunteer. Which is why i am worried because i feel it wont be as good as when you pay for the surgery. I really hope it goes well
ProWanted, If your dad's a volunteer, I'm assuming he's participating in a study, which would make the team eager for everything to go well. He might get better care. Remember, the surgeons performing this procedure are at the cutting edge of medicine. This is what they've studied their entire lives to get to do. When I entered the operating room, I knew I was being taken care of by a large team of professionals who were dedicated to my getting a good result. Sure you dad will be in good hands. Also remember, this procedure is NOT experimental; I was told it is considered "standard of care." There is at lease a 20-year track record on this procedure. Good luck to your Dad and all of your family!
How did it go?
Good luck
I have Essential Tremor, reaching a point complicated self care, mostly because of dyskinesia on left side of body - mostly left hand. CONGRATS.
I'm faced with deciding to do this. This really helped me.Thank you
My father just got DBS surgery in the past twelve months after years of suffering with Parkinson's. I helped get him to the surgery and then home, but I don't exactly live close and it took a month or two before he came over to my house again with the DBS active. Without much of a thought, he said "I'm going to grab some water" and stood up out of my arm chair, walked across the room to the half-flight of stairs, went up to the kitchen and got a glass of water for himself. It was the fastest I had seen him move in over a decade and it nearly brought me to tears!
I've been trying to find a way to explain the change, it's so noticeable it's night and day, and this video is a near exact replica of what I see with my father pre-DBS and post-DBS. Thank you for posting this and sharing, I hope this becomes a more common treatment for Parkinson's and continues to be more and more effective as we learn more!
Thanks for such a nice sharing...my dad is also suffering from it..I will show him this video and he will definitely get a mental boost
I did this DBS surgery for my hands tremors in 2017.If I could to take time back, I wouldn’t do it. I’m in pain for 2 years & everyday took a lot of painkiller.I talked to them but they don’t want to help me. I really don’t know what to do.
So many thanks for sharing this video.I am an amator engineer and am working on deep brain stimulation.Your videos gave me a reason to move on! now I know how much helpful the development of this science would be! I wish you health :)
Yeah we really need amateur engineers working on brain implants thanks man
I've just started the process at Rush in Chicago. thank you so much for sharing.
Thank you all for your comments. It's been 11 years since my surgery and I had hoped for 10 years tremor free. It's still working. I can't talk very well (actually hardly at all) and my balance is shakey, but my attitude is still good and hopeful for another10 years.
Thanks for your sharing. Does the effect get worse. Thank you
Hi, my name is laiouer brahim and i am from Algeria, thank you very much for your videos about PD
my mother is having the same symptoms like you when stimulators are off
can you plz estimate the coast of the DBS surgery
cauz we are planing do it in france ... wish all the best for you Sir .
That's pretty freaking amazing.
First of all, thanks for posting this video.
I notice this video was posted 9 years ago. Today is April 30 2022.
I wonder how you are doing after 9 years.
My wife just had the procedure done yesterday.
She is diagnosed with distonía in her lower jaw and can't talk properly or chew food.
I hope this will help her improve her life.
I want to ask you since I noticed that you also had problem with your speech.
Are you able to eat and chew food when it is on?
Thank you for any information or advice you can give us.
God bless you!
Oscar - Thanks for your comment. I'm so sorry to hear about your wife's distonia. I can eat with minor problems. My tongue doesn't want to comply sometimes but my real challenge is with my speech. I can whisper fine, but have a very difficult time talking loud. It's been 12 and a half years since my surgery and despite the talking and some ongoing balance and freezing issues, I have been very happy with the relief that DBS has brought into my life. Hang in there, my friend. DBS is good.
@@kenmiller9047 You look so good! I don't have Parkinson's or a genetic illness; however, whatever I have is on
only one side of my body, and is from a surgical stroke and Anaphylactic reaction to a prescription drug alergy. I've been reluctant for several reasons, but another brain surgery gone bad was impossible for me to consider. A 12 year battery seems like another miracle.
Sorry about your voice issue; minor concern to my mind. 😏
(Brain Aneurysm)
Yes, I'm doing great compared to most people who have had parkinsons for almost 20 years. My voice is the biggest problem - I can't articulate or talk loudly. Only whisper.
The voice problem is the physical illness progression, not the DBS's fault I believe.
This is very cool.. technology is amazing
Kenny, my husband has just completed surgery 1 for the electrode implants. Surgery 2 is next week. However, I've noticed a significant change in him since stopping the Azilect medication this spring. He walks stiffer, shakes more, face droops, etc. Do you still take Azilect? I'm wondering if he needs to go back on it.
Cari Espinosa me too. Regret doing it everyday.
Truly amazing, this surgery gives people their life back. Thank you for posting this!
Truly amazing, you are a brave man, glad its working for you and good luck to ya.
God Bess you for sharing. I’m going bro have the surgery in about a month and I was very nervous about it until I saw your video, Thank you for the confidence!
RW
Amazing.... I wish my father could try the operation... hes suffering over 15 years from parkinson and hes exactly the way this man when dbs is off
Thanks for sharing this...I'm planning on having the DBS in a few months....I'm 55 yr's old in my 8th year of the disease..My symptoms are similar to yours.
Your video gives me some comfort as I'm not looking forward with getting a hole drilled in my head and wearing the battery pack in bedded
+jim feeney Hey Jim... For what it's worth, it didn't hurt. And the symptom relief overshadows the trauma. Go for it!
Kenny Wayne
Hello Jim i am writing to you from Germany, can you tell me where is it possible to be operating who make this can you write me a private message with the adress and telephone?
I watched your video because I too have a Medtronic device, but mine is for pain. Thank you for sharing your experience, strength and hope with us. God Bless you sir, you are a brave man. As a former woman Marine, the highest honor I can bestow on you is Semper Fi- meaning, Always Faithful! I can tell you are an honorable man. Again, God Bless you and your family!
Live long, and prosper.
Thank you, Denise. You touched my heart.
The transformation is unbelievable! Your story is incredible. God be with you and may you always be well and happy.
My brother in law just got approved for this surgery. He's turning 30 this year. He's been on different medications for at least a year and a half. I'm nervous for him to have the surgery but I'm sure he will be fine. I've noticed him having sloth like movements prior to the tremors. When he'd reach for a cup it was so slow but not shaky or jerky; very slow and smooth. Then his walking became slow. Then hand cramps and tremors when typing at work. Now he can barely walk without stumbling, his head jerks. He looks like a drunk; my heart breaks for him!! And he takes such great care of himself, he's on a great diet, he works out daily he started meditating. I'm looking forward to when he can feel like himself again instead of feeling like a burden.
Ohhhh, I'm so sorry and understand your pain. I am at the point of waiting for my unit to be turned on. I'm very grateful you have this miracle! Vocal is an issue for me as well. It makes me very embarrassed
blood pressure. Would this add any risk to the procedure? Seeing my dad gradually worsen has been very painful for me especially since I start college again soon so I won't be able to see him often. I would do anything to make him feel better. Thank you, -Krystal.
Sir i would like to see, another follow up video you dont necessary need to turn off the machine just talk about having the implant for 6 years thefirst heart pace maker was supposed to last a few weeks it lasted decade's, withtodays techihope yours last century's
Sorry about having to send this in 3 parts.
my email is ken.group20@gmail.com let's talk direct. Thanks.
How are you now? It has been 10 years. My husband is deciding on having the op
We live in Australia
replacement battery surgery was covered in January 2013.
The risks of surgery are such that ANY brain surgery could have complications - mine was performed at Stanford Medical Center. My wife, Beckie was the one more concerned about the risks. I just wanted the relief. As far as high blood pressure, your neurosurgeon will assess your dad's worthiness for surgery.
Unfortunately, PD is insidious. Nothing yet stops the progression. DBS only covers it up.
I have a blog you may
Hello. I notice that when DBS is switched on, you do not smile and your face is not as expressive as it was in previous videos. I assume the DBS was tuned to deal with your PD as it was three years ago, is it possible to have it re-tuned to deal with your PD as it progresses?
Peter Austin yes
@@jeankane5380 how is Ken now?
Wow! You probably wanted to go take a nap after that experience!!! Thanks for the encouraging info! I have a friend who is interested in this. I hope they get this also!!!
Did you exercise and Diet also other then just surgery ?
I have a very good friend that had this surgery in 2011 and acts like you with the DBS Is turned off But no tremors.
This is why I ask. I want to help her SO BAD IM Studying and have learned a lot but still need to learn much more.
Thank you for your post SO MUCH AND CONGRATS
Tonya Eason Thanks for your comment, Tonya. I'm relatively active, but no - I did not exercise rigorously or have a special diet before or after surgery. However, I've just started walking recently...
BTW - the National Parkinson's Foundation has some GREAT booklets that I've found helpful: Medications; Fitness Counts; Nutrition Matters; What you and your Family should know; Speech and Swallowing; Mind, Mood & Memory. Here's the link www.parkinson.org . You'll find them on the publications page - available for order - hard copies or PDF downloads. I highly recommend them for you and your friend.
Thank you so much
+Ken Miller Hi Ken. Watching your video has given me a huge dose of optimism on how I can treat my mum. She's a kidney transplant patient who developed Parkinsons post her transplant. Thank you for being my beacon of hope and I wish you the best of health. Also if it's ok by you I'd love to be able to connect with you to discuss the treatment...hence if you could share your email; I'd be obliged!
Faiza, my email is ken.group20@gmail.com
Thanks for your support.
I had DBS done 5 years ago for Essential Tremors. My hands and my head would shake uncontrollably. I turn mine off every night before I go to bed and back on when I wake up to save battery life. Sometime within a year I will have to have the battery replaced. I would have the 7hr surgery done again - in a heart beat. It has changed my life. I suffered with Essential Tremors for 30 years.
Did you get any side effects after the years of dbs surgery?
Hi Krystal.
I'm so sorry to hear that your dad has Parkinsons.
To answer your specific questions, I'm 62 now and was diagnosed when I was 54. My experience is that people over 80 may find it difficult to qualify--but at 65, your dad is right in the 'sweet spot' so to speak.
As far as insurance goes, at the time of my DBS surgery I had an Anthem Blue Cross policy and everything was covered. Now I'm covered by MediCare with Blue Cross as the secondary. Between those two, my
Thank you for this, my mother is in the process of possibly getting one. Stay strong brother!
It's still working after 11 years. Hope your mom's works out.
I wish Muhammad Ali was still alive to get this treatment😞😞
watching your video giving me hope
How are you now? Dbs is still working properly?
Whats the cost of this surgery
I regret having this done. No balance, And slurd speech. Can barely walk. Only thing good is hands don't shake
Hi Doug
How are now?
How are you now. Any improvement?
I'm watching this video as part of a class paper on DBS, and it is absolutely incredible to see how this works. It's like he is two different people. Thank you for sharing this.
Thank you for sharing this video , I use it often in my pathology class.
Garcia William Robinson James Wilson Carol
That’s incredible!! I’m scheduled for DBS July 2024
You've got this!!!
Sir this battery is life time or expired after some year in Pakistan my father do dbs but my dad battery is expired every 4year and then doctor change the battery plz guide me about this battery
My original equipment was Medtronics with a regular battery . I had to put a new one in every two and a half years. Three years ago I switched to Boston Scientific with a rechargable battery. It was a great decision. It has a battery life of 15 years.
Thank you so much for your sharing!! This is amazing and inspiring!!
Hello Ying Li, how are you?
Are you still in this world sir if i may ask?
Thanks for the video, When people see me shake l tell them l do good with a salt shaker, but l Don't Lick peanut butter Off the knife anymore...Seriously though, l willl be having DBS in February of 20 20....I'm excited.....
You're welcome! In November it will be 10 years tremor free. My voice is in the dumpster, though.
@@kenmiller9047 hi Ken. What do you mean by your voice is in the dumpster?
Hi my friend.
How are you after the operation?
@@laliarboleda711 my voice is down to a whisper - a progression of Psrkinsons. i have a difficult time speaking.
@@kenmiller9047 are you still driving, walking, traveling?
God bless you ALWAYS
What do u DO know
I had my dbs surgery 6 years ago.....Am now experiencing l.h.s. Parathesia spasms ....neurologist has tried adjusting output but so far no success.has anyone else experienced this reaction, and, if so was it able to be fixed?
I go for my consultation with my neurosurgeon and the Medtronics Rep. I've been in pain over 2 years.
My mom is suffering with Parkinson’s disease for more than 10 years, i will check with her doctor to see if we are able to use this treatment for her. Thanks for the video
God bless you and your family, it’s amazing work the DBS 🙌🏽🙏 pretty soon we’ll find the cure I’m certain of it. have all my faith in GOD 🙌🏽
grt..I'm a dbs counselor. This vedio is soo very helpful for the dbs patients who have lot of querries ...i hope this vedio vill help them in decision making. thanks for sharing.
+Anushree Jyotishi Thanks for your comment. It's now over 6 years since I had DBS surgery and I'm doing better than ever.
Anushree Jyotishi hiii i have essential tremor can u help me
I had DBS 6 years ago. I turn mine on and off every night: prior to going to bed and when I wake up in the morning. I do this to save on battery life. I had a new battery installed after 5 years 3 months.
you not do cramping hand movement check after DBS system switch on if it is activity control to takeover the parkinton's disease like other video with parkinton's disease with DBS have to to show the hand movement check
Why don't you post more videos?
DBS surgery works very well for Parkinson's disease. Thank you so much for sharing! Amazing!
Thank you for sharing your experience Others can discover motion and stability of the body and mind can be greatly returned to the individual to live a happy life.
I've never tried to put into words how it feels...it does't hurt...and only lasts about 2 seconds. I've only done it a couple of times in the past 2 years, but the sensation wouldn't keep me from doing it again if I had a good reason to turn it off and on again. Thanks for asking.
That is SOOO AWESOME that ur implant fixes ur tremors! I can't imagine what u hafta go thru!
Thanks for sharing. It means a lot to us especially that we have smn in family have parkinsons
Wow, amazing. God bless you sir.
Hello 👋 Kimberly
Amazing what technology can do today.
thank you so much for this video! I'm learning about Parkinson's in school currently and your videos have helped me understand it so much! God bless you
This is really amazing to be able to see how huge of a difference there is
thank you sharing your video with us. you are very brave man. my situation resemble what you have.
imagine if when you turned it off youd be so much shaking you couldnt turn it on
Does it improve voice symptom? What about the other symptoms
Kindly tell me the cost and from which country
Hello, my dad currently has Parkinsons and his symptoms are similar to yours in the OFF state, except his tremors are not quite as severe. I have a few questions I would really appreciate if you could answer. How old are you? My dad is turning 65 this year I was wondering if age has any effects on the outcome of DBS. Money is currently tight for the family so I was wondering if insurance covers most of the cost of this procedure? Also what are the risks of this surgery? My dad suffers from high
As someone diagnosed with PD 3 1/2 yrs ago and potentially facing DBS surgery in the near future, I'd like to ask, why would you ever turn the unit off in the first place?? Is it something you have to do occasionally?
Look up marijuana and Parkinson's
I "test drove" THC before committing to surgery...... Let me just say that I DID have the surgery. But I only have essential tremors ;)