This week is Functional Neurological Disorder [FND] Awareness Week (7-13th April 2019) and people with the condition, along with those treating them, are sharing their stories and experiences in order to shine the spotlight on this often misunderstoo
FND is surprisingly common affecting around 20 people in over 100,000 of the population. It is due to a problem with the functioning of the nervous system and thought to be the result of the brain’s inability to send and receive signals properly. It shares similar symptoms to those experienced by MS and Parkinson’s Disease and many in the medical profession are unfamiliar with the condition leading to misdiagnosis and delays in treatment that can have critical long-term consequences.
Those suffering from the condition experience a variety of symptoms that are physical, sensory and/or cognitive. They commonly include limb weakness, paralysis, non-epileptic seizures, chronic pain, bowel and bladder problems, speech and swallowing difficulties and memory problems.
The causes of FND are rarely the same between two people which has led to a lack of understanding of the condition and this can negatively influence treatment and care. FND is a problem in the nervous system which is not caused by a physical neurological disease or disorder. Because of this, it is often assumed to have a psychological cause… a psychological condition that converts to physical symptoms. However, a feature of patients with this condition often links to a physical trauma, whether that is a fall or a bang to the head.
People are often wrongly prescribed antidepressants or worse written off altogether. However early treatment that combines neurophysiotherapy and psychological therapies is proving to be effective at facilities such as STEPS Rehabilitation in Sheffield. STEPS is one of the few places in the UK with growing experience of treating the condition.
Professor Richard Grunewald at Sheffield Teaching Hospitals NHS is an expert on FND and available for interview.
Alison’s Story
Alison had an extremely successful career as a Finance Director and then as a Managing Director, and although these were stressful roles, she loved her job. She had also always been extremely active, visiting the gym 2-3 times a week.
In 2014 Alison started to experience a loss of sensation in her legs with some loss of balance. Her gradual onset of symptoms also included an apparent feeling of ‘slowing down’, from moving her limbs to blinking. After visiting the GP several times with no diagnosis as she ‘looked well’, Alison saw a neurologist who again, could not diagnose anything.
On the numerous delays in a diagnosis, Alison says, “GPs are cautious when diagnosing FND as people are not receptive to it. But there needs to be swifter diagnosis, as the sooner an individual can have intensive rehabilitation and physiotherapy, the better the possible outcome.”
By this time Alison had left full-time employment and was working on a consultancy basis. Her symptoms gradually began to worsen with her experiencing a ‘slowing-down’ of all her movements. After some independent research around her symptoms, Alison thought she was possibly B12 deficient and visited another neurologist who again, couldn’t find anything wrong.
In February 2015, Alison’s symptoms were causing her a great deal of stress and, as a result, becoming more severe. She was introduced to a gentleman who recommended she visited an endocrinologist based in Nottingham. As a seasoned medical professional, who looks at everyone holistically he recognised the connection between mind and body, and the impact the stress was having on Alison physically and diagnosed a Functional Neurological Disorder. Alison credits him with “saving her life” as he was the first person to fully engage with her symptoms.
Following a diagnosis, the relief alleviated the symptoms and Alison’s condition plateaued until she suffered a couple of falls which once again aggravated her FND. Alison had seen a counsellor and a physiotherapist privately but appreciated the need for a more intensive rehabilitation programme. With her symptoms worsening and a possible 12 month wait to be assessed for an FND inpatient unit in London, Alison came across STEPS, a specialist rehabilitation facility in Sheffield. They have experience in treating people with FND and understand the importance of an intensive rehabilitation programme with a mixture of therapies. Having been fully immersed in an intensive rehabilitation programme designed specifically for her, Alison is already making positive progress and is hopeful of improvement.
Her full 4-week residential programme includes a mixture of therapies, including:
• Physiotherapy
• Hydrotherapy
• Occupational Therapy
• Massage
• Psychotherapy / Psychology
• Neurologic Music Therapy
• Speech Therapy
Alison lives in Nottingham and is aged 56. Alison is willing to speak to journalists about her condition.
