Hi Karen, sorry to hear that your mother has been diagnosed. We have a section on our website designed for people newly diagnosed with Parkinson's which includes a video www.parkinsons.org.uk/information-and-support/newly-diagnosed-parkinsons?gclid=EAIaIQobChMIudb1j_Wa4wIV2oTVCh2p1gUoEAAYASAAEgIQYfD_BwE&gclsrc=aw.ds and if you're based in the UK we have a helpline for both you and your Mum on 0808 800 0303. Hope that helps and best wishes to you.

Please tell me how you managed to get better. I take care of my Mother who has very severe Dystonia and Parkinsonism. She has gotten all twisted now and it absolutely breaks my heart seeing her this way and she’s really suffering it seems. Please any advice or help will be greatly appreciated!!

@@danielalvarez-galan3702 ho boy this should be fun to write ✍️. There’s a lot coming lol. You gotta get your mom to take the red pill and wake up on the other side of the matrix! Get the brain to try something different and it will happily forget the bad movements. The difference between symptom relief and recovery is mindset. First things first I got off benzodiazepines and all other RX drugs besides marijuana about a year ago. Getting off the benzos brought tons and tons of healing to my brain. I tried taking gabapentin but it just made me feel gross per the dependency. I think it was telling my body that it was never ever getting drugs to feel better again that got the ball rolling for me. Other neuro conditions that I have seen miraculous recoveries from, I have noticed a big trend in people getting off meds at the beginning or during the journey of healing. Always consult a doctor, but I don’t think meds make any sense for dystonia. I might as well tell you the truth. I tried ayahuasca at the beginning of the recovery on a couple different occasions, always using very little. And oh my word it worked on levels I didn’t even know I was broken. It was what made me realize it was ME creating the illness. On one of the early trips I stood in front of the mirror and asked myself why I shake, why I hurt etc and noticed I had no conscious control of the right side of my neck where the dystonic signals were coming from. My brain started rebuilding my connection to my neck that night. The revelations I got from psychedelics permanently changed the pain and tremors into something I could work through. Any time the pain started I would remember I was the one creating it and it started to get very dull til it went away shortly thereafter. Maybe a month. It wasn’t the real healing but it was a huge change. Both my therapist and my father asked what I had done that I was just okay within a few weeks. The real healing was that I learned my brain has all the answers. I knew I could get back to the same place on my own so I started daily meditation. Very quickly I started having out of body experiences that were all Taylor made for me to heal from dystonia. Literally the first time I found myself in that world I was practicing driving and noticed my vision twisting instead of my body. I was able to drive out of town with zero issues a couple days later. And my brain figured out there was a problem with my vision and got to work on it right away. Pro tip, I put a strip of glossy scotch tape over the inside of my glasses lenses and ohh my word having a visual aid for where center was made a huge difference. I have no idea why doctors don’t tell you the stuff you need to know. Meditation has by far become the most powerful tool I have found to find the dysfunction and replace it with new information. The mind is very clever and is 100% capable of healing the problem, it just has to be able to find it. My take on the psychedelics is they just helped me believe it was plant medicine making me better when it was too hard to understand it was ME doing the healing. They made me open to the idea that my thoughts could heal my body and showed me the pain and tremors did not need to be so severe, but I am confident I could have learned this without their use. If anything they showed me how to meditate. I really do see psychedelics as a catalyst for healing. Of course.. never break the law 😃 The truth is there’s lots of hope for your mom but there’s no single pill or therapy that will do the trick. She has to learn to heal. Dystonia is a bizarre disease. For me it’s like the personality I had for the first portion of my life is utterly unable to use this body... still to this day it’s like my life force got scrambled up. Healing from dystonia is all about building a new you. One that doesn’t have dystonia. And one that can create body parts that work with the mind. I found a guy named dr Joe Dispensa here on KZfaq. He has this crazy story of healing his broken back with his mind. As in building a new back with his brain. Would have said it was bs if my own subconscious hadn’t appeared in physical form to me and shown me how to create new bones and tissues with my mind. I don’t really care that it’s weird, it’s working lol. I have listened to many of the testimonials from people that try dr dispensas meditation programs and find miraculous healing themselves. I just listened to my mind and somehow it knew it could do this without ever being told. I would above all other therapies say meditation has the answers for dystonia. I’ve also been aided greatly by so many things. Of note is my medical marijuana card, greatly increased motor control for me. This massage gun I’ve been using is pretty awesome for busting out of stuck postures too. Red light therapy at planet fitness really helped me reconnect with my body in the beginning. That’s when I first started getting smooth motion. Ayahuasca as I stated earlier led me straight to where I needed to go. Hypnosis through KZfaq videos was also excellent, I learned to hypnotize myself and reprogram the default mode network to follow new commands in about just 1 week. Pretty cool when you hypnotize your shoulder to stop having dystonia. Talk therapy has also been very helpful. I know cuz my counselors not even very good and it still helps me leave behind the dystonia. I actually just started going less, not sure if I even need to go any more. I used to spend a ton of time stretching and do not any longer. Not enough pay back for the pain involved. I also do really well with HEAVY weight training. But it only works because I’m so motivated to do it. Chiropractic may also offer a lot of benefits. I’ve had trouble confirming this but I have heard dystonia comes from misalignment of C1-C2. What I have heard is the dystonic signals work their way down and the better aligned the upper cervical spine is, the less dystonic postures will affect the body. This has been very true for me personally. I never could find a very talented chiro but I had reasonable results having one do very conservative adjustments. Of note, he actually stayed away from my neck and tailbone where the dystonia was very severe and instead worked on aligning the adjacent areas. This is how my brain has me get back into alignment as well. I think my brain just gets too confused if somebody actually adjusts my neck. So that’s a long way of saying you just gotta get mom doing a different routine with her body and mind long enough for her to heal. The second she wakes up and gets her bearings, her brain is telling her she’s sick and remembers how to be sick in her environment. If she’s willing to make changes to get better that’s all you need. Have her do something new and stimulating first thing in the morning to remind her she’s getting better. Personally I dance every morning. I’m not good at all but I enjoy seeing how much better I am than the day before. Try and figure out a spiritual and physical discipline to do every day. Think about her day and see if you can find a way to bring more joy into it. Realize it’s the person that needs to heal as well as the brain and body. Wholesome love is the best medicine. And don’t forget about yourself. I know it had a pretty rough effect on my parents watching my collarbone strangle me. Please do take time for yourself each day and don’t let yourself sink into despair. I also know first hand how hard it is dealing with a parent with a disability. Truly, all the things that will help your mother, I recommend for you too. You gotta be the healthy body for your mom to emulate. You gotta make sure your carrying your chin up high for her. Really, make sure you’re doing well yourself. I figure if youre searching around the KZfaq’s comments... it’s a wits end time in your life. It is stressful, it is a big burden, so make sure you don’t forget to live in the present. Find joy each day, be still when things feel out of your control. Definitely check out YJ Care Clinic here on KZfaq. They’re a group of doctors in Korea that provide footage of many, many patients recovering from dystonia. Their videos really helped my faith in the beginning. I have no doubt you can see some really awesome improvement in Mom in a very short period of time. The full recovery takes most people 6-24 months but big improvements come fastest at the start! It’ll be a journey for sure. Feel blessed to be part of the process, you must be a very excellent kid. I left you a lot to read but if you want any more information please please please just ask. It was so hard figuring this all out myself but I swore I’d do it for those that haven’t recovered yet. If there’s anything else I might be able to provide, please just let me know. Peace, blessings, and a whole bunch of crazy stupid courage to you both ✌️

Update: holy smokes I’m all the way better! Psychedelics worked!!!

Matt Caponigro I can attest to having dystonia and TMJ. Symptoms for both flared around the same time. There is a connection with the vagus nerve for sure.

Interesting you say that

Any suggestion on who to consult professionally, in order to decompress and balance the TMJ? Would this be an osteopath?

@@user-qi1te5gj7k a dentist who treats neurological disorders. Dentists who use alf appliances are typically good and a lot of them work directly with osteopaths. The osteopaths will help with realigning the cranial bones but if your tmj is collapsed you're going to need an appliance to add some space.

@@mattcaponigro72 Thanks!

Judy Vansickle Where do you buy it? My mom has severe Dystonia and nothing has helped 😭