Brilliant work Dan has done bless him and I agree with the replies.
We all will have to continue together to help each other through on this site until the medical profession decides to act more positively on the FND.
I appreciate they're not GOD but I often wander how the subject changes if people go private on this.
Are there any experience's from people on here that have gone private?
What's the difference from the NHS?
Money sometimes talks unfortunately but in my experience of trying to fight for things on my wife's behalf, the system couldn't give a damm, no matter how much proof such as letters, medical reports etc you put in.
My wife got her PIP 2 years ago, but I think that was only due to the fact that the Dr seen her leg shaking uncontrollably and when he touched her neck, it threw it into spasm.
This is why I video record my wife's symptoms so as to show the proof, but even that hasn't been enough when I show them it on my phone.
When I write ' them', I'm referring to the housing who won't accommodate my wife to a Bungalow from a flat.
I have to wait until I'm 50 in 2 and a half years until we can be offered one.
What's that all about?
Most of the systems outlook on all this is prehistoric and etched in stone and they don't like upsetting the applecart.
My wife is being referred to see 2 Neurologists soon as her original one thinks this is stress.
Well I tell you one thing, I'll have my questions all ready for this one because my wife was refused Counselling last year.
The reason?
They felt she was already positive in her outlook on all this and that she wasn't depressed enough to go on there list.
I was glad to hear that because she's like all you are on here, true fighters.
Sorry to go on folks, but the fight will continue to get recognized and until this happens, this site will be our home and refuge.
Loving wishes to you all and GODS speed.
You all continue to inspire.
Tony & Kim xx😊😊
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LEEJUNFAN
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Tony, you are a true orator. "Eloquent and skilled" as the dictionary states.
Only thing, not brilliant, just country boy!
I love you taking the conversation from focus on solely help to expanded help plus getting options for living!
Really nice job.
More in few minutes...
Dan / Seattle
in reply to
Tony and Kim.
To continue previous reply...
Tony, you are shifting the tone of our conversation to more assertiveness. I agree with whole heart that is right way to go worldwide.
Mountain of respect for you because Kim is first in life for you. She has many issues we pray for daily to be resolved so she return to active healthy life.
Yet, we all worry about toll on you. Please know we all look at whole families and want wellness and happiness to prevail.
We will take fight to international level and we will use great medical knowledge and personal experience of our community to clearly tell medicine and social support services our needs and direct them in our care.
Thank you both for sharing much of your story. I feel hope in my soul that with our collective passion and " smarts" we will take modified approach and put medicine in position of responding and investigating and giving services as opposed to apathy and confusion.
Hey! Just a quick one.. have you looked on the housing website?? I know I'm my area there's sheltered accommodations available!! Are you on the housing list or in council or association housing? Or are you trying to get on the list??! Can you move to an area that has suitable housing?? Just ideas xxxx
Yes, we're on the housing list and live in Manchester and Kim has a medical A Award which is high and I have a working household priority too.
I've done endless appeals, MP has tried 3 times and our own GP has recommended a Bungalow so as to give her a bit more quietness which no doubt helps her FND.
Also been to Legal Aid, and a lovely lady from Health Unlocked also gave help.
It's the age criteria.
No Bungalow due to us being so young.
I only work part time now due to my caring role so going private is out.
I'm putting in a 4th appeal but I know what they'll say again.
We have to be 50 or over.
If you win the lotto, don't forget our Bungalow will you!
You've got to laugh or you'd go mad with all this red tape nonsense.
Age before a medical condition.
Now that is a joke.
Best Wishes and thanks again.
Tony & Kim
Hi tony& Kim, I cannot get any help from anyone as every meeting away or at home with professionals have all said unable to help me as too severe and complex for them to deal with, so I'm just left on my own, they admit the only one I keep hanging on to is my partner as I don't want to let him down. As you have put when money is involved your on your own, social worker decided she knew differences in my seizures and am capable of doing everything around the house, looking after myself all day on my own, taking medication and was awarded the grand sum of £29 pounds a week to get help in. If it wasn't so bloody tragic it would be laughable, how a social worker can work out my seizures no one knows, plus she carried on with interviews while I was in seizure unable to move or speak, then told my partner when she left he should be working more, he works 6 days a week now. What a fiasco of utter failure. Hope you are well at moment. Lisa. 🤗
Sorry to hear about your experiences and if we had the money we would help you out trust me.
It's so tragic to hear of so many people like yourselves, who are doing the right thing and even more, who are going beyond what is expected of them, to be falling through the loophole.
We see and hear it so many times.
Fortunately Lisa, our assessor is lovely, and even she's admitted that it's so difficult now with the way things are going, especially with cutbacks.
We wish we could offer you some good advice but we can't.
The only thing I can say is this, if you're gut feeling is telling you you're not happy with anything, then you fight tooth and nail for what's right.
There's so many people out there who don't deserve the help they get because they don't help themselves and the genuine have to take the flack for it.
we have total respect for you both and I bow my head to you.
It's a hard fight, but don't you give up.
We've been there,and we're still fighting and it does get tiring and draining.
My philosophy is this Lisa, " Walk a mile in my Moccasins ".
Actually it's a Native American saying but it's so true.
When people don't understand, it scares them sometimes.
Feel free to write anytime Lisa and if we can help with anything then please ask.
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