Rubbish. In the UK the Neurologists don't even understand Dystonia. I would say I've been in hospital on numerous times and the Dr's and Nurses haven't even heard of Dystonia. Let alone physiotherapists. I was reffered to a speech therapist and they just shrugged their shoulders as no-one in the department has ever heard of Dystonia. No help whatsoever anywhere, just given brain meds and botox. Disgraceful
Meds and Botox is profitable. Re-wiring the neurological map of your brain isn’t. Unfortunately. I didn’t get any better treatment in the US than the UK though. But it was a lot faster and more efficient. And you have more time with your neuro there. Unless you’re a very good candidate for DBS don’t expect anything more
Not much better in the USA...I've had dystonia for about 10 years now...at first, my GP thought I had a sensitive carotid artery and believed I could just "feel" my blood pumping. Several years later, my neurologist knew exactly what is was. Botox isn't helping...looking to try massage therapy. I am a huge advocate of acupuncture and find it helps for most things but unfortunately, it has no affect on my CD.
UK physiotherapy says Dystonia is a phenomenon and they don't know how to treat it. I've had it my entire adult life and I know what I need. My GP said I just walk funny, it's quirky wtaf is that attitude going to do for patients struggling with mental health, safe to say suicide isn't a answer, tried that and failed after 4th attempt. Can't even do that right 😕 neuroscience don't want to know because this condition pushes the fundamental science of neurology and physiotherapy because of the systemic brain patterns that need rewriting. Its not complicated, just a very complex topic as it affects the entire body.
Hey Clair I’m so sorry to read that you had been brought to such slow point:( I’m a 27 year old with dystonia as well and I’ve definitely contemplated due to the fact that it affects every aspect of your life. Super sad that there’s such a lack of knowledge about things that help. I truly believe a lot of it has to do with the spine, jaw, and vagul nerve. If you need to talk I’m here! Message me
Hey Clair I’m so sorry to read that you had been brought to such slow point:( I’m a 27 year old with dystonia as well and I’ve definitely contemplated due to the fact that it affects every aspect of your life. Super sad that there’s such a lack of knowledge about things that help. I truly believe a lot of it has to do with the spine, jaw, and vagul nerve. If you need to talk I’m here! Message me
I was an incredible weight lifter before the bad accident that brought out generalized dystonia. It was a struggle to get out of the twisted ball but once I graduated from learning to walk I quickly was able to do a push-up and I got a gym membership the same day! I have so many incredible memories of being awesome at the gym that it’s left the dystonia powerless. It was a little weird coordinating movements at first but my body want to lift the weights so badly it finds the reasons it can’t and fixes them on the spot. I feel incredible when I lift weights… as the muscles tire I dig deep and suddenly the weights go up easier and easier with reps until the weight just doesn’t move and I know I’ve reached failure. When I walk into the gym something comes over me. I feel the world change as my perception of myself shifts to that of a champion in the realm of Mike Tyson. I become the baddest specimen of a human as I chase down the dystonia and wear it down into submission. I found that little monster the other day running on a stair mill with both my heart and the machine at near max. It showed up as the voice that tells you your having a heart attack and I brought my mind to where it came from and took control… pushing my body at that capacity for as long as it felt safe to and since then I feel like a new person. My body’s putting my whole skeleton back together. Simply laying in bed I feel the dystonia basically falling off my body like it’s fleeing from my mind. I think physiotherapy offers a ton of potential healing but I will say you have to learn to accept unimaginable pain when you are starting but after that you start going into the pain instinctively and undoing the pain response everywhere you find it. Best of luck to everyone!
Hi dr hi whean tell because my problem neck problem after surgery scoliosis my posters new my head cramp and muscle vekenas full body go to poster back normal how can do dr.ples pls help me.
