Dr. Mark Edwards London Inpatient Programs for FMD

[sgaetna2013]

I would appreciate hearing from anyone who has participated in one of Dr. Mark Edwards' inpatient programs (London) to treat FMD/FND. If you have participated in this program, would you please let me know your opinion of it.

Thank you.

[Leesaloo]

hi, I completed his 1 month program 5 years ago this Christmas. It’s a great program but you can only choose symptoms that are able to be helped in that time. I chose walking and talking, my walking was helped as I constantly limped or dragged my right leg, their advice was to put my heel down first which has helped enormously, fatigue is my main enemy, talking and concentrating my speech becomes slurred and I struggle with my s. They taught me ways of coping with fatigue, y only regret is that there is no follow up to ask how you are getting on due to lack of funding. My non epileptic seizures have reduced enormously if I don’t overdo anything mentally or physically, recognising the signs can still be hard though. Hope this helps.

[sgaetna2013 in reply to Leesaloo]

Leesaloo--Thanks for your reply. What hospital was you program in?

Thanks

[Leesaloo in reply to sgaetna2013]

I’ve forgot, it was in London’s queen square, right near great ormond street hospital.

[CreativeCraftyCats]

hi

I took part in the FMD4life trial back in February at St George’s Hospital in London. I’m not sure if it’s the same program you are going on mine was a week long with 2 sessions per day. It helped me massively I dragged my left left and struggled to walk it was so tiring I used a stick and walker to get about.

7 months on in back to walking up mountains and I haven’t used my stick or walker in over 5 months it really gave me my life back.

I really hope it helps you in the same way. 😺

[sgaetna2013 in reply to CreativeCraftyCats]

Can you describe a bit about the treatment you received which was so effective? Was this an inpatient program? Thanks.

[CreativeCraftyCats in reply to sgaetna2013]

hi

It was a week I stayed in the hotel on the grounds of the hospital. I had 2 sessions per day with the physio who focused on getting me back to walking correctly learning to reselect the pathway which was still there but I needed to rediscover. It was a gradual build up over the week and then continued once I got home. It was part of the Physio4FMD trial.

😺

[Hidden]

Hi, I attended the program, 4 weeks, in patient in 2012, I didn't have to select what I needed help with. Dr Edwards and his team did an assessment, along with the physical, mental health and cognitive skills I have lost due to a TBI. I spent the 1st week mainly in the hospital, with no trips outside, once my walking, talking, balance and mental health improved I was allowed off the grounds escorted, then eventually on my own. In my experience, you only get out if it, what your willing to put in. I tried my absolute hardest, and now, years later im glad I did it. I will admit I thought I could fix many things that were wrong with me, I couldn't, and admitting you need help is sometimes difficult. Mark has been helping me for years, what impressed me most, was his willingness to listen. I've had some extremely dark times, and he always will try to help and suggest something else to help. I have no idea what the waiting times are for the inpatient programs these days, but if someone has offered it to you, you're obviously a worthy candidate, I was on the waiting list over 2 years to get on this. I sincerely hope that this helps, it changed my life for the better, and thanks to team at Queens Square I have 90% of my old life back, I still do certain exercises and therapies even now, because I forgot stuff...😁

[sgaetna2013 in reply to Hidden]

Thanks so much for your input about the inpatient program. Unfortunately, I am in the U.S. and am unable to travel to U.K. for treatment. U.K. seems to be light years ahead of the U.S in effective FMD treatment.

[Hidden in reply to sgaetna2013]

Your very welcome, I hope you get the help you're looking for.

[Brokendeer]

Hi where ever you are in the World, the basic FND Rehab will be centred on Cognitive Behavioural Therapy (CBT) and Neurophysio - these are the core ones to retrain your brain, setting individual goals and repetition of these techniques and new found skills.

Specialist Neurologists all believe that retraining the brain and self-management is the key to overcoming Functional Neurological Disorder, because FND is caused by the brain being overloaded with too many unhelpful nervous system signals (from whatever event happened in the patients life to upset the natural balance) .

The loss of normal function patterns, `Flight, Freeze, Flight' hyperactive circuits, tracking of movement and prioritizing tasks - mental, physical & emotional areas all gets affected to different degrees in FND Sufferers, but they believe the learning circuits never do suffer as badly and can be rebuilt to get around the incorrectly read nervous system signals and regain some kind of brain systems workable balance.

Good luck with any therapies, remember all FND symptoms vary enormously between one patient and another, what works for one may not work for you - keep searching for what suits your needs.

Look for the calm in the Storm!

[sgaetna2013 in reply to Brokendeer]

Thank you for the helpful reply. Would you describe to me what CBT look like in the context of FMD? Secondly, did your physiotherapy have specific training in working with patients with FMD? I have found "regular" PT to be ineffective.

[Brokendeer in reply to sgaetna2013]

Hi,

Cognitive Behavioural Therapy (CBT) - MENTAL/EMOTIONAL

Functional Neurological Disorder is treated very similar to PTSD (or was several years ago) of which CBT has been found to be effective. The CBT Therapist, usually a Mental Health Services Nurse, will try to establish past events that may have contributed to your current symptoms, make you fill out a fears/behaviour questionnaire and then help you identify bad and good triggers for your symptoms. Lets be clear, this is not Psychoanalysis or Psychiatry itself; CBT touches on Psychology and is all about setting mental goals to achieve what you need to improve your everyday life to help you self-manage your symptoms effectively etc.

So all to do with facing those fears/situations gradually over time (in a controlled, non-scary way) to make you change your mindset, rethink actions and increase confidence/ coping strategies when exposed to mental & emotional stress, while reducing the `Flight, Freeze & Fight' instinctive survival reflexes. In a nutshell, CBT thinks all your symptoms can be cured with the mind!

Neurophysio - PHYSICAL

FND Physical symptoms are unique to each person, therefore needs a specially trained Neurophysio mostly are familiar with Stroke, MS and Parkinson's i.e other complicated movement dysfunctional coordination diseases/conditions. Ordinary Physiotherapy is no good, it assumes you have normal reflexes, normal speed of limb and brain, normal coordination and that you can repeat the same action -on demand- whenever asked and right from the start of therapy. Standard Physiotherapists also have no comprehension that FND brains are operating their nervous system mostly with random subconscious activation patterns and frequently without voluntarily override control of that coordination or muscles/joints, balance etc.

Now Neuro Physiotherapists referrals should be with those who have basic training to deal with FND Physical movement. They adapt standard Physio exercises/movement accordingly with FND knowledge and will set Physical goals to match your individual needs to improve your everyday life and management -so more a combination of Physio and Occupational Therapy really. However, they are not an FND Sufferer and so do not understand necessarily what is an ACHIEVEABLE goal for you in particular.

This is where you must take what they say onboard, strive to overcome your physical limits, BUT also adapt their practices, exercises and advice to suit your style of learning/timeframe to make the goals achievable. There is nothing more soul destroying than to not reach a set goal which they are expecting good results each return session and reasonably quickly (they have to show their work is hitting progress targets). So make it clear you will try your best, no guarantees if not able to Pace Yourself!

Note: If in UK, there have been some advances in a handful of dedicated FND Neurophysios being trained (mostly London or Scotland), though not across the country and certainly not widely available. However, Neurophysios with some basic FND training may well be available at your local hospital if your Neurologist or GP contacts them and makes a referral.

Good luck

Look for the calm in the Storm!

[sgaetna2013 in reply to Brokendeer]

Thanks for your informative comment. Unfortunately, I live in the U.S., where there are virtually no physical therapists with any understanding of FMD. The U.K. is far far ahead of us in this regard.

Best wishes

[Brokendeer in reply to sgaetna2013]

Hi had an idea about your lack of access to Neurophysio FND specialists, if you can find a Muscular- Skeletal Physiotherapist in the U.S they may well be a good alternative option - they a bit like Neurophysios in that they concentrate on correcting body posture and movement specific to the coordination or movement problem , have vast knowledge of the body systems and customise specific exercises for the individual's needs.

I realised these specialist Muscular-Skeletal Physiotherapists existed via a UK TV program few years back (they were not common even in UK then).

-A guy had a severe back pain problem, he went to this therapist and discovered that breaking his jaw when a teenager had in fact caused his neck and whole body to adapt and get out of natural alignment and given him spine problems... amazing results after customised exercises, he gained more movement, less pain and was generally happier!

Look for the calm in the Storm!