Something to help : Hey folks Trust all... - Functional Neurol...

Functional Neurological Disorder - FND Hope

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Something to help

andyglasgow2016 profile image
14 Replies

Hey folks

Trust all is well..

I want to suggest people to try swimming. ... Don't switch off, wait!

Find your local pool which has good disabled access, mine has a room with a hoist etc and changing bed and a water hoist to gain access to pool

When in the pool use a flotation device to support around your body (the staff will know what's good for you)...

The. Just enjoy the water and slowly try to move your body and limbs when you see sitting in the pool... It'll be a bit tiring at the end but honestly this does help movement and a sense of achievement!

I went from using a wheelchair to now 2 sticks and a mobility scooter when out longer.. So it does work :)

I am part of a few other groups on here seeing what other illnesses are around and can say

Is FND folk don't moan as much as some folks lol

It's nice to see folks on here asking questions and helping , rather than moaning and wanting sympathy

b blessed guy

Trusting Jesus and knowing he's giving me strength and grace through this

Andy

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andyglasgow2016 profile image
andyglasgow2016
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14 Replies
Danslatete profile image
Danslatete

I did Aqua aerobics for years after my car crash. It helped with strength mobility balance and coordination. It also helped with general fitness. It would wipe me out for a week just in time to start again but it was worth it.

andyglasgow2016 profile image
andyglasgow2016 in reply to Danslatete

Yh I started that way... I'm not quite able to do aqua aerobics coz they really do move!

But I started gentle movements and then up to 1 length then 2 then built it up to 10 now after 8 months...

If the doctors say we decide when to get better, which I thinking is complete "bogs dollocks".... We have nothing to lose.. May wipe you out but it'll help u sleep ;) lol

Do it if you can get out of house.... :)

B blessed

sunride profile image
sunride

Hi all, I was considering trying getting back into the pool again. I must admit it's never been my thing 😨 but if it helps I'm definitely willing to try. Your post has given me hope. I still find the stigma attached to FND one of the most difficult to cope with. I wish you the best for your future. ☺

Best wishes. X

andyglasgow2016 profile image
andyglasgow2016 in reply to sunride

Appreciate your kind words.

Swimming was never my thing as I put weight on from not being able to move etc but you know what I found.. Other folks r more concerned about their figure than mine

But by actually going I've lost weight.. Gone from xlarge to large on clothing and 3 inches off waist..

So it has bigger perks

I go 3 times a week

But it has times when it catches up and I rest for a week

The best thing to do is speak to manager and get a wee tour of what can be offered from them as a centre... There will also be discounts available for disabled customers on benefits :)

Stigma is pants indeed but best way to describe it to folks is that your body has a breakdown inside of communication and you just have to retrain everything ..

If they ask for a name for it ,

It's called, it's quite sensitive so jog on plz.. ;)

sunride profile image
sunride

Thanks for your kind words I really appreciate it. I am genuinely pleased that your having a positive response to swimming it gives me the encouragement to try. I am currently in a wheelchair ( which I hate!😠) currently I have neuro physiotherapy once a week and my mine goal is to get out of the wheelchair. The problem i face is my physio doesn't have much knowledge of FND. I was only diagnosed 4 weeks ago.... plus to add to my confusion the neurologist Diagnosed with a( wireing problem in the brain ) he never mentioned the word FND I have just come to that conclusion myself. Have you ever come up against any of my issues?

Apologies for the rant😕

Best wishes.

andyglasgow2016 profile image
andyglasgow2016

No your completely fine.

I'm not sure if it's FND or something else as suggested.... Can't self diagnose.

Great you have determination ... That's something I have and seen great progress by it.

There's a huge amount of support available for you in swimming so don't feel you cnt do things when you really can! Want to encourage you to really go to the pool and just enjoy resting in the water :)

With being up against things ... I think no matter what the diagnosis there's always lack of understanding..

I've seen some consultants just be down right rude to me with my parents watching and then hitting the roof. Lol

All the best

sunride profile image
sunride

Thank you once again for the advice. I do believe the FND diagnosis to be correct because that was in the medical notes sent to the GP also the physio refers to FND diagnosis which again was in the patient information notes from my neurologist.

I will definitely be making a visit to the local pool, I do hope I have a positive response as yourself. ☺

Kind regards.

andyglasgow2016 profile image
andyglasgow2016

Sorry if I thought you hadn't been diagnosed

Glad you will do it

All the best

sunride profile image
sunride

No problem, I am grateful for all your advice you are very informative. X

Dave_1 profile image
Dave_1

Thanks, anything that gives us a feeling of well being and positivity is great but one that helps our muscle strength and internal core strength can't be bad.

Totally agree about moaning, though believe me I still do at times. Especially in the mornings. In the beginning all the emotion and feelings of loss would overwhelm anyone. Then you have to make the decision whether to become the patient or the fighter. I chose to fight and have just got my driving licence back, well a medical one for 3 years. At first I could hardly stand and it has taken years to get this far. Knowing that things CAN IMPROVE is brilliant. Just a pity I had to discover it myself, more awareness please.

Thanks Andy

sunride profile image
sunride in reply to Dave_1

Hi Andy,

Thanks for such excellent advice ☺

I am so glad I joined this group i no longer feel alone. You have inspired me to fight on.

Best wishes.

GuitarJoe profile image
GuitarJoe

In the water was how I started coming back to a more active life. First with Hydrotherapy at my local hospital ( worth asking your Doctor for that). Hydrotherapy is particularly good because along with guidance from Physios you are in a warm pool, which helps ease muscle tightness. Then, as hydro was only 6 weeks at a time with 3 month breaks in between, I started in a warm pool locally. Then another warm swimming pool. With the extra size of the pool I started swimming. All in all I got back stamina, muscle tone and a lot of my life. I still walk with a stick outside and have to use a buggy for long distances but none of that was possible before. I highly recommend some kind of pool exercise.

andyglasgow2016 profile image
andyglasgow2016

Encouraging to see others saying it's helped them too!

Tewa profile image
Tewa

The last time I tried the pool therapy, I ended up in the hospital because my muscles fatigued to the pint where I couldn't get out of the pool.. Hope fully this will help many, but if exertion causes increased fatigue, this is not the way to go. Just be wise and use caution.

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