I am new to this group and am excited to belong. I have been caring for my mother for years. After multiple failed treatments and misdiagnosis she has significantly worsened since Christmas. She is not longer able to walk at this time and we are desperate to find the right help. He MDs have suggested an inpatient rehab stay at a clinic that focuses on FND. We are having difficulty finding one. We live in Buffalo NY and are now looking across the country to find help. Any advice would be greatly appreciated.
Thank you!!
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Soccer8
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I’m in the uk but I know what you’re going through it’s taken 10 years to finally get accepted to do an inpatient stay in a few months from now (if covid doesn’t force to cancel again).
I wish you all the best for treatment.
Ps there are groups on Facebook to join & they give valuable tips & opinions. It’s helped no end for us
I was on a waiting list for the Lishman Unit programme. I went there for a viewing visit to find that the patients there were psychotic.
Doors are opened with swipe cards for Dr’s only. You are told you come in voluntarily and can leave when you feel like it, which I did not believe. The unit is based in a prison like environment. Large tall metal fencing all around.
My consultant is a psychiatrist and that is who I was automatically allocated to when I had spent three weeks in hospital undergoing negative results blood tests. I was advised that this was my neurological consultant to only be in shock that he was a psychiatrist, I mean that was just awful. Implying I am mad and have mental problems.
I am someone who is intelligent smart etc. A lawyer. I tell you the UK tends to have this notion that FND is psychological, we are mad, we have had some traumatic experience causing the body to react the way it has.
Honestly, these rehab facilities, if you ever get to visit one are like a mental facility.
So good luck but do think carefully on whether you are prepared to be putting your mother through that . But I would not go near any FND rehab clinic with a barge pole.
If you have the energy it’s better you continue to research and find various tests etc to get to the bottom of her problem.
This worries me, don’t get me wrong i do suffer with certain issues but it is simply since the FND. I’ve done psychological therapies for years & nothing! We have been led to believe that we can come & go freely. I’m not sure what to think now.
FNDsucks9 I am sorry, I did not mean to scare you or confuse you or anyone else.
It’s just I couldn’t believe what I witnessed when I arrived at that unit. It’s crazy. Maybe it’s different in NY.
But I am starting to seriously think FND is something that needs a good Neurologist to figure out each individuals problem. There must be something really wrong with our nervous system or something that’s not detectable via bloods or simple MRI or CT Scans. FND is just a symptom to show that there is a problem but no one knows exactly what. It’s more than just psychological.
Someone needs to be willing to go deeper and further. Others like us have found that Dr, I haven’t yet but I will find them.
Hi, thanks for the reply. It’s ok & didn’t really scare as I’d rather know what I’m going to be faced with as we haven’t been told what to expect yet. I’m grateful as now im armed to as questions. I admit that I’ve struggled with depression however it was gastroparesis that started the symptoms. I agree more research is needed as there are lots of people who do not have mental health problems.
Hi, I cannot advise you on any American Medical Professionals or Clinics for FND, as I am in UK.
That said, I have had Motor FND for 12 yrs now and it mostly affects my legs and walking, either I cannot walk or walk with legs in very strange positions etc.
I have done the UK Inpatient Multidisciplinary Therapies for FND and honestly, it is a case of the longer you have the symptoms before the Therapies the less likely you are to get back to your normal or be `cured'. Considering FND is very common, about 1 in 5 Neurologist visits ends up with FND diagnosis, there is not the understanding or support like with equally common Neuro conditions of Parkinson's or Multiple Sclerolsis.
The FND Therapies Course usually is a mix of Cognitive Behavioural Therapy (CBT), Neuro Physiotherapy, Occupational Therapy and/or Psychiatric support.
The aim is for you to understand the condition better, discover your main triggers of your symptoms and what to do about them in Daily Management techniques, if any drugs may help etc. However, let me be frank about this, they do not further investigate your symptoms or encourage any further medical investigations of your FND!
Note: However, if they think other health issues may need review or better management, i.e Diet, Diabetes, Heart Problems they should tell you and make arrangements to see those other special doctors.
Physical and Mental stress, anxiety, upset emotions like depression or frustration are all key triggers for FND getting worse
- so anything else medically going on in the body to increase this overloading of the brain, definitely needs to be addressed, straight away!
After the Course you maybe be told follow up Neuro Physiotherapy or CBT Therapy in your local area might be worth while. However, in UK you are pretty much left to fend for yourself again to organise and continue with any recommendations/ life management adjustments. Their theory being, you are now able to take care of your symptoms because you have done the Course and the belief is that FND is not classed as a Condition that deteriorates like Parkinson's or MS. If you Mother is getting seriously worse over a shortish period of time, maybe it is not FND? Maybe another brain issue?
I did follow up with Neuro Physio but got frustrated when they did not `listen to me' and kept setting unobtainable goals, which only made me depressed not better! I did get another General Physio to visit my house for a little while, who was great as she was used to dealing with Stroke and MS affected people and could see the home environment challenges, so goal setting was realistic and to some degree obtainable. She also was the only one to suggest using ankle weights when doing Physio to help strengthen the body position/movement feedback signals to the brain, somehow the added pressure reassures the brain the limbs are still there? Careful though only use light weights at first, do nothing to overload the brain, it needs extra time to process things when affected by FND.
I found the Inpatient Course helpful because I needed to understand and process what FND actually was and what type I actually had - before I could get my head around it (sort of!).
I will say that I found you could get the same main benefits of the Course relating to Mental Wellbeing i.e CBT, Psychiatric and Occupational Therapy- all through reading and using these two books:
`Living with physical disability and amputation' by Keren Fisher (Do not let the title put you off, it has good goal setting, anxiety advice, CBT and general life management for those with mobility issues). Available on Amazon not expensive to buy.
`Overcoming functional neurological symptoms a five areas approach' by Professor Christopher Williams, Catriona Kent, Dr Sharon Smith, Dr Alan Carson, Professor Michael Sharpe, Dr Jonathan Cavanagh. Publishers Hodder Arnold. (This is specific to FND and has Workbook Sections with multiple choice tick boxes and exercises to do, like again goal setting - but crucially it explains FND incredibly well at each point in the book). Also available on Amazon, bit expensive to buy.
The main website I like is Professor Jon Stone's neurosymptoms.org
which has info, tips, how to explain the condition to others etc.
Also worth checking out, I liked the Multiple Sclerosis Society, mssociety.org.uk
For non-responsive and weak limbs, sleeping issues esp. good.
And if rigid, stiff limbs is a feature of why walking is difficult try the Dystonia Society, dystonia.org.uk
they even have two types of Dystonia which I can relate too, Functional Dystonia and Paroxysmal Dystonia - you see like FND, Dystonia is another condition little understood?
Hope some of this helps?
Be kind to yourselves, search for the calm in the storm!
Wow this is a very good response I can relate to. The helpful tips and how the UK is with FND even if it’s another condition no further investigations etc. You are definitely left to your own devices. It’s crazy.
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