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Wow dystonia sucks! It keeps popping up. You get one symptom tamped down something else changes. I pray that you will get some relief and that you get some relief from your symptoms 😢.

I had DBS for Focal-Truncal-Dysonia....the negative effects are I have a speech impediment, stuttering, and stammering all over the pace. Te pros have been less posturing and body movement.

Did you feel any post op head sensation? I Have GPI taget and I have this head sensation does not go away.

God bless you Jordan for sharing your experience to educate others. Believe in God, Jesus will RESTORE you.

Awesome and informative. Gracias.

My name is David a Olsen. I’ve had Parkinson’s since 2017. I get tremors and I get lately. I’ve been rocking back-and-forth when standing in the mirror shaving and brushing my teeth in the morning especially when I’m resting medicine helps but a lot of times I forget or I’m getting side effects from the medicine Movement disorder neurologist suggesting DBS I’m bringing my children my kids to my next appointment so the doctor can explain it all to them. My question is yes it’ll help with the kid with the problems I have now, but will it prevent them from all new problems from getting worse, thank you for your video. It was very informative. Thank you and stay strong and don’t let the Parkinson’s control you control the Parkinson’s thanks again. Stay strong.

Is the dbs still working for you? My kid has cp and dystonia. Seems like a treatment will work for a while but then not respond. She has a baclofen pump that worked at first now symptoms have returned,. Im very hesitant now to allow dbs.

Thanks I am getting DBS next month . I appreciate you doing this .

Jordan, i appreciate all you try to do for us! I am glad, however, that you are prioritizing yourself. I say that Dystonia is a very selfish condition, asking us to keep sufferin. But stepping back and allowing yourself to relax and feel better, concentrating on yourself is the usually the only way to fight back against Dystonia.

did u get dystonia from dangerous unnecessary psych meds

did u get dystonia from dangerous unnecessary psych meds

I have to truly try hard to write in cursive legibly. I can write in normal print fairly well.

I have brain damage in the left frontal and parietal loves, but against all odds I was able to complete my MA in history on Dec. 15. It was a miracle.

I survived a pretty bad tbi as a child and have had brain damage since because brain matter doesn't regenerate. I'm curious about the dbs because I definitely have been docile most of my life and have other problems with feeling understimulated.

Thank you! I am extremely happy for you. This cideo however has made it clear to me that I am steadfast in my desire to avoid DBS. Also ypu description of spatial awareness or lack there of was spot on and I deal witht hat everyday. I will use this info to be less annoyed at myself when I drop things or cut myself. Thank you so much. This explained so much to me. I will be better able to explain to my doctors why I deny having DBS now that I understand the pros and cons

Going in today, surgery tomorrow. Both sides and battery in 1 4hr surgery

Jordan, my heart goes out to you. God bless you, now, always and forever. Yes Jordan, a test of Faith, Hope and humility. Also Charity to those who don't understand what you are going through. May Jesus hold you in His Heart and Our Blessed Mother hug you tight.

🙏🙏🙏

thank you for honest results. my wife has to decide if dbs is for her. the thing that scares me the most is cognition possibilities of a 25% loss.she is forgetting alot now so she is progressing.

Thank you. ❤

I appreciate you sharing your experience. I’ve personally been trying to recover using brain retraining and psychedelics for about 9 months and think I’m now starting to surpass the results I could have gotten from DBS. My spine is undoubtedly a mess from dropped head syndrome but I am bothered by dystonia symptoms very little. I just did 2 solo backpacking trips and realized there’s absolutely nothing I can’t do physically even if it’s new and challenging at first. Some things I am doing better than before my accident like playing guitar. I’ve also hit new personal records on both squats and deadlifts despite my spine issues. They are little reminders that the healing is real and very, very deep. Seems like everything is coming back. At one time I thought getting this surgery was the only way to get my life back so I want to share some hope with everyone else. Glad to hear how much the surgery did for you. With the amount of success I’ve had recovering my body, I really do believe we will learn to treat dystonia without invasive procedures like this. I’m looking forward to a brighter future for us all! 😃

I'm really happy for your improvements 💚 I hope I will get there either one day...

Great Lecturer

Your Voice is so Relaxing 😊

Great information! My brother.. I am going for my second dbs assessment. I am 45, hard core athlete. Best shape of my life. I don't know if I should do this? My wife my mds say do it. Was your speech affected by dbs? My appointment is July 17

Maybe I'm lucky. I had my programming done a month after my surgery, had no problem with wires in my neck, and have full mobility in my neck. My essential tremors were severe...couldn't do anything like using utensils, writing, drinking, etc. I would shake I too death or not be able to hold most anything for any length of time. I had both sides done. I had my right side done first. After a month, they did the programming. A Boston Scientific representative and a neurologist did the programming together. It only took 2 appointments. I am very steady with this right side pouring from a pitcher, eating,brushing my teeth, etc. It has been life changing for me. I am to go for the programming of the left side in a few weeks. I am in my early 70's. I was out of it except when they woke me and checked leg, hand, and arm movements. Mine was done at Emory, in Atlanta, and they were wonderful. The surgeon was great and a good bedside manner. The neurologist and Boston Scientific people were very competent, and really knew how to fine tune things to get the desired results. Everyone during the whole process was very professional and kind.

Wow.. what a story Jordon..we do all have our burdens to bear…every day with dystonia is a challenge for me especially because I still work …with the public…I just never know how my day will be…It is about endurance and taking small steps every day…sometimes every moment to overcome my fear or anxiety..being comfortable with being uncomfortable….thank you for being you and this reminder we may be alone but really we are not alone as others go through living this particular disability. Bless you! Well said!

I will never try this again I tried it one time and after the second or third Zapp on my skull within about two minutes I got out of that building of got in my car and left it was the most painful experience I've ever had in my life and it did nothing for me but give me headache

I prefer ultrasound treatment dbs doesnt work for everyone im from united kingdom..

Which DBS device did you use?

My writing is so bad I used to keep a journal but can't anymore

Thank you for sharing this part of your life publicly. There are so many people looking for real information that you present here. We are scheduled to meet with a neurosurgeon at the Children's Hopspital of Philadelphia soon for my 9 year old son. His issues are a little different, he has a genetic epilepsy that has been resistant to all meds. He has on average 100 seizures a day....however...is normal in every other way amazingly. Again...I am grateful for you and sharing this.

Vwry good interview, you two! You share lots of information!

I am considering DBS to help treat my epilepsy. I already have an RNS implant that has had little effect on my seizures (4-6 weeks between seizures rather than 3-4 and I still often have auras daily). My medication keeps me from having daily+ seizures. My goal is to be seizure free, but that seems unlikely, as there is no cure. You talked about how DBS should only be considered when everything else has been tried. I'm in that position where I feel I should try DBS. You talking about the procedure being a small part of life compared to everything else we are capable of experiencing touched me. I am very thankful that you are expressing your emotional journey with information about your experiences. I have never known anyone else that has a neurological disorder besides myself and your videos I've seen have made me feel empathy and hopefulness rather than loneliness. Thank you!

I just found your video, and I want to say I found it very helpful. I went through the surgery this past November, and I am still getting past some of the hurdles. The pain in my neck was the hardest, I would have to say. One question I have, though, is I have been having some major cognitive issues with my speech, where my brain knows what I want to say, but it doesn't come out. Did that happen to you? Any advice would be greatly appreciated.

I am scheduled for my DBS in April this year. Is the headaches every day and have they gone away.thank you.

I know how you feel having tremor and it is horrible. I'm going to have this done but I first need to have a port that is on my chest removed (the port was for Chemotherapy) once that is done and healed I will hopefully be able to have the dbs surgery. I am so looking forward to being able to write again it has been about 11 years of hand tremor and has started also in my right hand, I have had head and neck tremors for approximately 30 years. I wish you all the best.

Thanks for the great video Jordan! I’m meeting with my neurologist this Friday and am going to pursue DBS for my Parkinson’s disease. Best wishes for your continued improvement!

Thank you for sharing the details of your dBS. It’s very helpful.

Coming to terms with a chronic illness or disability can be a difficult process. In my case and for those who have had a sudden and dramatic change in their ability to function, mourning the loss of one's prior life can be very helpful. It is similar to mourning the loss of a loved one, but you are mourning the loss of the "old" you. Once I went through the five stages of the grieving process, I was able to accept my new life and cope with its physical limitations. There will be setbacks in the process, which is normal, but taking the time to grieve is very important.

My brother is going to have this surgery done in 10 weeks. He's excited about it. Do you have any tips for him? He's 73 years old a and retired. Hopefully his turns out well like yours.

Oh, I am sorry I was unable to attend!

Thank you, Jordan. I love to be around water: lakes, rivers or oceans. They immediately make me feel calmer!

Hi,do have PD? I do

🤭 ░p░r░o░m░o░s░m░

Thank you, very informative. I have Cervical Dystonia and have been told to consider DBS. I will closely follow awaiting your next video.

Excellent video, Jordan C Hanson! I will share my experience by tagging on to this. I am 17 months post-DBS surgery. I agree with your pain assessment; the worst part was where the wires connected, but I do not have the headaches, luckily. My DBS was for Cervical Dystonia and has improved my tremors 100% and my tilt about 99%. I am still playing with my programming settings a bit. My body seems want to go back to the pre-surgery posture and that causes some pain. My hand writing has tanked which was an immediate side effect. My insurance covered 100% of the surgery. My experience has been so very positive.

Great video, Jordan! Thanks so much for sharing! 😊

I imagine the continuous symptom relief of the stimulation keeps your function at a higher level even with the stimulator turned off. I remember your symptoms being much more pronounced especially when you were tired. Nice video!

A video about how DBS surgery is done would be interesting!