I have to thank the Dystonia Society for the great video from Dr Marie-Helene. As a Dystonia sufferer myself I know through experience that it is a condition that can be painful and, at times, frustrating. I have a specialist and have for many years. I take medication in moderation and have botulinum injections to help. It took years before I did my own research and realised what had been holding me back. For those years I thought I was going mad. I could not control certain muscles and the pain was hard to take. I know there will be people right now who will be searching for reasons and cures. Well if you come across this blog please use these links and do not rely on you GP. Get transferred to a specialist and remember that you are the artist of your own actions.
The Dystonia Society
Cervical Dystonia Support Forum
UK Support Group for Spasmodic Torticollis
I've written on this subject before and that blog entry can be found here.
The Dystonia Society is one of the best resources on the Internet for sufferers. It promotes the condition and raises much needed awareness. They recently asked a leading neurologist a number of questions as shown in the video below. I have also included a fantastic film called Dystonia Devin depicting the effects of the condition. It is very inspirational to those of us that, through adversity, try to stay positive.
Dystonia Q+A with Dr Marie-Helene Marion from Dystonia Society on Vimeo.
We have put some of your questions on focal dystonias and botulinum toxin to neurologist Dr Marie-Helene Marion. Thank you to all those who submitted questions - unfortunately due to time restraints we have been unable to ask all the questions and we have grouped some questions together. If you still have questions please do contact our Helpline on 0845 458 6322 or by emailing firstname.lastname@example.org
So that you can find individual questions easily, we have included the timings for each question below:
0.00 - Introduction
0.58 - What causes dystonia in adults? Can any vaccines, peripheral nerve damage, the menopause, surgery have any affect?
6.18 - Does dystonia spread? If so are there particular parts of the body it spreads to and from?
7.53 - How long do the symptoms carry on getting worse? (including info on whether dystonia ever goes away)
11.33 - I understand botulinum toxin is a type of poison? Is it safe?
13.34 - Can botulinum toxin be used during pregnancy?
15.15 - Is there a way to avoid side effects from botulinum toxin (such as pain at the injection site, swallowing difficulties, blurred vision)?
18.51 - How can I manage pain in dystonia if it is not managed by botulinum toxin? Is it ok to take pain medication long term?
20.35 - Why is botulinum toxin not working? Might this be because I am immune to the toxin?
28.46 - What should I do if botulinum toxin is not relieving dystonia tremor?
31.49 - Is artane (trihexyphenydyl) helpful? Is there an age limit for taking it?
36.46 - Can physiotherapy or mind retraining help?
29.08 - Might diet or complementary therapies help to manage dystonia?