I suffer from Dystonia. I've been told it's not a disability. Is anyone else in the same position?

donna_louise71

Hi my name is Donna I’m new to the group. I suffer from Dystonia an incurable chronic illness, I’ve been told it’s not a disability, anybody out there suffering the same as myself and could give any advice 
many thanks 

Tori_Scope

Hi @donna_louise71 Do you mind me asking who's told you that Dystonia isn't a disability? 

chiarieds

Hi @donna_louise71 - I'm rather surprised that you've been told dystonia isn't a disability as well, for as you say it's an incurable disorder. I believe you've previously mentioned it's cervical dystonia you suffer from, & it certainly appears you find this disabling.

We have had previous members with dystonia, but I'm unsure if they're still active on the community, unfortunately. Have you looked at Dystonia UK for some peer support? Please see: https://www.dystonia.org.uk/

Having said that, many of us here suffer from varying neurological problems, myself included, so you'll find an awful lot of understanding from our members. Please chat here any time, & join in with any discussions of interest. Please also let us know if you have any questions.

Ookpik

Who told you this is, it's not a disability. l suffered from this disability for 50 years. And, as the years went by, my dystonia just got a whole lot worse.  Mine is genetic. a certain gene l inherited on my Dads side. 
l have cervical dystonia, and it is segmental on the left side of my body. lt affects me greatly in life, and cannot do things l would love to do, which many people can do with ease. l find going out is a challenge, and can lose my balance easily. Some people thought l was drunk. But l don't drink.l have constant pain and terrible dull pains in my head every day, this disorder also stops me from sleeping, because of the involuntary movements of the muscles .l just cannot control the movements of my muscles. Not only is it a disability, but there is also a stigma attached to this. Boy, l can you a lot of what l had to put up with in life over the past 50 years. And to me, that is no doubt a severe disability. l get angry towards those who pass judgement on something they know little about. But, when you tell them. They say  negative things, which does not help
Of course, there are many types of dystonias, some are more severe than others. But to say, it is not a disability, is like saying PTSD is a mild form of a headache.[l am just taking this as an example] no offence to those who do suffer from this PTSD. 

janer1967

Hi and welcome to the community 

A disability as defined by the equality act is 

Any physical or mental impairment that affects your day to day life and is likely to last 12 months or more 

There is no such thing anymore of a list of conditions that mean you are deemed disabled as everybody is affected different by their conditions 

Digull

Hi,I have cervical Dystonia,I've had it over 20 years,I have Botox about every 3/4 months which takes the no no tremor away but not all my symptoms,I take 0.5 of Clonazepam when needed before bed,are you in any medication for it?

Ookpik

Hi,

l find this rather odd for a diagnosis of dystonia being classed as "Not A Disorder" whereas mine has been classed as a disorder. l have gone through the proper procedures of qualifying for DBS[Deep Brain Stimulation] and now l have the implant,l still have another year of being monitored by the NHS personnel on how to get the right adjustments for me to do things daily where others without dystonia view it as a normal daily way of life. And if that is not a Disorder, then l think that should be questioned. There are many different types of, Dystonia, Mine is Cervical Dystonia. Now,l am back from a long absence from this lovely forum of friends. l will one day type away my whole experience what l went through

Angel661

I have Cervical Dystonia and it is very debilitating.

I travel to St George's in London every 3 months for EMG guided Botox which takes the edge off of the symptoms.

Donna do you have any treatment for yours?

I'm also looking for a consultant nearer home ( East Sussex).

Does anyone know of a Neurologist who does EMG guided Botox in my area?

Where abouts are you Donna?

Ookpik

During my time of me going through the ongoing procedure of a DBS implant, was a bit of a trauma for me. l have to admit, l was scared because this operation is implanting ting wires underneath the "Basal Ganglia gland that controls the movements of the upper body l have been suffering from for many decades now. The first part of the procedure l was going through was, to see the many NHS staff to see if l was fit enough for the operation. l saw the Doctor, Neuro doctor, psychiatrist, and many others, and passed on all accounts for the operation to go ahead. My next referral was to have a brain scan, but with my constant spasm, l kept on having, was impossible for me to keep my head still. But, l was reassured by the Neurosurgeon l would be under an anaesthetic. so far so good during my ongoing journey to the final day. Which l am still dreading. But, l had to reassure me everything will be OK.Well!, that day to have a scan came, and lt was great, nothing to worry about at all, and the nurses were top rate in their job, After the op when l woke up from the anaesthetic, my first words were. That was the best sleep l had in decades. The whole medical team laughed at that.Now, the next phase was the pre-op to check my blood pressure and other things etc, to see if l was fit for the op to come. And l passed with flying colours. l suppose these daily 4-mile runs l do, and situps, pushups, no smoking, and no alcohol did help me to pass the pest . Even the nurses were impressed with my fitness appearance, and at a person going on 71, l think, whatever age one is, it is never to late to get fit. And working out daily does keep the spasms at bay as well.Well!, the day has finally arrived for the major operation to take place. And all seems quite pleasant. The staff were very friendly and put me at ease.lt didn't take long for me to go into a deep sleep from this drug l had to inhale. And when l woke up, it was all done, like nothing had happened. But according to the surgeon who operated on me, took just under 2 hours. After that, l was carted off into a ward to be cared for ,l lost my appetite for a day. And when the drug started to wear off, l got my appetite back.l was in the ward for 4 days. And was tested by the staff if was fit enough to go home.l wasn't. they asked me questions on when was born, and my name etc, l didn't know what my name was, and when l was born, but as time went on, l did answer them properly and off l went back home, which seemed very strange to me, when l step into the house, with my wife.Well, that is mainly about it. So, if anyone is worried about the DBS operation, all l can say on this one, is there is nothing to worry about, the staff are good at their job, and they will do everything they can to make you feel at ease.l will continue with this story later on , once my fingers have stopped hurting from typing..

Ookpik

Hi,

Just adding on, where l left the previous comment of mine on "Cervical Dystonia". When left the hospital ward for homeward bound. l was given, a telephone appointment for a year to see how the right adjustment would suit me. So far so good at the moment. l still feel my neck muscles pulling my head to the left. and the spasms have eased, but are still there. l am still going through the telephone consultation treatments with another 2 more telephone calls left. After that, our appointments with the neurosurgeon and other members of the NHS to see how l feel and to make the proper stimulating adjustments that would

cervical dystonia.jpg

suit me in daily life. l have posted a picture of what cervical dystonia is. This is the last hope for me, to get this disorder under control. l suffered for more than 50 years now, and l do hope this will be the one that will make me enjoy life

FeistyPigeon

https://forum.scope.org.uk/discussion/83657/i-suffer-from-dystonia-ive-been-told-its-not-a-disability-is-anyone-else-in-the-same-position

Hi Donna, thank goodness there is someone out there with the same condition as me! At least, I've had cervical dystonia since adolescence, the typical wry neck symptom that used to be very painful. That virtually disappeared when I was about 26 or so but since then have had neck tremors that have got progressively worse + now spread down my writing arm, so can't write anymore. The neck tremors can be pretty bad too. Very socially inhibiting + sometimes stop me sleeping at night, or wake me up. And so frustrating NHS is so slow to do anything about it. Appointments take months and months, very often lead to nothing, and in the meantime you're just expected to get on with it.

Don't let anyone tell you it's not disabling Donna, it really is, unless you're one of the lucky ones in which it disappears. One of the biggest problems is the lack of awareness amongst health practitioners. Most research goes into parkinsons, very little into dystonia. Having said that, some good research has come out lately. In London they've done a study that shows it can be caused by spinal injury. Another cause can be genetic, and there are tests to identify if you have one of the mutations they've identified for this. Could be other causes too…

Best of luck Donna, let us know how you get on…

FeistyPigeon

Hi Angel and Ookpik, I read your comments after answering Donna's. So good to hear the experiences of others having the same condition, thanks for writing. I think you were really brave Ookpik, don't think I'd have the courage for DBS, not yet any rate. Also tried botox, like Angel, but reacted badly, think I might have an allergy to it. Waiting for another neurologist appointment, going for Oxford this time. Will late you know if anything comes of it. Take care xx