Radicava (edaravone) approved by the FDA in the US

[Jer788]

Hi

Hi Kayleigh, I received the same knock back from 2 other people receiving this. They want to tell you how well they’re doing but don’t want to share any contact details as the charity cannot produce the drug. Pretty pathetic circumstances.
I’m now in the UK, Central London and getting things sorted out hopefully.
Hope you’re well Jerry

Do you have the charity's contact details to share with us? (as requested by Daniel, in the post above yours).

Best wishes
Kayleigh[/QUOTE]

[Kayleigh]

Hi Jerry,

Welcome back to England - I hope the journey went smoothly for you and you were thoroughly pampered by the air hostesses!

Like you, I have seen many posts on this forum promoting the effectiveness of the drug RCH4. However, as the charity has run out of money, it remains to be seen if it will ever become available for new patients!

I hope you are ok, especially after such a long trip from Thailand.

Hopefully you are able to get out and about with your brother for some essential liquid refreshment (I here the prices in London pubs are shocking though?!) Its not the same as a beach bar in Thailand I know, but I expect your brother knows a few local friendly pubs where you can enjoy a drink or three!

I have been doing a bit of googling (one of my favourite hobbies these days LOL), and found some info which might be useful for you - about wheelchair hire in London and the Freedom Pass (free travel on buses etc).

(Just ignore information in the next 2 paragraphs - if you find it boring/if you know about it already )

1. Freedom Pass:-
https://tfl.gov.uk/fares/free-and-di...l/freedom-pass

2. Hopefully you will be able to get a wheelchair free from your local wheelchair services. In the meantime, if you havn't got a wheelchair already, and wish to hire one, here is some information which might be helpful:-

http://https://www.redcross.org.uk/get-help/borrow-a-wheelchair

https://www.visitlondon.com/travelle...hire-in-london

... oh, and this might be more interesting subject matter to read - probably more interesting than wheelchair hire and free travel passes anyway! LOL:--

https://foursquare.com/christiane/li...-bars-and-pubs

I hope you brother is looking after you well - tell him that us peeps with MND always get (1) first choice about what to watch on the TV (2) a priority pass for the bathroom, and (3) a foot massage every day - but, admittedly, my hubby says I'm pushing my luck when I remind him about that one!! LOL

Cheers!

Kayleigh x

P.S Make sure you are wearing clothes that are warm enough!! - it's definitely not shorts, t-shirt and flip-flop weather over here yet, not most of the time anyway!
TTFN, love from clucky mother hen x

[shrew]

Welcome back Jerry, hope the journey wasnt too horrendous. Flights and airports are stressful

[Lynne K]

Welcome back to the UK Jerry and good luck getting your doc, consultant and services up and running. Lynne

[Deb]

Welcome back Jerry,

It must have been hard to leave but I hope you had a smooth journey and are accessing the care you need here .

Stay warm,
Love Debbie x

[Jer788]

Hi Kayleigh, and thanks for all the research re. wheelchairs and travel I’ll have to look at this though I have to say I’m not too adventurous regarding travel down here. My brother is looking after me very well so own room, new reclining bed and tv. Getting a local sorted out may wait till the weather gets a bit warmer.
While on the subject of travel I must have a little rant. I flew BA Business back to the UK and while the price is competitive the service and comfort reflect how poor they are compared to the Middle East carriers. I had assistance in Bangkok which was excellent but back in blighty poor. Off the aircraft ok onto a golf cart where unlike boarding there were 9 people requiring assistance compared to 2 boarding. Got up to the carousel where my fellow travelers got their luggage and headed off. I needed help with my case and to get up to my sisters car but nobody was available. Lots of able bodied people using wheelchairs to get through immigration quickly which I think is very sad.
Good to be back anyway xxx

[Jer788]

Hi Debbie, thanks and yes I’m on it. Trying to access an OT and the South London MNDA branch but we’ll get there. I intend to be a lot more active on the forum and also explore any clinical trials which maybe available.
Thanks xxx

[Jer788]

Thanks Shrew, you’re telling me. When I was working I travelled a lot and didn’t mind it, now it’s just so bloody stressful.
Thanks x

[Gillette]

Got up to the carousel where my fellow travelers got their luggage and headed off. I needed help with my case and to get up to my sisters car but nobody was available.

Hi Jer778,

I have flown with several Middle Eastern airlines, but not Emirates, and have always been left at the luggage carousel. Maybe that's because I flew economy rather than business class.

[Kayleigh]

Hi Jerry,

It must have been great to be welcomed by your sister at the airport, especially after such a long journey!

Such a let-down about the lack of assistance with your luggage! Airport assistance for passengers who need it shouldn't end at the luggage carousel - it's not like we can sit on our suitcase and then ride on it out of the airport like it's a magic carpet!!

Very disappointing that you didn't get all the assistance at the airport you needed! Sometimes there are kind people out there but, unfortunately, there are selfish ones too - it's sad that some people were getting assistance who shouldn't have been, at the expense of people who genuinely need it.

I hope you find lots of kindness from the people you meet, now that you have settled into living with your brother.

It sounds like your brother is as kind and cool as you are! - and it's great that you are already kitted out with a recliner bed and your own TV - all you need now is your own mini-bar and cocktail waitress, and it will be as fancy as the Ritz! .... and, if I lived in London, i'd volunteer for the job! -they don't call me 'Cocktail-Shaker Kayleigh' for nothing, don't you know?! I've been known to do quite a bit of cocktail waitressing, in my time - and even on Rollerskates! - admittidly that was a very long time ago, but I can still mix a mean Martini!

You are doing the right thing by taking things easy ...and no need to rush into reading all that bumf about travel passes etc - I posted the links to the websites, for future reference if/when you need it.

The good thing about living in a city is that you've probably got most things you need like shops etc close by, so you won't need to travel far for things if you do want to pop out from time-to-time.

The main thing is that you put your feet up and have a relaxing time, perhaps getting re-acquainted with the TV channels over here?.

I hope you are ok and that you and your brother have an enjoyable bank holiday weekend.

Cheers!
Kayleigh xx

P.S Please get lots of rest and make sure you are keeping your energy levels up by eating and drinking regularly xx TTFN, love from 'clucky mother hen' xx

[Jer788]

[


Hi Kayleigh, yeah great to see the family and get settled in. I’ve contacted Evelyn at mndsouthlondon so will see what’s going on. I suppose the assistance thing is a tricky one for airlines as the last thing they need is complaints from people who do require assistance.
It’s lovely and bright here today but the ambient is going to take some getting used to.
Have a great BH weekend and if I ever go from beer to cocktails I’ll give you a shout xxx Jerry




QUOTE=Kayleigh;89242]Hi Jerry,

It must have been great to be welcomed by



your sister at the airport, especially after such a long journey!

Such a let-down about the lack of assistance with your luggage! Airport assistance for passengers who need it shouldn't end at the luggage carousel - it's not like we can sit on our suitcase and then ride on it out of the airport like it's a magic carpet!!

Very disappointing that you didn't get all the assistance at the airport you needed! Sometimes there are kind people out there but, unfortunately, there are selfish ones too - it's sad that some people were getting assistance who shouldn't have been, at the expense of people who genuinely need it.

I hope you find lots of kindness from the people you meet, now that you have settled into living with your brother.

It sounds like your brother is as kind and cool as you are! - and it's great that you are already kitted out with a recliner bed and your own TV - all you need now is your own mini-bar and cocktail waitress, and it will be as fancy as the Ritz! .... and, if I lived in London, i'd volunteer for the job! -they don't call me 'Cocktail-Shaker Kayleigh' for nothing, don't you know?! I've been known to do quite a bit of cocktail waitressing, in my time - and even on Rollerskates! - admittidly that was a very long time ago, but I can still mix a mean Martini!

You are doing the right thing by taking things easy ...and no need to rush into reading all that bumf about travel passes etc - I posted the links to the websites, for future reference if/when you need it.

The good thing about living in a city is that you've probably got most things you need like shops etc close by, so you won't need to travel far for things if you do want to pop out from time-to-time.

The main thing is that you put your feet up and have a relaxing time, perhaps getting re-acquainted with the TV channels over here?.

I hope you are ok and that you and your brother have an enjoyable bank holiday weekend.

Cheers!
Kayleigh xx

P.S Please get lots of rest and make sure you are keeping your energy levels up by eating and drinking regularly xx TTFN, love from 'clucky mother hen' xx[/QUOTE]

[Kayleigh]

.... I'll keep my cocktail waitress uniform on stand-by! - just in case LOL

Cheers!
Kayleigh x