FND Awareness month (but, always be aware)

This from my daughter - Daisy

April is FND Awareness month & Autism Acceptance month.

As someone who lives with both I wanted to raise awareness and share some information

Here are five key facts about autism:

Autism is a Spectrum with Diverse Traits: It is not a single type of behavior, but a wide spectrum of characteristics, meaning some autistic people may need significant daily support, while others can live independently.

It is a Lifelong Condition Caused by Brain Differences: Autism is a neurodevelopmental condition present from birth, though often diagnosed later, that causes the brain to process information differently.

Autism is Primarily Genetic: Evidence suggests autism is highly genetic, often involving multiple genes rather than a single cause. It is not caused by vaccines or parenting styles.

Sensory Sensitivities are Common: Many autistic individuals experience hyper- (over) or hypo- (under) sensitivity to sights, sounds, smells, or textures, which can make environments overwhelming.

Repetitive Behaviours and Intense

Interests Can Be Beneficial: Known as "stimming" (self-stimulation), behaviours like rocking or hand-flapping can help regulate emotions, reduce stress, and provide comfort

Key Facts About FND:

What is FND: It is a problem with the functioning of the nervous system, affecting how the brain sends and receives information.

Symptoms: Common symptoms include involuntary movements (tremors, dystonia, twitchy), limb weakness, paralysis, seizures (functional/dissociative), gait issues, speech difficulties, and cognitive impairment.

Diagnosis: It is diagnosed by specialists through positive clinical findings that show the nervous system is not functioning correctly, rather than just ruling out other diseases.

Commonality: FND is common, representing one of the leading causes of disability in neurology clinics.

Treatment: Although there is no cure, many individuals improve with a multidisciplinary approach, including physiotherapy, occupational therapy, and psychological therapies (like CBT).

Cause: The exact cause is complex, often involving a combination of factors, sometimes triggered by physical injury, illness, or stress/trauma but often occurring without a single clear cause.

Real Symptoms: FND symptoms are involuntary, very real, and can be life-changing, despite often showing no damage on standard MRI scans

 An interesting question - Is there a link between FND and Autism ?

Yes, research indicates a significant, growing connection between Functional Neurological Disorder (FND) and Autism Spectrum Disorder (ASD), with studies suggesting a higher prevalence of autistic traits in FND populations compared to the general population. They are distinct conditions, but commonly co-occur in both children and adults, potentially due to shared mechanisms involving sensory, emotional, and neurobiological processing.

(City St George's, University of London)

Key Connections and Overlaps:

Prevalence: Studies show a notable proportion of individuals with FND have autism or autistic traits, with one study finding 8% of adults with FND had a previous ASD diagnosis.

Shared Traits: Both conditions share characteristics such as alexithymia (difficulty identifying/describing emotions), altered interoception (sensitivity to internal bodily sensations), and cognitive rigidity.

Mechanism: FND in autistic individuals may be linked to the "Bayesian brain" theory, where autistic individuals may be more vulnerable to sensory prediction errors, leading to symptoms like functional seizures or weakness.

Management: Recognizing this link is important for treatment, as it suggests a need for tailored, autism-informed care for patients with FND

FND Action - Functional Neurological Disorder UK

Please donate here:

Just Giving Page

FND. It is important that anyone and everyone shares this.

Health Update

 Not sure there is an update on my health!

The problem I seem to have is that I am being seen by so many people, none if any of them are talking to each other and that means, I really don't feel like I have moved forward this year, and this year is now April!

When did the health start to fail?

Essentially, I went from my base level (still not good) to something else around a year ago in March of 2025. It felt that I had contracted some sort of virus, more than a cold, different to the flu and, from previous experience, likely to be covid. I didn't feel particularly ill with it, nothing I couldn't cope with. There were a few times when breathing was an issue but, I learnt to control it.

Over the following months I noticed changes in what I could taste. It wasn't a sudden taste loss but more a steady decline. Each month which passed I noticed I could either taste less or, what I could taste, tasted somehow different.

Holiday to Portaventura in Spain

June we went on an all inclusive holiday to Spain, Portaventura a major theme park

I found the salad was OK and tended to concentrate on choosing that. I still mostly could taste and had a long list of food I still enjoyed.

Port Aventura
 

The food at the buffet looked great, it mostly smelt lovely but, somehow, mostly tasted awful to me

The Buffet

Philippines

The Philippines

Late September and we were back in the Philippines enjoying time with friends and family

Meals I generally really enjoyed were starting to become unpleasant.

Essentially I was still feeling OK.

Tooth Issue

October and an annoying, broken and painful tooth was extracted. I feel this was a catalyst for what was to follow as weeks later it was still giving me a metallic taste, significant pain and was very sore. I did ask the dentist to look at it again but they effectively told me professionally not to be so silly so, it was left.

Christmas 2025

I had for some time been enjoying my Christmas pudding.

Turned out that my 'Christmas Pudding' was actually carrot cake. In my defence, it was dark in there

I only tasted what I thought it was. I had moved on to memory tasting.

Pictures in this order:

• Christmas Dinner
• Christmas Pudding
• Carrot Cake

At least the dinner looked nice

2026

The NHS - underfunded and poorly staffed
causing issues

What happened early in 2026 was a series of events, wasted opportunities to get to the bottom of the problem. 

Seemingly I was forever sending email to the doctors, writing formal letters and complaining that they didn't seem to be listening.

When I visited they never gave me enough time to get across all the complicated things which were happening to me. It's as though they only want to pick one major thing from each consultation and put resources into it ignoring everything else.

I had mentioned my eyesight didn't feel right, my hearing wasn't as it should be, my taste (and smell by then) had gone. I had developed a pain in my right leg alongside in my hips.

From this they heard, the hips. I was sent for x-rays and blood tests. No one communicated what this was for, I presumed at the very least it was for my entire legs. Turned out they were looking for cancer in my pelvis (which I didn't have. They congratulated themselves on their success of dealing with this issue, which wasn't one of my problems and that was it to them. I asked about my ears, eyes, leg and so on and was told I needed to make another appointment. A month was lost on this.

A&E

Of course, I ended up in A&E when my hearing failed completely. I attended with a prepared letter simply explaining that I had totally lost my hearing and needed help. around the same time my vision failed and I was in A&E for that too. The pain in my lower right leg became intolerable and, naturally, I was in A&E for that too. This was likely the only thing I should have gone to A&E for in the first place!

My hearing was treated by powerful steroids and I had an MRI done

MRI - a clever internal scanner

The MRI is always something I enjoy if I should ever enjoy a medical procedure! I can just shut off for however long it takes. I can't hear, certainly couldn't when I had my ears done! I find the vibration really quite relaxing and generally find myself dozing off.

I never formerly got the results of this scan, the GP garbled that it all 'looked' OK but, they're not an ENT consultant, I should wait and speak to the ENT department. I am on a waiting list for the ENT department, this is estimated to be around 6 months.

Bluetooth hearing aid

Thankfully, in this process I got to meet the lovely Kyle, one of the audiologists at the hospital who did a hearing test for me. He told me that even post recovery my hearing has changed considerably and that my 7+ year old hearing aids were no longer fit for purpose. Sure I had to kick up a bit of a fuss but, eventually I got a shiny new pair of bluetooth hearing aids which have been an absolute game changer for me. I can and have bluetoothed much of what I listen to so I can always hear phone calls and TV now without blasting the house down, it's most excellent.

Eye problem

My eyes, that's a different story. The way the eye 'casualty' works (emergency department for eyes) is that we go there, they diagnose, treat and refer onwards to ophthalmology for further monitoring. This didn't happen.

I kept getting treatment for my eye problem and mostly, it did nothing. After I think the third visit it did work. My vision recovered completely for all of 3-4 days before I noticed it fading again. I went back and was prescribed even stronger drops. Once again, I am in recovery but, for how long? They keep treating the symptoms whilst seemingly not knowing the cause. I suspect it will just reoccur.

Last time the doctor bloke mentioned he might have to do cataract surgery like, anyone had even mentioned this was a possible cause. Do they do that unless there are actually cataracts? What it seems happens is that my pupil gets stuck and cannot move and my vision goes really cloudy and, maybe because of the inability to adjust, blurred and painful too especially in bright light.

Inevitably I had to stop driving whilst my eyesight was poor.

I have barely driven for many weeks forcing me to very much so stay at home. My friend Robin (my adoptive dad type), has really helped and insisted on paying for taxis for me. Sure, I know I have done many such things for him in the past but, it still feels fundamentally weird to be the 'cared for'.

Fracture Clinic

Yesterday I visited the fracture clinic in Northampton. One of those terrible miscommunication things between the hospital and the GP Surgery. The A&E department absolutely told me from radiology onward I had a fractured fibula (smaller bone in lower leg). However, what the GP got was not that at all. I mean, they were told it was broken but, not what part of the leg, how long ago and so on.

They sent me to the fracture clinic where the consultant (quite lovely) told me that in her opinion I absolutely did not have a fractured fibula. She could see how a non expert might think that but, no, not from the x-ray I didn't. She was able to tie up where the pain was consistently coming from with a swollen area on my tibia, the bigger bone in the lower leg. I am now waiting on yet another MRI on that leg. She also said that, if there was a fracture at all, the MRI would show it up more than an xray would. I said to her that I knew this and asked the GP to arrange an MRI in the first place but they refused.

In Summary

This is where I am now.

My ears are still not quite right, almost stable but, not quite. My eyes are improving to the point I shall test my vision tomorrow and if it is OK, I shall start driving again (yay) Yes, I can remember how thanks.

My leg? I still don't know. In the process I was diagnosed with osteoarthritis, deep joy there.

I've not slept properly in weeks. It's nearly 4 in the morning here and though I slept for maybe half an hour, I got painfully uncomfortable and, here I am up again though, I am aiming to sleep again shortly.

There a great many ongoing complaints. I do that to educate not to punish. I don't expect to get compensation and neither do I seek it. My aim is to improve the service given to patients. No one in the UK should ever have to self diagnose using Google!