Friendship

[Nicola-8]

Hi guys,

Just posting to say hey! Hope everyone is well!

Just wanted to make friends with people going through the same thing! 😁

Thank you

Nicola

XxX

[LEEJUNFAN]

Hi Nicola,

Nice to hear from you and welcome aboard.

I'm Tony and my wife Kim was diagnosed with FND in 2012, aged 34.

Any questions, please feel free to ask and we'll try our best.

Nice to meet you.

Best Wishes xx

[Nicola-8 in reply to LEEJUNFAN]

Hey Tony and Kim

Lovely to meet you both!

Brilliant thank you 😁 it's lovely to have some support can get so lonely sometimes

Take care

Nicola

[LEEJUNFAN in reply to Nicola-8]

Anytime Nicola.

Write whenever time permits you.

Tony and Kim xx

[Kittilyn]

Hello Nicola,

Nice to meet you!

I'm fairly new here myself, & can tell you that folk here are great. Very helpful, supportive, & friendly.

Take care 🙂

[SuCouling in reply to Kittilyn]

Hi nicola well come my brane not wirk well but if i can help i will

Su x

[pickleweed]

You might want to join one of the various Facebook groups for people with FND.

[Mat08]

Hello everybody mat here 45yrs old loving dad good man I think lol anyway in 2011 I had a operation on my kneck to remove a tumour or part of one after the operation started to loose feelings in left hand a little gait in the leg ok I thought no worries and now I have been diagnosed with fnd use walking frames had all inside of mouth removed due to seizures I have constantly while sleeping my whole body is just one big anamilstic movement the hospital have stated its not safe to keep administering pain felief as its having dire effects on a certain part of the brain my Gp has called me and told me not to go back there because I can only get treatments via specialists but the letter I have just received from neuro ward is one that says we just can not treat you anymore we are very sorry well you know what I say JOG ON at present I am putting together a small private gym in Sheffield I have surrounded myself with personal trainers and the most wonderfull dance instructer listen guys dancing helps trust me and the lifestyle I have led well you would never have thought I would ever be on a dance floor 🤣 anyway guys I am now down to a twelve inch kneck my calfs even thinner but for me guys just push hard a doc two weeks ago was totally honest with me its game over but its about the journey not the destination if anyone ever feels down contact me and please the glass half empty half full thing well it's time to drop the glass let it smash and drink straight from the tap never thirsty again winner big love mat

[Mat08]

Now this is what I can't work out 1 professor telling me it's because I got knocked over when 5yrs old and now I am getting told its because of the operation I had in 2011 that was too close to the central nervous system in the kneck mix that with a undiagnosed hidden brain injury and the operation and out comes a zombie with no teeth

[RobertWT]

Hi Nicola

I like the concept of 'going through'! That is, we recognise that we WILL come out the other side, impossible as this may seem from time to time.

There are many experiences shared here, mine included. What we seem to have in common is uncommon hope (as in HOPE) and an insight into a disorder (I shall not dignify it with the words 'illness' or 'disease') for which there is (as yet) no single cause (trauma seems to play a major part in the majority of cases) nor a simple and straightforward 'cure'.

Also, the medical profession, by and large, does NOT understand FND. If they have heard of it (many have not) they lack an understanding of what is NEEDED. This lack of clear understanding is shared with medical professionals (including many neurologists, that I surmise) and certainly Joe Public doesn't know FND from a dog's hind quarters.

So we have a merry band of enthusiasts. We are rebuilding our broken clocks, cog by cog, sometimes with the support only of our long suffering loved ones and perhaps a sympathetic GP.

Oh yes, there IS a group of supporters who:

- know about FND

- understand the problems of daily living

- accept that others are in the same boat and that a word of encouragement is better than the pharmacapoedia of meds available from Mr Boots etc

- care enough to do something.

Where is this resource? Is it available on the NHS (or your local State Health provider)? What does it cost?

Answer: Here. No. Nothing. In that order.

We, the sufferers, the fighting (do we have a choice?), the hopeful ones are HERE.

Welcome.

Robert