How can I help my husband

[Lilbourn1973]

I live in Montreal, Quebec, Canada. My husband has been diagnosed with FND. Because of a recent fall, he is in a short-term rehabilitation center. They are severely understaffed. He sees the physio therapist 3 times a week, but there is no psychological support at all. He has been referred to an FND clinic here, but there is a 6 month waiting time. I do not know how to care for him. I 'm looking for a support group so that I can learn how best to help him. Any information will be greatly appreciated. I'm lost.

[Zozo87]

Hi there, Im so sorry to hear your Husband has been diagnosed with FND. It is a very confusing and complex condition.

A short stay rehab with physio 3x a week sounds good compared to my monthly visits.

What type of care/level of care is needed once he’s home?

Most of us with FND know our symptoms and ailments vary greatly between us, despite all having the same condition. I say this because what therapy and support your husband needs will depend on his symptoms and how often/intense the treatment depends on how severe.

My GP has a very good approach: treat as many symptoms as possible. I have ended up with a Physio, dietitian, migraine medication, sleep medication and a psychologist.

You mention needing a psychologist. Was this advised by the neurologist? My first thought when I saw that was I hope the Neurologist was not of the outdated thinking that talk therapy will cure this.

My first year is comparable to someone having a brain injury I say this because its easy to describe and picture how much could be effected and how much time is needed in the beginning: A lot of rest, learning to pace, tiny goals and little achievements, take it week by week. A lot of ppl with FND also display Chronic Fatigue symptoms- which might give you useful information on what your husband could be experiencing physically. Some of us go on to be diagnosed with Chronic fatigue or other conditions formally.

Here is a link to a clinic in the USA that works on FND therapies

reactivept.com/about

Check them out they have lots of info sheets, ideas for rehab and maybe you could join online classes.

I hope you’re going okay too, being the support person is also hard.

[Lady4]

Hi

Sorry to hear about your husband, I agree with Zozo87, there are a whole range on symptoms that people experience that are under the FND diagnosis and its a bit of a mindfield to be honest.

However, there are websites like neurosymptoms.org and FNDHope.org that have useful resources, stories with positive outcomes and meditation videos and courses for self management.

It does depend on the symptoms though, for example our neuro physio mentioned a "grounding technique" when my sons legs went into spasm, just every half an hour or so, putting your feet on the floor, feeling the floor beneath your feet (in effect distracting your mind), so eventually you stand and start to walk normally. Can't recall him actually doing this all the time and whether it worked but I was doing a multitude of tasks so unable to keep reminding him.

Have a look at some of the resources I put on my link. Some are aimed at adolescents but give a factual easy to understand information.

[Brokendeer]

Hi I am a long term sufferer of Motor FND, and have done all the UK medical rehab available.

What they teach you in the UK rehab, is that this is a very common condition, but people even with the same diagnosis can have very different individual or unique symptoms. Which means to live a good life the FND person has to learn to either overcome their issues, manage their symptoms, or recognise the triggers which make things worse on a daily basis.

There is no magic pill, no magic treatment and not every therapy suits every patient.

FND = the brain not understanding the body signal feedback and so can affect any body function at any time, for any duration - it sounds weird, but you do eventually stop panicking about every new symptom, obstacle or progression of the condition; you kinda have to eventually just to stay sane!

Adrenaline, high emotions, physical pacing of things and environment all add to the problems, but you are taught to view things as minor setbacks only.

Retraining of the brain is recommended by all medical professionals, but is much much easier said than done and varies enormously in degrees again to the individual. There is agreement generally that the longer the wait from diagnosis to treatment, the worse the recovery road with poorer outcomes.

Physiotherapy is good, however Neuro-physiotherapy is better (they deal with stroke, Multiple Sclerosis, Parkinsons Disease, brain tumours etc and blend physio with occupational needs and tend to work to personal goals of the sufferer) and if you cannot find them. I would suggest a muscular-skeletal Therapist, because they again work on tailored programs for the individual's specific needs. Yes, repetition of normal Physio can be a huge issue having FND, personal pacing (not pre-set) for personal achievement was invaluable for me.

Psychological therapies like Cognitive Behavioural Therapy are hailed as the most successful for FND, teaching stress reduction, positive/different thinking and meditation with breathing exercises, are the key practices to adopt for better life balance.

However, most of the psychological and CBT standard advice for FND are in some books; so if you cannot get to a Therapist soon, remember the processes written are similar to what you would find in practice.

These books, bought online, I found useful for FND:

Overcoming Functional Neurological Symptoms: A Five Areas Approach

Author: Chris Williams (and others)

Publisher ‏ : ‎ Routledge; 1st edition (26 Aug. 2011)

Paperback ‏ : ‎ 312 pages

ISBN-10 ‏ : ‎ 1444138340

ISBN-13 ‏ : ‎ 978-1444138344

(this was recommended in UK rehab - and has worksheet/set goals to complete)

Living with Physical Disability and Amputation Paperback – 1 Sept. 2009

Author: Keren Fisher

Publisher ‏ : ‎ SPCK (1 Sept. 2009)

Paperback ‏ : ‎ 128 pages

ISBN-10 ‏ : ‎ 1847090761

ISBN-13 ‏ : ‎ 978-1847090768

(this I discovered via another hospital. It is full of common sense, different peoples symptoms and life challenges, goal setting and advice on meditation - so do not let the title put you off!)

A helpful website besides FND Hope fndhope.org/

is the Professor Stone website neurosymptoms.org/en/

Most of all , remember not everything in the FND medical world will apply to your husbands symptoms - we are all unique, the only commonality is our brain works in a different way to normal and it is real physical condition (with brain changes on MRI), not all in the mind.

Always think 'Less haste, more speed' 😀

Look for the calm in the storm!

[Kosh1689]

Hello,

Look here for support.

fndhope.org/

Have a wonderful day,

Doug

[Kosh1689]

Look here: neurosymptoms.org/en/#/welc...

Doug