Any hope out there

[Maggi70]

Hi everyone what I would like to know if any one has ever recovered from FND and how they did.

My husband is really struggling and I want to help him.

Maggie

[andyglasgow2016]

Hey Maggie

Firstly .... the fact you are looking for help and advice is great. Your husband is so fortunate to have someone who understands and wants to help.

People have different outcomes of fnd and different symptoms so it's hard to really know the overall "recovery"

Have peoples life improved- for some- no... for me, yes

I've gone from wheelchair use, living with parents, struggling to do anything to now living independently, cooking for myself (takes ages mind!)... being able to go out more and using two sticks...

I see my consultant- dr Murray - who is loving how I've come along - dr stone thinks I can get down to 1 stick...

So for me... that would be a successful process over 3/4 years

Others can tell you their results...

My consultant hasn't seen anyone personally recover but because it's a large umbrella term it's very different.

Hope you find encouragement here tho from this group... I certainly have.

When you post a question etc if you put next to your name what city etc you are from as maybe there is someone near you who can be and face to face source of support

Take care

God bless

Andy (Glasgow)

[Maggi70 in reply to andyglasgow2016]

Thank you Andy for replying and letting me know your story.

I am in Aberdeen and we have had no help apart from look at the website.I am going to try and get him referred to Dr. Stone.

Take care

Maggie (Aberdeen)

[andyglasgow2016 in reply to Maggi70]

If I can be of any help let me know

I'm up in couple of weeks to Aberdeen visiting parents. If I can come share advice or answer questions, may not have answers or any of them at all, but sometimes a chat with someone can help. I won't be offended at all if you decline

Andy

[ViktoriaC in reply to andyglasgow2016]

Hi Andy, is Ros your consultant? She is lovely but she keeps changing my appointment which now isn't until September 😣 Last time I saw her was last September! Glad to hear you've made progress. I feel like I definitely have too but I still rely on the wheelchair for leaving the house. How often do you get to see her?

[andyglasgow2016 in reply to ViktoriaC]

Hey! I was every 6 months twice then this time was moved to 9 months. She can't offer much help as she's pleased with self progress but I'm hoping on Tuesday can get this physio sorted either with her or dr stone. I love seeing ros as she actually takes time to listen and ask you things. Her clinic always runs late but I'm ok waiting because I know she's so caring and encouraging it makes it worthwhile

[nurmihusa]

Does any one recover from diabetes? Well, no, not really - but can a diabetic's life get better and symptoms be minimized and even medications minimized? Yes!

Okay, okay, it's not the SAME thing...but the chronic nature of it is not dissimilar.

[Hidden]

Maggi70.

Dan from the USA.

Nurmi's analogy to diabetes carries some truth for me. He is more of an optimist about it than me but I give my friend credit for that part which makes him so loved.

Twenty four years into this complicated mystery which keeps changing and I can tell you two things:

Doctors have absolutely no idea what they are dealing with overall. Some things they do can relieve some symptoms. Some things I can do relieve some symptoms.

The second thing comes directly from my heart. My wife could have written the same words you wrote many times over as she has carried the burden of watching this process. My kids have suffered too.

But we are still together and we still take care of each other. So we learn how to cope and then we cope together.

I found this community to preserve my sanity. The people here have delivered on that need. So I hang around because these folks keep talking to me and they keep fighting for themselves and others.

I will be 62 years old soon. I look forward to that day now with my family and this community.

Without all of you, the struggle would be really hard. We are here and we listen. We can bring much light into the room that medicine just can not give us right now.

Hope lives. Tell him we know and we reach out as friends. Every single day.

We open our world to you.

Dan / Seattle

[nurmihusa in reply to Hidden]

How DARE you call ME an optimist?! ME of ALL people?!

[nurmihusa in reply to nurmihusa]

Snortle.

[Hidden in reply to nurmihusa]

Now I am laughing.

[nurmihusa in reply to Hidden]

Have to keep our sense of humor about it. Yep.

Today my condition is battling with me, trying to keep me from going to my next neurobiofeedback session. The usual: shaking, crunching, in ability to stand up straight.

Sigh...

[Maggi70 in reply to nurmihusa]

Thank you for the replies.

Can you tell me what is the bio feed back about?

Thanks

[nurmihusa in reply to Maggi70]

Here's a couple links.

en.m.wikipedia.org/wiki/Neu...

psychcentral.com/lib/neurof...