Turning my Deep Brain Stimulation On and Off Two Years Later

It has been over two years now since I had my DBS fully set, and I wanted to see what my life would be like without my DBS. I had not turned it off since the last video I did of it two years ago . I was amazed to find out just how severe things were with it off! I am so thankful that DBS lets me live my life with Juvenile Onset Parkinson's. I also discuss my recent program setting change from a pulse width of 60 to 90, which has made a huge difference! progression happens, luckily there are things they can do with the DBS to combat that.
The video two years ago found here: • Turning my DBS off! [J...

[@jime2290]

Hi Jasmine, Thank you for sharing. I am a Medtronic Dbs recipient and on year 2 , Your early videos are a large reason I decided to have the surgery, it gave me my life back! I wish you would post more often ...I feel as though you are an old friend. one of my side affects is sort of a warped perception of time since the procedure, but I have continued to work full time and enjoy life again. I just wanted to thank you and wish you happy holidays. Jim

[@jasminesturr6127]

Hi Jim! This popped up for me and made me smile. I have had a rough year with friends who have passed and dealing with health in the times of covid, stepping back from everything and social media helped me heal. I have a lot of great things to get back to, and I plan in the next few weeks to make another video explaining where I have been and my plans ahead, both with this platform and also with my research work! Thank you a bunch for your message, this is exactly why I make these, I am so glad my experiences could help you make the choice, I am glad dbs has been so incredible for some of us dealing with this awful disease. I hope you have a great holiday season too!

[@ReineDeLaSeine14]

That is amazing. I’m so happy you’ve had such great results with DBS! (Btw, your outfit is super cute)

[@learnalongside254]

Wow, truly incredible. God bless you!

[@bigbennie54]

Your videos are very informative. I've had the DBS surgery and go for my initial programming tomorrow. You have prepared me for the experience, thank you.

[@jasminesturr6127]

good luck!! hope it goes well and gives you a great quality of life improvement! if you havent seen my PD 101: #3 how to get the most out of your dbs appointment, do so! i hope it provides a bit of a good idea of how to engage with your programmer. i am glad that I have been able to share this experience, thank you for your comment, its so nice to be able to see the importance of continuing to share . enjoy your new life tomorrow!!

[@TomWalterTX]

You are doing fantastic! I recognize the dreaded dystonia kicking in when you turn it off! I had mine BDS done in November 2016. Turned it off to see what happens! Nothing, I was convinced it was a placebo, dropped the remote behind the couch. My Golden Retriever was frantic to get back inside, and when I stood up fell flat on my face. Uh, it was working! Takes about 30 minutes for me to go into off stage. Come join us for Boxing Class in Austin, TX!

[@jasminesturr6127]

Everyone responds differently to it, my on and off is particularly fast which they say is a combo of my having gpi stimulation as opposed to stn and just my own unique body chemistry and physiology. Some people have a crazy immediate effect and some are slower. But everyone seems to have what you experienced! The 'is this really working' only to turn it off and find out that oh yes, it is definitely doing something! I was amazed the first time I turned it off. I was blown away this time too, but I dont think I want to do that again any time soon!

[@GoProGoalieUzi]

Amazing ❤

[@ginnybear5195]

I am so glad that you are able to use this technology!! What a difference it makes. I hope it is equally successful for other good candidates for the surgery. Are you able to pursue your intellectual interests/goals? Obviously you have a fine mind!

[@jasminesturr6127]

Ginny Bear hello! Everyone with DBS reacts differently but I have seen many people have some amazing results. I am able to pursue my goals, a little slower than others but I am getting there! I graduated with my BS in chem in 2016 and have since been living at home to regain strength after dbs and some serious GI complications from parkinsons. I have worked on some amazing projects since then, and hope to apply to doctoral programs in pharmacology in the fall, to begin fall of 2019. :)

[@dennis_Itr]

I’m getting mine soon. My DBS Can’t wait to get mine done

[@jasminesturr6127]

Dennis Ballesteros yay! Happy that you are getting it and I wish you as much success as I have had and more! Hope it changes your life and I hope some of the videos on my channel can help prep you a little for the procedure and recovery. Best to you!

[@company8600]

Thanks a lot for sharing. Please tell us where did you do the operation?

[@Everyonesmom1980]

Thanks this was a nice visual to see how much dbs helps! I hate when my meds wear off and speaking gets difficult especially when I'm trying to tell my kids what to do😅 they don't listen to me well when I can't talk to them right!

[@sergiosantiagojalao4071]

hello! I'm glad 2 see you gettin' well with DBS, congratulations. ¡¡You r inspiring!! I'm from Spain and my english isn't that good as I would like so sorry if I say something strange hahaha. I problably have a secondary dystonia, doctors are studying my case, after a brain stroke (derrame cerebral) because of the boxing hits. Does it bother you if I ask you some things? thanks in advance and sorry if I'm bothering you. Do u know if there is any problem at the time of doing sports or other activities that require effort and involve fatigue. I'm so crazy bout that because I want 2 return 2 do running and others sports (except martial arts, of course xD). ¿There's others things that the DBS can affect like talking or thinking...? Sorry but I have not been able to find many answers online and the visits with doctors take a loooong time to arrive. Thanks!!!! I hope u're happy n u can life with live fully. A huge.

[@pulsei3]

Hey. what drugs did you take before surgery and what do you take now.? I also had a DBC operation in 2013. the remote control is exactly the same as yours. 2-sided stimulation. nd 4 degrees. we can chat on Facebook, if you want to

[@karimhayek4459]

Hello i have done dbs operation in Turkey but the doctor didn’t give me any mean to turn it off or on. Is there any risk if I can’t control the battery ???

[@bryanreyes2225]

Hello Jasmine! My name is Bryan and I just wanted to say i’m very glad your doing well with DBS. My mother was diagnosed with Young Onset Parkinson Disease at the age of 38 now she’s 43 and she’s having trouble moving her left feet & arm. Right now she is taking carbidopa/levodopa but i’m encouraging my mom and her neurologist to have my mom do DBS. I just wanted to ask you if DBS is a permanent help with Parkinsons? Or will it wear off over time? And out of 10 what rating would you say DBS gave your life back again to how it was before you had Parkinson’s?

[@jasminesturr6127]

Bryan Reyes hi Bryan! First off, best of luck to your mom in finding a treatment that works! And i am glad she has a supportive family member in you, that is hugely helpful!! Youre question is a bit more complicated. So dbs surgery is only done after a few things. The qualifications are the person must be at a point where their carbidopa/levodopa has induced dyskinesia, they must have tried another class of drugs in addition to Ldopa (maob inhibitors, comt inhibitors, agonists, amantadine, ect.). They also have to not have cognative decline. If your mom is just using carbo/levo right now, and hasnt played around with other treatments, thats a step before dbs. I have another video on my channel called parkinsons 101: know your meds. It can be found in my videos or if you click playlists it is in the pd 101 series, if you want to know what else is out there meds wise! Dbs is a really big procedure and a big decision and its important to try that all first because none of this is permanent. Dbs is estimated to be really effective for 10-15 years at which time some people can see a drop off in effectiveness. So if meds can help for a little longer they should be tried. I absolutely love my dbs and am so beyond happy with the life it has given me but when i had it, it was really time. I was at a point where i needed so many meds i was having awful side effects. It was very much time!! So I guess the best summary of all of this, is to say I very much recommend dbs for the right candidate at the right time. Its a complex, long, and involved process but it is an often successful procedure that can really change someones life.

[@veerleaertsen626]

Wow Jasmine, very courageous! Question; does it impact your sight?

[@graflexmaster]

No, from my experience Parkinson's Disease, and more specifically, Juvenile Onset Parkinson's doesn't have any impact on sight.Parkinson's impacts motor control.... Like Jasmine, I also have Juvinile onset Parkinsons, and have had it foor just over 40 years... So I have a lot of life experience with it... be well Brigitte

[@jasminesturr6127]

Thanks Veerle! And Brigette, first off hello! Glad to see another JPDer has found their way here :) Well PD can make eyesight worse, I have bad genetics for eyesight from both of my parents having a high prescription, but in my 20s as it has supposed to steady out, it has worstened significantly. Not sure if my eyes are just slow to stop worstening (i am 23 now, and quite tired of having to get new glasses so frequently haha). I do have glaucoma but its potentially unrelated. As far as DBS goes, I have only had one Oculogyric Crisis since DBS (which is a huge quality of life improvement). That physically makes your eye muscles get stuck, its a fairly rare pd issue (i seem to accumulate rare side effects to pd). But that makes it hard to see from a mechanical point of view when it happens.

[@TomWalterTX]

I had an issue where I couldn't read! Frustrating as anything, as I love to read. I kept thinking "not this!". Turns out it was the muscles controlling the eyes. One side was working, other wasn't. Simple solution was do "eye pushups". Hold a pencil at arms length, focus on the eraser and bring it closer to your eyes. Once you lose focus, repeat. About 10 of those five times a day. A month later I was back enjoying my favorite novel!

[@toddalan6434]

40 years? Amazing. Were you able to get dibs yourself? Any advice you can give others with Parkinson’s? Sometimes it just feels like a death sentence hanging over my head. It’s hard to stay positive at times.

[@TomWalterTX]

Todd Alan I've met people who are still active forty years after diagnosis! Keep active. I'm been at this for some years.