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Support? In The UK??

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Support? In The UK??

Postby mcintyre » Fri Jan 05, 2007 8:17 pm

Grrrr!! Just wondering where the support is for CD sufferers in the UK?

THe MS'ers have their support systems, the Cancer people have theirs etc etc but CD has nothing. Not even MIND acknowledge it.

I was diagnosed last September and am more or less unable to walk now, along with various other problems, and I have had not one ounce of support or help from anyone in any way shape or form.

Grrr I feel like screaming!
Dan McIntyre
"Those who say it is impossible should not interrupt those who are doing it"
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Postby roselight » Sun Jan 07, 2007 4:19 pm

Hi Dan.

My son has it too. He's 21 and we are experiencing the same problems. Conversion Disorder/Functional Neurological Deficit Disorder, is a little known and much misunderstood condition, hence the huge lack in diagnosis and appropriate referral and treatment.

Support groups are generally organised by those who have experience of any given condition.
I would be very willing to start one, but have several obstacles to doing so. I'm already campaigning re: education for those with special needs and to stop the closure of my son's college. Being a lone parent, this leaves me little time or energy to start up a much needed support group for CD sufferers....yet!
That said, I would be very happy to speak with anyone with CD if they send me a private message with their phone number.

My son has various disabilities that we both cope with very well by accepting them, working with them and most important of all, focussing on his abilities and talents, of which he has an abundance. He is also a lovely young man, sensitive and compassionate.
Conversion Disorder is another story however and its far reaching effects has drained us both, though we refuse to be beaten by it, or by the system that ignores the devastating impact on lives and the isolation and depression it can cause.

Due to my son's disabilities, the effects of CD have been very long lasting. Hence I understand what others go through in dealing with the symptoms and the frustration of lenghy and inadequate NHS proceedures...or the lack of them!

AS of May 2006, patients can ask to be referred to a hospital of their choice. In our case, they can no longer refuse to refer my son to the National Hospital for Nuerology in London.

I wish you all the best Dan, and please don't hesitate to PM me your number if you'd like to speak to me about this.

roselight :)

PS. Love your signature! It speaks volumes about your attitude to life and re-iterates my own. Life is rife with possibilities :wink: and you WILL walk as you did before. Keep the faith.
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Postby mcintyre » Tue Jan 09, 2007 2:36 am

THanks for your reply, sometimes it feels as though there's only me that reads this board!!

My attitude to life is pretty much summed up by my signature but it took a long time to get to that point - I spent 3 years ignoring what was happening to me and even when my problems disabled me last year I still spent a long time thinking I'd get better soon.

Now I'm struggling but still going.

Yesterday I had to speka to a lady at social services who told me "mental health problems don't cause people to be unable to walk" at which point I explained a few things about CD to her and explained that it had taken a long time for me to come to terms with it and for her, a "lay person" as she described herself to tell me that was more than annoying.

THat all came about because social services have twice refused to issue me with a blue badge to enable me to get around and be as independent as possible, simpl because im not claiming DLA.

However I have now submitted a claim for DLA as it seems it is the only way I'm going to get the help I need from time to time.

Does your son have problems constantly? Everything Ive read about CD states that symptoms disappear quickly, usually after 2-3 weeks, but I've now spent a year unable to walk, having various co-ordination problems and sometimes unable to speak as well. These problems are constantly there and I use a wheelchair most of the time now, not your classic CD case.

Take care and hope to talk sometime.

Dan
Dan McIntyre
"Those who say it is impossible should not interrupt those who are doing it"
mcintyre
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Postby roselight » Tue Jan 09, 2007 11:50 am

Hi Dan and thanks for your reply too.

I've got a lot of campaign work on today, but I'll write more later or PM you with my number (or vice versa) so we can talk. Sometimes that's easier for me as it gives me a break from writing.

Have a good day.....or a BRILLIANT one if you can!

roselight
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Postby nola » Thu Jan 11, 2007 1:56 pm

Hi there, I just Id just reply here as im in the UK too. I think I have been quite lucky really as most people seem to have accepted it, even if they dont fully understand. Im having CBT at the moment, just to see if it can help me. Its quite nice just being able to talk to someone who understands the condition and listens to everything I have to say. I think it might help me in the long run. Dan, it sounds like you have nobody that understands you, and thats terrible. I dont know if its possible, but see if you could be transferred to see a neuropsychiatrist. I was, and he arranged the CBT. He was also very understanding and tried to help me see what aspects of my life can cause problems for me. I also have had social services provide an electric bed, rails on my stairs, support handles in the shower etc and have even had carers sent to my house when my mum is unable to look after me. So if I can help you in any way, maybe finding out what exactly your entitled to, ill try!
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Postby roselight » Fri Jan 12, 2007 1:12 pm

Hi Dan. Hi Nola, nice to meet you and I hope CBT helps you.
It's definately one of the more effective and short term therapies and helpful for people who don't want or can't talk about past trauma.

Long term counselling that requires talking about past suffering can be very detrimental for some.
The European Therapy Studies Institute has done a huge amount of research into the wide variety of therapies available and recommends Brief Solution Focussed Therapies such as CBT and Human Givens Therapy. I'll post the links to these websites, though a Google search will point you to them.

It's very interesting stuff and I was led to it all because my son freaks out if he has to talk about past trauma and the painful emotions that come with it.

CBT is available on NHS, Human Givens Therapy isn't, but if you're on benefits, tell them and they will arrange something with you.
The same goes for Hypnotherapy, but you will need a good Hypnotherapist who specialises in mental health problems. Some Hypnotherapists have adapted an NLP technique that deals with trauma/anxiety/phobia; and it's known as the "Swish Technique"
The best people I know for this, are to be found in Brighton.
Of course, not everyone can get to Brighton, but there's a great deal of free help and stuff you can download from their website, as wel as a forum that may be of help.
Mark Tyrrell and Roger Elliot are the guys who run it and they also run Hypnotherapy courses.
Mark helped my son enormously a couple of years ago but unfortunately we had to stop going due to a car accident and...well, it's a long story that ended up in me with no car to get there, no money and me too injured to do much about it. I'll be taking my son back there asap though. The difference in my son at that time, after just a few sessions was incredible.
Their website is:

http://www.uncommon-knowledge.co.uk

They incorporate Human Givens Therapy and the Swish Technique in their work and are genuinely very compassionate guys. Mark used to be a Psychaitric Nurse and mental health is close to his heart.

Cranio Sacral Therapy is also worth checking out, as it can help release stuck emotions without the need of talking and re-living the painful memories.

There's also a lot of very simple stuff you can do yourself at home, but I'll come back to post those self-help techniques

Dan, your own GP can also refer you for CBT if you don't have a Neuropsychiatrist.

Later.....

roselight
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Postby mcintyre » Sun Jan 14, 2007 7:09 pm

Thnks Rose and Nola...

No I've not seen a neuropsuchiatrist, though have seen a neurologist who decided within 5 minutes that i had cd and referred me to psychiatry, my company paid for me to see a psychiatrist privately who confirmed the diagnosis of cd.

I also found it hard to talk about past life experiences.

I'm struggling at the moment just getting about - I've even had to apply for council housing as my lovely ground floor flat is not wheelchair accessible at all and couldnt be adapted to be and it is getting too much for me to handle.
Dan McIntyre
"Those who say it is impossible should not interrupt those who are doing it"
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Postby nola » Tue Jan 16, 2007 5:20 pm

Yeah, I find that if I talk about past experiences or just about being ill, I usually start seizing up, occasionally paralysing fully. This even happens during the CBT, but Im getting better at it.
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Postby roselight » Tue Jan 16, 2007 9:18 pm

Check this out to be sure you haven't been misdiagnosed. There are similarities between CD and Nueropathy:

http://www.neurocentre.com

Inspirational story too. Andrew Keen collapsed one day, then couldn't walk for a long time. You can listen to his story for yourselves and how it led to what is now a worldwide charitable trust that researches neurological conditions, and is supported by Neurologists and Doctors.

The site was a Godsend for me as I have the Shingles virus anyway, but I now suffer permanantly with it (3yrs) since a high speed, rear end crash into us while we were stationary. It's a nerve related condition, very disabling and depressing.
Anyway, seems I shoulda been referred to a Neurologist too! I scored top marks on their online pain test and from what I can gather, my nerves have been damaged.

Ha! Me with Shingles, caring for my son with CD! How ironic! You gotta laugh :lol:
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treatments

Postby alycorn » Sat Jan 20, 2007 8:57 pm

Roselight,
I'm looking into EFT right now as a treatment(www.emo-free.org, I think), and from what I've read the theory sounds good. I haven't tried it yet because I'm not good at memorizing things and have been distracted by a lot of other stuff, but I've been told that EFT can be a good treatment. The nice thing is that its free and possible to do to yourself. It might help both you and your son, its apparently a bit of a cure-all. You can see what you find, and it just might be something to explore.

Alison
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