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Dystonia Society
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I have been referred to the Psychology dept,who have suggested a 6 week course called Better living with illness. Has anyone been on this?

I am not keen on going without knowing what it is all about, I suffer with eye and Jaw spasms and get Botox injections. I find it hard to cope between Botox sessions with the pain and movement. I know have pain in neck and shoulder and i get head tremors.All suggestions welcome. I feel no one understands Dystonia

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Hi,

Not been to such a course but I would think it wise to contact them ahead of it starting to let them know that if they are planning to use an on the wall whiteboard to deliver materials you will need the same materials either in printed form or on a Tablet (IPad or similar or on a laptop) because looking up to access the wall board will exasperate your condition (particularly the eye spasm and neck + shoulder pain). If they can’t make that accommodation then go back to your referrer and let them know the course will be inaccessible to you and thus a waste of your time.

All the best

Ali

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thank you for your advise.

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Not heard of this but interested in what they are going to do ie. some sort of therapy such as CBT. This is not suitable for everybody. I find GP will refer one to therapy if you are feeling down but long wait. Also under NHS it is time limited. l too hav problems with my mouth resulting in eating and speaking problems. I am on a group at my surgery looking at mental health support so interested if you get anything from your course

Good luck

Tim

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thanks Tim

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Hi Tricia am just waiting to go for my next Botox two weeks to go and my feet are pain full. if I can get them in to warm water that really helps. But roll on two weeks

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Hi Tricia, hi w strange, 8 got a letter about 2 hours ago saying that i am on a waiting list for this same department so i rang the sender for further info as my dr is on holiday she told me it also covers occupational and physiotherapies! Im to To be assessed to see if I need help in my day to day liveing in and out of the home, hope this helps you? X.

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thanks Susan, The only info I have at the moment is it is a six week course. I am reluctant to sign up for it.

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I need to know all the ins and outs before I sign up for anything! I've got far more than dystonia to get my head around spine problems etc , no more than anyone else but you worry about getting things you've never heard of before, dont YOU? well I do lol. I've to have botox in my neck, does it hurt? And what us it supposed to do? Xx

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I only get the Botox around my eyes and each side of my jaw. I get a numbing gel put on around my eyes for at least 30mins to numb the area. I have a fear of needles. The jaw ones do hurt but they go in deeper.. Hope this helps.

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Oooh it sounds painful Tricia mine is cervical, so neck! My left shoulder was treated as a frozen shoulder for 2 years and apparently it's not frozen that too is dystonia! My arm just dangles can't even use it for the shakes and weakness? I'm wondering whether to go through with it 8r not? And as a result of the MRI to confirm this diagnosis, the Neuro man found a cyst between t6 and t7 got thatvtonworry about now? At least it isn't cancer!! X

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It is difficult to know what to do. I was not going to even try the Botox,but as I thought if I don't try it I will never know if I would get relief from the pain and eye clamping. . It is your choice if you go for it. Good luck and I hope your cyst gets sorted soon. Take care

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Thank you Trish. Take care too x

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Sorry my reply is perhaps too late. I have a neck dystonia and it has relaxed a lot due to my beginning meditation. There are loads on line but try what is known as a guided meditation. It takes a lot of practice and belief too as I believe in the fact we can learn to still our thoughts and therefore learn how to relax more. If this does not work I will be surprised as it starts a process of mind over matter to a degree. Also it is easy to be told relaxation helps the spasms but meditation is free in your own home and you have nothing to lose. Good luck.

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thanks for your reply.Can you tell me what to search for and what sites please.

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Hello. Yes I have just typed in Guided Meditations and found 2 I never knew of.

First one is under the heading of Tara Brach and there is a whole list of them running mostly at 21 mins or so.

I just sat through one of 20 mins under the heading of Meditationfornewbs. Its by women for women and I used the one called Healing Spirit for relaxation. Above that one was a 5 minute one. Now I shut myself in Phone on silent and you may well go sleep but its not a worry as the more you do it the higher your awareness becomes. That means your mind tunes in to a higher vibrational level and as it says in the meditations we can heal a lot with our minds. Really hope Tricia you have a go. I find it a big help. By the way as you get used to it you can choose your own medium ie bird song waterfalls etc. please keep in touch to let me know how you get along. Stick with it, it takes a while.

May I also say I did start with Betty Shine on youtube at 10mins each and you should see which they are. She had a most wonderful voice and knowledge.

Val

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thank you Val. I will give them a try.

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