FND support, or even general advice for sudden disability in 20yo

[BiddyPopthe2nd]

My very active 20 yo DD, who was studying abroad, got ill over a number of weeks in the late autumn, and has been in and out of hospital since.

She’s been diagnosed with functional neurological disorder, brought on by an injury in her sport.

She’s got worse in that, at Christmas she was in a wheelchair and sleeping downstairs but could scotch around enough to shower herself and use the loo at home, get from chair into car etc.

10 weeks ago, in the space of a 2 hour drive back from rehab, she lost the use of her arms, her voice is badly affected and her swallow. So she now needs hospital bed, hoist, there was even talk of a feeding tube as her eating is so bad.

We’re waiting in hopes of in-patient rehab but she may be coming home in the next couple of weeks. DH is managing most of the practical stuff as I am overseas for work and it’s really hard to get home before the end of this year (supposed to be home summer 2027 but can abandon things at Christmas if I need to). I visit as many weekends as possible (between 1-3 a month).

Are there any practical tips from people - even pointing to other threads - on managing at home (we know the downstairs bathroom will need to be remodelled if she doesn’t get some better function), and for getting out and about (I think I need to persuade DH to get a wheelchair friendly car). Or things to put in place to make it easier to regain independence as far as possible?

And if anyone has advice specific to the Irish system that is also really helpful.

sorry it’s long, trying to put the relevant info here.

Has she been assessed for CIDP or guillain barre?

Hi OP

First of all, I am so sorry this is happening to your daughter and your family.

The best thing I can recommend is educating yourself as best you can, first port of call the FND Association website (it's a UK one).

It's not uncommon for it to be misunderstood by professionals as well as lay people, so it's vital you are clued up.

Wishing you the very best.

Thank you both. We were initially very worried about Guillaume barre, but hospital ruled that out. I need to check what CIDP is, but I know neurologist had done a lot of tests initially and on her readmissions and is confident FND is correct.

I must take a look at the FND Association website, I had found some NHS resources but not that (not a lot in HSE or Irish bodies).

Has she applied for pip? She can self refer to social services who can supply equipment, etc

If you have not come across them, then the Suzanne Sullivan books I think are very sympathetic to families of those with functional neurological disease. She provokes a lot of anger amongst some patient's groups, but I wonder if you might find it a helpful resource.

The other excellent NHS resource is Neurosymptoms (Edinburgh)

I have FND following a severe injury.

it is a very individual illness and symptoms vary massively. Mine are mostly linked to my original injury which was an open fracture of the ankle.

due to that I have trouble walking and when I get tired I lose motor function in that leg and also sensory perception.

my injury was twelve years ago now.

advice will depend on what functions she is losing as well as the original injury but basically:

don’t push things
rest
get guidance on pacing ideally from someone who knows about chronic illness

is she on any nerve meds? My original injury was very bad and I was on morphine patches and tramadol but have stepped down slowly over the years. Now take SSRIs.

if she has been in significant pain for more than a few months it does impact your brain and becomes hard to deal with.

I have a manual and electric wheelchair and the electric has made significant difference to my life.

i have had both hydrotherapy and physiotherapy. Hydro was much more useful. My initial physio pushed too far too fast and my injury wound up worse. Don’t let the physios overdo it.

a little bit of physio every day makes more of a difference than an hour a week which causes pain and exhaustion.

I don't have any real advice I just wanted to say that this happened to my DD after she was the victim of a terrible sexual crime...she presented with initial Cauda Equina symptoms, had all the scans to rule out anything like MS and ALS. She finished her degree by laying in bed and dictating her final project to me as I typed. What I wanted to say was, she was terrified that it wouldn't ever get better and it has .. recently she's come off Gabapentin because she realised it just made things worse, her gait has improved after stopping it and she keeps a meticulous diary of her pain and her mood and what is affected.. it really helped when talking to professionals and in assessing her own progress.. we have had a specialist recently who doesn't believe in FND at all which was a surprisingly bruising experience and started all the tests over again.. what I am trying to say is getting better is a possibility.

I’m sorry to hear your DD is in this situation.

I can help here, I am an HCP. You already had the link to
https://neurosymptoms.org/en/
and that’s a very good starting point.
FND is not uncommon, it’s the 3rd most common reason someone sees a neurologist, so she’s certainly not alone.

Firstly your DD needs a really good understanding of her condition and where all her symptoms are coming from. The good news is it sounds like she improved a bit before and then relapsed, so her body knows how to repair.

Basically the messages from her brain to different parts of her body are being interrupted. If you think of it as a pathway and then suddenly a gate or a wall blocks it. Therapy works on either opening the blockage or re-routing the path.

Focusing on the bit that doesn’t work isn’t very helpful so she needs to try to tap into automatic movement. Make herself a playlist of favourite music and try to do things to the beat, even if she can only manage to tap her toes or tap hands in lap etc. If she is trying to walk she needs to mix it up, sway to music, dance, walk backwards or sideways if the pathway to walking forward is not working.
Distraction techniques also work well in FND so having the focus on doing something else while trying to stand (my favourite is playing a musical instrument the person already plays)

As PP has said hydrotherapy/being in pool is very good for pain and sensory symptoms as the water provides all round feedback to the body.

Everyone is different and symptoms vary but she needs someone to go through and address each of her symptoms with her. Can be in an inpatient or outpatient/community setting.

At this early stage it’s really important to focus on rehabilitation and recovery and not long term disability.

Sorry I have no knowledge of healthcare in Ireland but there are services for FND worldwide so if she is near a major city there will therapists who are specialised in FND and she needs to access them.

I hope she gets the help she needs and recovers soon

It’s worth investigating just in case. Hopefully not but in your position I’d be asking for tests x

Thank you all - lots of info to digest and reading to do from you all. I’m en route to the airport to fly back to where I’m working, just left hospital where DD is. So I have plenty to get stuck into before I start having more questions.

My 19 year old daughter has FND with seizures and many other symptoms. She has hugely improved in the past 2 years - there is hope!

Depending on your financial situation you could check out https://www.apexneuro.co.uk/. They are not a medical provider, are unregulated, and therapy is at your own risk, but they seem to be incredibly successful in helping people with FND, MS and ALS with motor symptoms. They could not help my daughter, but were honest about that and did not have her come back for further sessions.

Your poor daughter. I hope you don't mind me suggesting this, but has she had a second opinion? One of my DC was diagnosed with FND . It was an incorrect diagnosis, it turned out to be something completely different, and treatable. Their symptoms were strikingly similar to your DC.