DBS Off vs DBS On

This video shows the effect that Deep Brain Stimulation (DBS) has upon my Parkinson's Disease symptoms. I perform a number of tasks with DBS switched off, and then repeat them with DBS switched on - the difference is amazing!

[@daynarae4181]

Thank you for sharing!! I am in the health care field and it is amazing to see the effects of DBS. I am so glad this was able to improve your quality of life. Thank you for taking the time to educate others.

[@greggeorge3638]

Thanks again for a great video. I had DBS completed in June and was surprised at how emotional I became just watching your tremor. I'm supposed to turn mine off at night (to conserve battery), but I often just leave it on; maybe because I hate experiencing myself in such a debilitated state. To me, you seemed to be courageous to videorecord yourself in tremor mode. You mention "carrying drinks back from the bar WITH EVERYONE WATCHING." I had got to the point where I avoided such "performances" by rarely going out with others in situations where that might occur. I was on my way to becoming a virtual shut-in. I am so grateful to my surgeon and the team that plugged me in a turned me on!

[@ianfrizell]

Hi Greg Glad to hear your DBS has been a success. I still get emotional when I think about the first time they switched me on! Cheers, Ian

[@theavannooijen6621]

Dear sir,thank you for sharing this video. My daughter also has Parkinson's diseae and underwet the same surgery as you did. She's making good progress now. I'm grateful to you for this information,and I wish you a happy life.

[@ianfrizell]

I hope your daughter's operation has given her back her life, as it has me!

[@joelockwood8157]

Oh my God! You legend! After watching a couple of your videos I am going to go back to my GP for a reassessment. Thank you for sharing!

[@casanford1]

You are a very heroic and brave man for demonstrating this so impactfully. I wish you well in future progress.

[@NoSoup4U.]

Absolutely amazing ....... so glad this treatment was available to you!

[@DihelsonMendonca]

Thanks, man. You are a hero, a winner ! Continue this way !

[@riverbender9898]

Thank you for that incredible demonstration of the improvement provided by DBS.

[@rubylane9862]

Thank you for sharing. I admire your bravery.

[@Se7enACK]

This is amazing. I didn't know this even existed until reading a HONY post about it. Thanks for sharing!

[@DataSlam]

Courage: You've got it! Inspirational man, inspirational.

[@geekcuisine1831]

Ian- Thanks for making this video. I am a student interested in neuroscience and it is really cool to see the impact your implant has made. I am happy that your quality of life has improved!

[@szrgirl]

Excellent video! Thank you. I have a friend asking about the value of DBS and I’m sending yours as my example. Much love and care to you.

[@greaterintent2910]

Thank you for sharing. Your video was referenced at a talk on the neuroscience of Parkinson's Disease at my university. All the best to you, Ian!

[@ianfrizell]

Out of interest, which university?

[@BlackbirdIX]

Hugely informative, and very concise. Great.

[@ianfrizell]

Thanks!

[@hangwitang]

Thanks Ian. All the best and keep well

[@AmandaLubyk]

Thank you SO much for sharing this 💛

[@lynnfulton1696]

Thank you for showing me this. I had forgotten how to turn it off and on for my surgeries.... I remember how my tremors were before I had the DBS surgery..SO helpful to me.....

[@Houldey]

Amazing stuff, so glad that science is always being pushed forwards and having such fantastic positive impacts on people :)

[@helenharper307]

Thanks for your video which is helpful to people with Parkinsons. My husband had DBS in 2019 and his quality of life is vastly improved thanks to the team at Southmead in Bristol. But not everyone is deemed suitable for this operation especially the elderly. He was 68 at the time.

[@getsomeairr]

Man!.... You have really created serious awareness which is really helpful for others.... Bless you for that!.... Happy Life further!❤️😊💞

[@gabriel316zombie]

i'm doing project on this and this video gave me a good example of how it effectives your body thank you

[@Newnski]

Bless you and the surgeons that did this for you :)

[@Nipponing]

No. Just thank science and the people of it.

[@beefknuckles]

Modern medicine is incredible. I'm glad this has been able to help you. Have a great day Ian!

[@sooyaapoki]

Much respects for you. I’ve learn so much watching your video. Stay safe and God bless you

[@ElenaMuratovaCoach]

Thank you for sharing this with us! It is very touching video!

[@rageagainstthebath]

After seeing this, I am absolutely confident I'd go with DBS too, if I ever had PD. Thanks a lot for this demo.

[@ianfrizell]

Thanks for your comment!

[@lainaadorable8]

Thank you for sharing! This is a very informative video, I'm glad this has helped you, take care and I wish you well!

[@ClusterHeadSurvivor]

Well done my friend. Breaks my heart to see you suffer but so glad you get relief from DBS. (highest setting I ever had mine was 2.2)

[@ianfrizell]

Cheers, Tom! Thanks for the links to my channel on your vlogs - I have watched loads of them, but don't always comment...

[@cmcjss]

Thank you very much. God bless

[@StinkyGreenBud]

That is absolutely amazing! I really appreciate you sharing these insights into your world.

[@satishramteke7955]

I loved your sarcastic comments about beers etc

[@kimyasolhjo1763]

Thank you sir, this video is so informative for other patient

[@francovasquez6889]

This is amazing!

[@carlo7501]

Amazing!

[@claytong8605]

Thanks for your video. My mom just had this surgery done today. Everything went great. I hope this makes her happy. It will give her a piece of mind. She feels like she is a burden bc of her condition even know she's not. Just want her to be happy and healthy.

[@ianfrizell]

I hope your mum's operation went well!

[@annepascoe9133]

I don't how I ended up here ,but anyway I'm so very pleased and happy for you. ❤

[@annepascoe9133]

How are you doing presently , I really think that it is amazing how it controls yr tremors .

[@jason950216]

Wizardry! Good luck and good health!!

[@ballHand]

Awesome

[@lennarthinz2209]

incredible!!!

[@sneakerssellor150]

GOD Bless! HOPE EVERYTHING WORKS OUT FOR U..I HAVE THE SAME ISSUES WITH MY DBS

[@khairyabdelmonemalmashad2748]

Thanks a lot for your video that is very impressive about a successful operation dbs . this is an excellent American invention. Although it's not a curative of PD it dramatically improves the quality of life in patients with PD

[@Nipponing]

So sad but so amazing.

[@stephanieredden8861]

Tremor has made my life complicated too. They say Essential Tremor.

[@gema6217]

Awesome ! I'm 37 years old, I had ET since high school. I don't know whether my ET will become PD in the future. My left thumb & left middle finger are shaking severely if I move it slowly. My left cheek too if I smile slowly. So do my toes if I press the floor slowly. I hope that in the near future neurologists can cure this disease without surgery !

[@prabhatgarg2866]

Same problem here can you please tell me do you also feel leg length disperacy while walking

[@gema6217]

@@prabhatgarg2866 No, I don't feel leg length discrepancy while walking.

[@larryschneiderjr7058]

Bravo!

[@travis9190]

Amazing

[@moef.5326]

Miraculous!

[@darienschroeder2542]

My Dad has been undergoing tests for DBS. Seems like it's going to be a go ahead, it really sucks seeing him like that. Been watching over the years as his tremors just got worse and worse and as he became more and more limited. And as a result of not being able to do much his muscles especially his back ache from sitting around all the time. Thankfully he isn't having any other direct symptoms of Parkinsons like speech, balance or anything. Can't wait to see him get his surgery done and he be able to recover a bit and do somethings he hasn't been able to do for awhile.

[@ianfrizell]

Hi Darien Be warned that DBS often affects speech and balance. My speech and balance have been impacted, but still the benefits are worthwhile! Cheers, Ian

[@edwardcasati3374]

Thank you to modern science. Although there is no cure now, imagine what you had to live with 100 years ago compared to today. Having been diagnosed only 2 years ago, I have high hopes of continued progress within my lifetime.

[@ianfrizell]

And new advances are being made all the time...

[@ctaber2011]

Wow, what a difference.

[@bobarmstrong2122]

Thanks for sharing Ian. I recently had DBS for essential tremors and still have headaches from the frame and surgery. They tell me to give it 3 weeks for headaches to go away Doing some therapy for walking stability and strength training. I am curious how long it took you to learn what settings were just right for you.

[@ianfrizell]

Hi Bob It took about a year to get optimum results - there are always some little wrinkles that need ironing out, even now... Cheers, Ian

[@ranjandish]

Dear Ian, Thank you so much for the video. I have a question regarding your video. When you turn the IPG off, how long it will take to feel that the tremor is back? is it immediately or taking few seconds? By the way, I have a PhD in electrical engineering working on next generation implantable devices. I need to have some feedback from patients in order to design a closed-loop system. Thank you in advacne

[@ianfrizell]

Hi Reza It takes a matter of just a few seconds for my tremor to return. I think it took a few seconds longer to return when I made this video - these days it returns a little more quickly, probably due to progression? Best wishes for your design work. Cheers, Ian

[@ranjandish]

@@ianfrizell Thank you so much. It was very helpful. I can convince my boss about my idea with your claim. I hope it works in the trials. Thank you again.

[@kf5065]

It is very interesting and important. Sorry, my English is bad, but I really need to say thank you. And everything of the best in your future Привет из России

[@DC-jb7oz]

I can relate: I had DBS 6 years ago.

[@koenfvandenbrande]

Ian. Well done ! I have not yet been brave enough to switch mine off ... I had mine programmed with a group B with higher frequency which is supposed to improve speech ... Have you go any experience with that ?

[@ianfrizell]

They have tried everything to improve my speech but nothing seems to have very much effect on it. I'm kinda resigned to it now...

[@kale95]

does the effect of DBS last forever once you did the procedure? thanks for the great video.! really appreciate it. thank you!

[@ianfrizell]

Hi Kalana I'm certainly hoping that the effects will last forever, although I guess there could come a point when progression exceeds the ability of DBS to mask symptoms. I know of people who had DBS over 10 years ago, and still find it effective. Cheers, Ian

[@patersonangus]

Hi Ian, thank you for sharing. I was wondering if you could share a ballpark figure of how much this cost, and what the sort of timeline was from you first enquiring to having the surgery? Lastly, a detail, but are you ok to fly with it?

[@ianfrizell]

I believe the cost of the operation was around £25,000. It took about 12 months from referral to having the surgery. It's fine to fly with but I don't go through the metal detectors at security.

[@4mommynme]

Hello! Great video...very happy for your improved quality of life. My question is are you still taking meds....ie levadopa....Neupro patches...etc? God bless you for sharing🙏🏽

[@ianfrizell]

Hi Lee Thanks for the comment. I don't take any prescription meds for my PD (and wasn't taking any prior to DBS). I use cannabis to calm my tremor, dystonia, and anxiety - also helps me to sleep. Cheers, Ian

[@gopip6821]

@@ianfrizell Hi Ian, thanks for sharing this video. I have below questions, 1. how does it feel when you have to sleep without cannabis? 2. Do you see any changes in your memory power after DBS? Thanks again for sharing great video.

[@ianfrizell]

I have more trouble getting off to sleep when I don't use cannabis, and I waken more often. I find that my thought processes are slower following DBS, and my short term memory is worse (although my wife thinks it's just because I'm getting older!).

[@JoJo-zk2ek]

Wow!

[@ilchavista]

Hello, Ian. You mentioned that some of your symptoms were worsened by the DBS. Could you tell me which ones?

[@ianfrizell]

Hi My balance and walking have been affected, but not so badly that I am falling. My voice is weak and husky - in fact that is the subject of this week's vlog - kzbin.info/www/bejne/nKXQgWqMoMyki80 I have some dyskinesia (mild) in my right side that I didn't have prior to surgery. Cheers, Ian

[@sameerbhardwaj6539]

My father had it on 17th this month. It was really a very difficult phase for us. The tremors are still there. Doc's said it'll take about 4-5 months to adjust to the right amount of current to stop the tremors.

[@ianfrizell]

Hi Sameer It can take a whole year to get the programming right - it's such an individual thing! Cheers, Ian

[@ajayadrall1953]

Sameer, where did you get the DBS sugery done for your dad?

[@sfbmod]

"Technology is a gift of God. After the gift of life it is perhaps the greatest of God's gifts. It is the mother of civilizations, of arts and of sciences." - Freeman Dyson, the man Princeton found to fill Einstein's bunny slippers

[@khairyabdelmonemalmashad2748]

I'm a chest specialist from Egypt and I have PD for 10ys.or more. now I am too stiff to walk or to sleep comfortably.i hope to get opportunity for this operation dbs

[@doonkap]

Dear Ian, Its good to see you . I have few queries about the procedure from your personal experience. Did you find any side effects of the procedure? which country you did the procedure? How much it costed you in your country? I am in India and not sure how much DBS procedure is developed here.

[@ianfrizell]

I have noticed a deterioration in balance and voice, although it is possible that is due to normal progression. I had my DBS in London, UK - I believe the cost was somewhere in the region of £25,000, but was paid for by the NHS.

[@doonkap]

@@ianfrizell Thank you for the info and Take care.

[@noorabdelhalim]

bless you, what doctor and what hospital do you recommend. thanks Mr.

[@ianfrizell]

I recommend neurosurgeon Ludvic Zrinzo at the National Hospital for Neurology and Neurosurgery in Queen Square, London, UK.

[@noorabdelhalim]

Ian Frizell thank you sir

[@firestick1121]

Hi ian how long did it take to program the stimulators

[@ianfrizell]

It was adjusted every few weeks in the first year, until it was was near perfect as possible

[@futurewave244]

Thankyou very much for sharing ur experience My father is suffering from pd from last 12 years but till now only right hand and right leg are affected Can u please tell me that how much it cost and will it stop your tremor completely

[@ianfrizell]

I believe the operation is about £25-30,000 in the UK, and success varies from patient to patient. Sometimes my tremor is completely suppressed, and sometimes a little tremor is apparent. I recommend it! Cheers, Ian

[@lindataghon5712]

WOW..WOW..WOW..

[@lindataghon5712]

It is AMAZING what medicine can do these days. When I see something like this, I give Ultimate thanks to the Lord who has GIVEN knowledge to men for the betterment of us all. Mr. Frizel, you have been Blessed by the Lord and God Bless you always!

[@firestick1121]

Hi Ian how long did it take to program

[@ianfrizell]

It took almost a year of trial and error, but now it's just tweaked a little once in a blue moon.

[@youtubeexpose7234]

Godbless

[@danijel124]

But what is the power source for the electrodes in the brain. Or where is the power source???

[@ianfrizell]

The battery is contained in the neurostimulator, which is implanted in my chest.

[@DanBeauvoir-uo7yc]

.. i cant even make a spiral like that and im sposed to be healthy..😮

[@shahfibre]

Sir do the feezing and stiffness go away too with DBS incorporated?

[@ianfrizell]

I don't suffer with freezing, but I believe that it can be helpful. Stiffness was definitely alleviated. Cheers, Ian

[@shahfibre]

Ian Frizell your suggestion is highly appreciated sir. Many thanks

[@clgn83]

Hi Ian, My husband is suffering with Dystonia and he is being considered for DBS, May I ask Where did you get you surgery? And Who was your consultant? Many thanks in advance xx

[@ianfrizell]

Hi Charz I had my operation at the National Hospital for Neurology and Neurosurgery, Queen Square, London, UK - consultant Ludvik Zrinzo. Cheers, Ian

[@clgn83]

Hi Ian, Thankyou for your fast response, I have been looking into Dr Ludvic, May I ask “was you a private patient? Did you seek out Dr Ludvic yourself or was you an NHS Patient... many thanks in advance xx

[@ianfrizell]

Hi Charz I was an NHS patient. My neurologist said that I could choose where to have my operation performed, so I asked him to refer me to the best. I think I got the best. Have you seen the BBC video of Ludvic Zrinzo performing "awake" DBS? If not, you will find it in one of my DBS playlists - well worth watching! Cheers Ian

[@clgn83]

Ian Frizell Hi Ian, yes I believe you definitely got the best, that’s why I asked if you went private- your results are truly amazing, I haven’t watched the video but I definitely will, I have read up on Dr Ludvic, he seems amazing so I think I will look into getting an appointment with him..

[@clgn83]

All the best xx

[@LordLares7]

Could you follow up on the things DBS made worse or didn't have any effect at all?

[@ianfrizell]

It didn't affect my rigidity or muscle weakness (at least not on current settings). It has had a negative impact on my voice, which can be weak or slurred, and my balance and walking. I am still not falling, but am very aware of my postural instability, my walking is a little wooden.

[@LordLares7]

Thank you!

[@khairyalmashad9874]

For postural stability which is better target stn. Gbi

[@ianfrizell]

I'm afraid that I don't know. My stn DBS can affect my postural stability but I wouldn't like to say if this is the best target site.

[@tazcarpenter805]

God I pray , my brother will do this, his Parkinson’s is getting bad, what’s the healing time after surgery ?

[@ianfrizell]

This will obviously vary depending on the person, but physically healing took about 4 weeks. I tired easily for about 3 or 4 months after surgery. More info can be found at www.dbsacompletenobrainer.co.uk Cheers, Ian

[@DC-jb7oz]

It took me 8 weeks to completely heal from DBS Surgery. I had DBS Surgery performed 5 1/2 years ago in Pittsburgh, Pennsylvania. I had a new battery put in 4 months ago. I DO NOT have Parkinson's but rather I have Essential Tremors and your shaking is very mild compared to mine. When I turn it on 99% of my tremors are gone. I am a rather large man at 6' 6" tall and 260 pounds. The first time it was turned on I cried like a baby.

[@Mr5000bonerjamz]

Hi, I have been diagnosed with Parkinson's I am 25 years old. I have not been on medication due to side effects and can get around okay but sometimes with balancing and have tremor. Would you recommend getting DBS? I am scared that it will make me feel different with all of the electricity running through the electrodes. I hope it doesn't have an adverse effect but most results show improvement

[@ianfrizell]

I thoroughly recommend DBS. It has almost completely calmed my tremor, although my voice and balance have been affected. There is no doubt that it can affect your personality, but the programmers are skilled at programming around this.

[@Mr5000bonerjamz]

@@ianfrizell thank you for your feedback. That doesn't seem like a bad trade off. I go for surgery in a month.

[@slapperorange]

​@@Mr5000bonerjamz Hey Matthew, this might be a little bit on the late side as I just read you were planning to go for surgery a month ago. Just in case, I'm studying Neuroscience and am currently looking into the state of the art of DBS. Since you're only 25 years old, I would recommend to maybe look into getting a rechargeable battery rather than a conventional battery. And if you do go for the conventional battery, do ask your doctor whether the additional features of the Activa-PC type are worth it compared to the twice as long battery life of the older model kinetra. This is because the rechargeable batteries last longer than kinetra which lasts longer than the Activa-PC. This is relevant, first of all because you will probably want to minimize the amounts of surgeries you will need throughout your life in order to replace those batteries, and secondly because general anaesthesia (required for placing the device) seems to worsen the symptoms of people as compared to local anaesthesia in surgery. In any case, I wish you all the best!

[@HuiChang1942]

Like

[@lindataghon5712]

Has Michael J. Fox had this done?

[@ianfrizell]

He had surgery, but not DBS. DBS wasn't approved by the FDA at that time (I think!).

[@ryanmazer6166]

Ian, This is a great video. We are building an informational website: dbs.education/ may we have your permission to use this video independently and within the website so that more people can learn from your experience with DBS?

[@ianfrizell]

Hi Ryan I am happy for you to embed or link to my youtube video. What exactly did you mean by "use this video independently"? Cheers, Ian