• Hi. It’s great to see you. Welcome!

    Our forum members are people, maybe like yourself, who experience mental health difficulties or who have had them at some point in their life. Amongst our membership there is a wealth of expertise that has been developed through having to deal with mental health issues.

    We are an actively moderated forum with a team of experienced moderators. We also have a specialist safety team that works extra hard to keep the forum safe for visitors and members.

    Register now to access many more features and forums!

Campaign on Conversion Disorder

T

tinkerbell007

Well-known member
Joined
May 23, 2010
Messages
211
Thanks for that, I also have had this problem and am have moved so hopefully the new docs I will be under will be better.
 
Y

yellowted

Active member
Joined
Jan 23, 2011
Messages
44
Location
UK
definitely DLA is given for conversion type disorders, mine has just been upped to high rate mobility and highest rate care, also have just heard that Adult services are finally going to support an application for a DFG (disabled facilities grant) to adapt my home, after fighting for it for 2 and a half years!! what swung it was evidence that it is often a long term substantial condition, recruiting an IMCA advocate, me putting in a formal complaint for neglect of human rightsand discrimination based on diagnosis, and me talking direct to the head of mental health services for my area!!

moral of the story, keep fighting, you will succeed eventually

good luck x
 
T

tinkerbell007

Well-known member
Joined
May 23, 2010
Messages
211
My consultant filled in the original questionnaire wrong and they said i was entitled to nothing something i am appealing but it will take about two years for a hearing. So i have had to reapply as i have gotton alot worse. do you have any advice for me at all. i have alot of sersious syptoms i.e blackouts without notice movement problems. who are the IMCA also sorry for asking but im at my witts end and i feel like giving up because they are making my life difficult.

Thanks
 
Y

yellowted

Active member
Joined
Jan 23, 2011
Messages
44
Location
UK
my advice is to fill in as much of the form as you can yourself, you know your individual difficulties and how they affect you, your consultant only knows your dx.

never say what you are like on a good day, always put down your worst days.

put in every detail, use more paper attached if necessary.

put in all the help you need not just the help you get.

be as honest as you can, do not say you can do things which you struggle with, tell them it is difficult!

with regards your blackouts, make them aware that you need someone to be around/help you in the night incase you blackout going to the loo,
and during the day to keep you safe as blackouts can happen when crossing the road, carrying hot liquids, retrieving things from a hot oven, on the stairs etc.

mobility problems - you need help to clean your home, carry shopping, hang washing, assist on stairs/going out, ......etc.

IMCA = independant mental health ??capacity, consultant, capability?? advocate, mine is from POHWER they have a few offices around the country, but there are other advocates who are trained in mental health cases. i would suggest asking if they are imca trained as that is the best m/h advocacy training around.

do you have any help at all? friends, family, council paid carers, financial - benefits? I ask as there are loads of things you are entitled to
Direct payments - these allow you to choose your own carers, help with socialising etc
benefits are changing so you need to ask your citizens advice beuro about these
blue badge-can be got without DLA mobility certificate by getting doc to complete part ofthe form
help with taxi fares (taxi card or voucher schemes are run by every council)
disabled persons freedom pass helps with travel on public transport,
disabled rail card gives 1/3 off longer rail fares
cinema card gives cheap cinema access
swim pass - through your doc/council, gives free access to local pools for you and carer
ask your local council what else is available

you can get home eye tests,
help the aged have a handy man service which disabled people can use too, it costs but is not much and is very useful

good luck x

if you want any more info or are struggling with forms let me know and i will be happy to help

Take care x Ted x
 
T

tinkerbell007

Well-known member
Joined
May 23, 2010
Messages
211
Thanks ive PM you.
 
A

aspegirl

New member
Joined
Nov 19, 2011
Messages
1
Hello Bonica
My first time on here but was hoping you might be able to help.
After ruling out a stroke I was diagnosed with conversion mutism.
I'm looking for a support group in the UK. You mentioned carer watch.
What is this and can it advise. I'm a full time teacher of the deaf so thankfully can sign.
Any advice or pointing me in the right direction would be a relief. I haven't found anyone else with this mutism.
Many thanks
 
B

bonica

Active member
Joined
Aug 21, 2010
Messages
37
Hi aspegirl.
Sorry to hear you have CD. In answer to your question; they're not a support group. They campaign on disability & carer issues.

Unfortunately there aren't any UK support groups for CD, only online groups such as this one & psychforum.

Regards.

Bonica.
 
T

tanya68

New member
Joined
Dec 10, 2011
Messages
1
tanya68

hello, if anyone can help me i will be very much appreciated as I have Conversion Disorder and feel very isolated and every day get a new sypmtom. My body goes as if it is having an epileptic attack but of course its not. Some times it can last for half an hour to an hour but then it can go on for 4 to 5 hours, this is very new to me and the same as people with CD becomes very scarey, I think my husband thinks im going to be well soon as i do and be back to work in a few weeks. My doctor has put me off work for 3 months so now i only get SSP. Now I have to leave the house in a wheel chair as my legs give way. I dont want to loose my independance and at the moment i still have my driving licence but of course theres no way i can drive but am also afraid of not recovering and having it taken away from me. Any advice will be greatly appreciated.
 
B

bonica

Active member
Joined
Aug 21, 2010
Messages
37
Hello Tanya.

Sorry to hear what you're going through. My son used to have epileptic type fits that lasted for 4 or 5 hours so I understand how scary that can be for you & your hubby.

I'm not well enough to write much tonight but I'll try to answer & I'll PM you as soon as I can.

I know it's easier said than done but just take it one day at a time & try not to worry or focus too much on work, driving & recovery right now.

You're going to have good & bad moments so watch things, do things, read things & listen to things that make you feel good, make you laugh & inspire you. It'll help balance the fear & worry that comes with having CD.

Do what you can when you can & rest when you need to.

Take care Tanya
 
T

Twitcher

New member
Joined
Feb 2, 2012
Messages
3
Location
Shropshire!
I'm 21, and i was finally diagnosed with Conversion Disorder when i was 17 and a half after a year and a half's worth of medical investigation. I have what my Neuro-Psychiatrist says is one of the worst examples of conversion disorder he has ever seen. My triggers are usually social and emotional situations that other might not feel stressful at all, and the way it was explained to me by various experts was that my body and brain cannot cope with emotions whether it be happy/sad/angry/annoyed everything. As soon as these emotions start to build up, my conversion disorder kicks in... what i struggle with is that i don't under stand emotions or social situations because something about my CD protects itself from what it sees as 'harmful'. I have 'twitches' that are not localised on my body, i have had my legs taken from under me when walking, i have seizures, i have been a vegetable in a hospital bed paralysed, no speech, no swallowing reflex, and my left arm unusable. I had to have 24 hour nursing because i could do NOTHING for myself, eventually that episode got better but i know with certainty that it will come and go as it wants to. Especially as i twitch daily and life can never be without some emotion :) The one thing i have learnt though is to never give up, evening from my hospital bed i carried on with school, i have made it to university and i am about to graduate, because thankfully my eyes have never been affected. And that is something to be thankful for.

The point i am trying to make is that if i didn't have the DLA, and the limited help i did and do have i wouldn't be where i am today. I am one of the lucky ones where once i got through the god awful NHS GP's and the medical prodding and poking they literally had nothing else to throw at me, they HAD to send me to the best because i was so ill. In a way i'm glad i had the worst because it made them take me seriously. I think anything less and i would have been shoved to the side like so many. And thats what is so sad that those who have terrible symptoms, but that are seen to be less life threatening are being shoved to the side and told to get on with it

@Bonica, i am more than willing to help in anyway i can :)
 
K

Klou123

Member
Joined
Mar 30, 2012
Messages
10
Location
Guildford
dmd conversion disorder

Hi bonica. I had exactly the same as what you have and I have been looking for other people with it also for 5 years. I also get paralysis of my legs, face and left arm. I don't experience them all at once which in grateful for. I faint under stress and fit whilst i am fainting. I am 24 and have had this all my life according to the doctors scale timeline of my bad health. What treatment have you had?
 
K

Klou123

Member
Joined
Mar 30, 2012
Messages
10
Location
Guildford
tests

Hi. I have dmd cd and I was only diagnosed 3 years ago. With regards lumbar puncture this tells you nothing. All I can say is that it is extremely painful to have. I was in hospital with no legs to use as this was sudden and my doctors were worried. The lumber puncture told them nothing.
 
Top