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Focus on FND

Neuro Hebrides has members across the Western Isles, all of whom have a neurological condition, or care for someone with a neurological condition. There are so many different neurological conditions, and symptoms for each condition are wide and varied, and can present differently from person to person.

So if you're one of those with a neurological condition, you often feel like you're alone. Like you're the only one going through life limiting and life changing situations every day.

But Neuro Hebrides wants you to know you're not alone. Throughout the year, we will be running a series of meetings called 'Focus on.....'

We will share stories about that condition, invite representatives from a condition specific charity if there is one, and have time for people to ask questions about that condition.

The first 'Focus on....' was to discuss FND. Functional Neurological Disorder. The most common condition you have never heard of.

FND is a condition in which there is a problem with how the brain receives and sends information to the rest of the body.

Many explain FND by describing your brain as a computer. In someone who has FND, there’s no damage to the hardware, or structure, of the brain. It’s the software, or program running on the computer, that isn’t working properly.

Focus on FND took place on the 22nd April 24. Even for those who thought they understood the extent to which FND changes your life had their eyes opened.

Maureen MacDonald, who everyone knows as Mo, spoke about her FND. What lead to her diagnosis and moving forward, how it changed her life.

Mo's story is tough, but so many people who have been diagnosed with FND, or who are waiting diagnosis, have experienced dismissal, disbelief and abandonment from health care professionals. Read here about Mo's experience:

'my pathway with FND, it isn't a nice one, it was sore, unsetting and changed my life for ever'

In 2018, Mo started experiencing pain in her right jaw. She went to the doctor a few times and was given medication, which didn't work. In July of that year, Mo's son was in hospital having surgery and while he was in hospital, the pain in Mo's jaw became intense and was travelling into her head.

Then came August, Mo woke suddenly at 4am with extreme pain in her head and Mo went to A&E.

By the time they reached the hospital, Mo had lost all feeling in her right side and the pain was so intense they gave her morphine but it didn't help at all. 

Doctors thought Mo had had a stroke but the CT came back clear. Mo thought she could go home that day but then the pain hit again.

Mo was given lots of different painkillers, nothing seemed to work, and the pain worsened.

Mo's husband arrived back at the hospital to find her unconscious in a chair. Mo was moved to ICU before being flown to Glasgow by helicopter the following day.

In Glasgow they performed lots of tests, blood, MRI, ECG etc, all came back clear.

2 neurologists preformed what's called the hoover test and that came back positive.

Mo was in Glasgow hospital for 11 days before being diagnosed.

The day she was diagnosed with FND a neurologist approached, asked for her phone, typed in a website and handed my phone back to me. His exact words were "this is what's wrong with you, read up on it" and walked away.

Mo was discharged 2 days later with no help or assistance, left in a car park with her belongings and no help to travel to the airport.

Mo's got lots of symptoms but here's her top 10 most common, 

  • Pain, a lot of pain.

  • Dystoina which leads to more pain. 

  • Slurred speech.

  • loss of feeling in limbs.

  • Bells palsy.

  • Tremors .

  • Phantoms smells.

  • Brain fog and confusion. 

  • Falling over.

  • Sensory overload.

Mos first time meeting with Neuro Hebrides was at an open day, she was met by the loveliest lady called Chrissie who took her under her wing and Mo has been part of the Neuro Heb family ever since.

At cuppa and catch up the following Monday, Mo said it was like walking into a room full of friends. There is zero judgement and complete acceptance of who you are.

Mo says Neuro Hebrides really did save her. Mo had not accepted her diagnosis and was stuck in the cycle of symptoms, medication, doctors visits and not being able to turn to anyone who truly understood what I was going through. 

FND changed Mos life completely, for a long time she let it control her, but she has accepted her diagnosis now and knows there are people she can turn to and have a moan, a cry and most of all a laugh.

Now Mo runs her own business, has her Neuro Hebrides family and has an amazing circle of friends for support.

There is a UK charity, FND Hope, the first and only global patient-led charity for people with Functional Neurological Disorder. They are a charity run by volunteers with lived experience of FND.

Claire Boyle from FND Hope, joined our Focus on FND meeting to talk about the condition, her story of FND, and how FND Hope can help. Claires story too, demonstrated how FND drastically can change your life and how, as a hidden illness and disability, sufferers face dismissal, disbelief and looks and comments from people because 'you don't look ill'.

Claire explained that there's over 100,000 adults and 20,000 children diagnosed with FND in the UK.

Claire spoke about how FND Hope can support people and has provided a list of links and resources available from FND Hope UK:

FND Hope UK also assisted in the development of the MyFND App - - which helps you monitor and track your FND symptoms on a daily basis.

More information on the Clinical Care Pathway that FND Hope UK are helping to establish: Optimal clinical pathway for Adults with Functional Neurological Disorder (FND) –

If you have FND, or any other neurological condition and would like to find out how Neuro Hebrides can support you, please get in touch:

You are not alone.

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