Professor Mark Edwards webinar!

[Dot50]

Hi all, just read on FND hope.org that Professor Edwards, London based leading FND specialist, is answering questions on webinar, 22nd May at 9pm UK time. One not to miss I think!

[lorettapalmer]

Which website do i have to be on? FND Hope?

[Dot50 in reply to lorettapalmer]

Yes, go to FND hope.org, then webinars. Under his photo click on register. They will send an email with link to log on with on the night, also a link to ask questions if you want to. Cheers Dot

[lorettapalmer]

Many thanks. Yes I do have questions, been suffering with funcational gait disorder now for 7 years. Got used to dealing with everyday life, but cannot get the funding for neuro phiso which is what I need longteam. Hoping he can help me 😞

[RobertWT in reply to lorettapalmer]

Loretta,

Do not give up. You are not alone. There is always hope.

Here you are among friends who know what it (FND) is like, first hand. Hell, we are sharing the same (similar) path. Our days have the unpredictability and terrors. Here we share. We empathise. We care.

Please make a date with Professor Edwards' webinar. I had treatment with him in Jan/Feb. Mainly ultra physio. I am showing signs of improvement. Slowly (I have my make like a jellyfish and shivver on the floor days too. And fall etc). But there are good days too.

I had a great chat on the FNDHope coffee morning yesterday with Dee in Australia. We are ready to fight the ignorance and prejudice. FND or not, we are whole, valuable human beings who can contribute to medicine's understanding of FND. We know what it feels like.

So do you. 22 May may not change your life immediately, it could but it will HELP.

I shall be in a motorhome in the wilds of Pembrokeshire and am hoping that I will have access to wifi and be able to hear and listen.

Please stay well. Defeat the beast!

Best regards

Robert WT

[RobertWT]

Hooray and thank you Dot. The day just got better!

Lorettapalmer (greetings, to you, LP, from over here in Ireland) already asked the question that I had!

Will you be using zoom for Prof E's webinar? Tip - log in 10 minutes early as you may need to register on the app.

Could you record the session and make it available to view or download later.

Many thanks Dot and particularly to Prof E.

Best regards

Robert WT

[lorettapalmer in reply to RobertWT]

Many thanks Robert, I will be on at 8.50 on the 22nd and hope he can help me. Did you travel to see him for your ultra phiso? I’m in the south west, and now the hospital can’t do any more - because of the funding!! They told me that my neuro phiso had left the nhs yo go private. Cost per hour - £130!! I haven’t got that money - I’m Mum to my 12 yr old who has only known me as mum in the scooter!

Many thanks again / Loretta

Ma

[RobertWT in reply to lorettapalmer]

Hi Loretta,

I had a similar problem. I am in Ireland and the neurologists here either didn't want to know me or simply didn't recognise FND. They certainly didn't do anything to treat me. (Not even diagnose it, until after Prof E had told me what it was.) I was recommended to Prof Edwards by a neurologist over here. Early on, I had some physio which although it improved my lower body strength a bit, it did nothing to improve my balance. So it stopped.

I was fortunate that I had the money to travel to London to see Prof Edwards. My benefit!

(The tax system over here allows me to claim back the treatment and travel costs against my income, a small bonus, but very welcome!)

£130 an hour? In Dublin I was charged €400 (about £350) for an hour of neuro-mumbo-jumbo and no diagnosis, prognosis or care plan at the end.

Keep applying to the NHS. See if there are any charities which can help. Keep positive.

You are doing a tough enough job already - bringing up a 12 year old! FND is an added nuisance. But there are new ideas, new treatments and new therapies being developed all the time.

Enjoy the 22/5 webinar. I have just learned that where we will be staying there is no wifi! So I am hoping that the webinar will be recorded and put on the website for later viewing.

Keep positive, keep going.

Best regards

Robert WT

[Dot50 in reply to lorettapalmer]

Hi Loretta, sorry to hear you can't have neuro physio. I also have functional gait disorder, my left leg and foot twist away from the ground if I try to walk-had it for years and getting worse. Tried neurophysio on NHS but not intensive, just weekly, half hour appointments so didn't help. Now waiting to see prof Edwards for 5 days on his intensive programme but being held up with red tape re funding as I live in Wales. Long process! But as you live in England, and there is no other similar help where you are, could your GP refer you to prof Edwards?

I understand your feelings around being mum to a twelve year old , I have 3 boisterous grand children who I would love to run around with, but this condition is so limiting and frustrating! But as Robert says, never give up hope, and enjoy all the things that you can do. Best of luck to you.

Dot

[Dot50 in reply to RobertWT]

Hi Robert, yes, use zoom for the webinar. But it should be on YouTube afterwards - in fact I've just checked, and all Dr Jon Stone's past webinars are there if you want to see them.

Good idea to join webinar 10 minutes before, to make sure of connection etc. In the past I've dialled up from my smart phone using the number they give in their email when you register so maybe you could do that when in Pembrokeshire. Enjoy your holiday and best wishes for your continued improvement!

Dot

[lorettapalmer]

Thank you both, for your kind words. I have been going to Southmead hospital in Bristol and have been lucky enough to have a cross agency of help, neuro phiso, occupational therepst and neurologist. In the early days I would once a month but then it changed to 6 weekly and then 6 monthly appointments. As you said Dot Phiso short team doesn’t really do anything, but they did teach me how to get over many problems and I can at least help my poor husband with some cores like dusting and putting the washing away.

I know that i was very lucky to get this but they didn’t seem to noticed that I wasn’t really getting any better, just learning to cope with it!!

I’m hoping that Edwards will help me get that phiso. The gp refereed me to my local hospital- Southmead was 40 miles away, so 80 miles round trips when i wasn’t really getting anything out of it. The local hospital have passed my case around all the phiso areas, but cannot offer me what I need on a regular basis.

I won’t give me, but don’t see that finishing line either. Thank you again for listening