Fnd Hope Magazine

[shurdygirl09]

We are doing a Magazine and we are wanting all your ideas and What you would like to read and see inside the Magazine. So get your thinking Caps on and give us your thoughts. ☺

[DMA1664]

As a sufferer myself I know how hard life is and can be. I'd like to read a 'good news' section with stories of peoples successes no matter how small or a 'top tips' section on how we can get ourselves better or make life easier etc. Good luck. Dave.

[salfnd in reply to DMA1664]

Thank you Dave. Great Suggestions. Will Pass these on. xx

[123lisa]

Hello I would like to read stories about FND suffers who made a recovery or at least got some quality of life back,

I would like to read about reserch of any new treatments, also things to help us like mobilty aids, benefit help,

Altenative treatments that may help my list goes on

[shurdygirl09 Moderator Volunteer in reply to 123lisa]

Thank you Lisa, Great Ideas will add to our list ☺

[englishmumof2]

Guidelines to claiming pip, who can help with forms, contact number etc. What's worked and lasted working ! Meds vs therapy. Helpful Drs e.g. In hertfordshire my surgery has been great that way maybe we can list good gps and make a list so if your in herts near me you can register at my gp! That way gp gets more experience and they can help us more learning from us! How to guide... like the pace program or spoons

Sounds good but how many spoons is different you to me... Patient story of the month ....

[Shilly2 in reply to englishmumof2]

Hi. Whereabouts in Herts. Are you? My daughter has just been diagnosed and our doc freely admits to not knowing anything. She'll be learning alongside us. If we could put her in touch with another doc it might be helpful.

[englishmumof2 in reply to Shilly2]

Welwyn

[Shilly2 in reply to englishmumof2]

Not too far away. We're in Tring.

[englishmumof2 in reply to Shilly2]

Awesome! My gp has recently kind of given up 😱. Even prof Edwards said there’s nothing more they can do unless I get really ill ....

[Shilly2 in reply to englishmumof2]

My daughter's is still at the 'no idea what to do' stage at the moment. Letter from neurologist has only just reached her and we haven't seen her since then. What do they constitute as 'really ill'?

[englishmumof2 in reply to Shilly2]

There’s 3 types

Type 1 gets better

Type 2 is you have constant waxing waning symptoms

Type 3 is suffering daily bad symptoms eg guessing constant pain, vision issues, mobility issues but they can be treated in hospital with various therapies..

That’s how I understand it. Me I’m number 2 so unless I need pain meds or increase the antidepressant to stop my body jolts .. there’s nothing they can do. So it’s down to self help, meditation, pacing, lots of rest and sleep!

Has she seen prof edwards to confirm diagnosis . What are her main symptoms that cause the problems for her??

Feel free to also private message me!!

[shurdygirl09 Moderator Volunteer]

Great feed back Thank you , Will add all this to our list ☺

[cgarff]

OH cool! Love this idea.

1. What can we do as sufferers to help Dr.s find answers so that they can help us? As well as the other way around. Are there good sights that we can look up around the world that we can volunteer to take place in studies & Treatment trials so that we can further along the process?

2. If possible please include information for places around the world.. Such as the before mentioned PIP.. can SSDI in the US be included etc?

3. Locations of treatment places, or types of treatment ideas that can be attempted in our own homes if treatment is not offered close to home. Or options for local GP's, therapists etc.. to try or communicate with to create your own self help option.

4. Definitely success stories. Always so nice to hear things that worked as opposed to not working.

Thanks for doing this! Can't wait to see what comes up.

[shurdygirl09 Moderator Volunteer in reply to cgarff]

Thanks for your suggestions, I've added them to our list. ☺

[Silver_Flower]

This is fantastic!!

1) I’d like to read about how people coped and got on the way to recovery

2) crisis management- what we could do to help ourselves when things have gone out of control

3) little tips people use, e.g if you had spasms, what helped them to ease, etc

4) maybe if doctors found new treatments, they found out new things around FND, etc., i.e. I’d be encouraging to know how things/science is progressing to treat patients like us

5) It would be nice if we could access a list of upcoming talks from FDN specialists, FDN events, etc.

Thanks😄