Good morning all ,well ,so what did you all think about the forum at guys in London ? lets hear from you as to your thoughts and views .

[Twinkly]

First of all ,I personally want to thank those at MPD (as was ) voice ,,for arranging this forum .iv attended a few nowadays and each time I learn a little more about this Illness the great thing that came across this time was the optimism of those doctors present ,as more research is being carried out and new drug therapies are becoming available .so maybe no cure as yet ,but strides forward in tackling the debilitating side effects ..we heard lots about fatigue and the horror of unbearable itching ,also the hot flushes that often come in the night to break sleep patterns so leave us more exhausted in the mornings ..Louise from Windermere gave an excellent talk about lifestyle changes ,diet changes ,also the need for regular exercise ,to lift the spirits .just walking her little dog on the rugged hillsides out in the fresh air ,helps her to cope with those sad days we all have ,,may I mention when the break off groups were at the end of the evening you didn't get to see on camera ,the family members group was amazingly enlightening as some couples sat together and shed tears ,,not actually able to speak .some spoke to my son Perry ,mentioning this site ,and saying the support it gives them in the privacy of their own homes .even tho they don't post ,unable to share their innermost worries .please let me tell you .you are valued members of our growing family .i hope I reach out and you feel the love we need for our continuing support .. Keep twinklin. Xxxx

[JediReject]

Well said my friend. . . Glad you were able to attend, nobody better ont patient side in my view. Love your wayward JR

[Twinkly in reply to JediReject]

One of these days .we will get to hold a forum near enough for you to attend ..I'm sure we need your pearls of wisdom as encouragement .hope you are feeling o.k. On the ruxolitinib .is it better for you than hydracarbomide ,? it seems from the speakers at the forum ,it has a beneficial effect on spleen size in many cases ..iv been taking it for 2 years ,feeling o.k. ,, loving this so called summer weather ..hows it at Blackpool ?? Cramming together in McDonald's !! Love mother hen !!

[JediReject in reply to Twinkly]

HaHa you're cheeky mother hen Twinkly. Thanks for building me up there but I mainly talk twaddle nowadays after years of tuning in to daytime TV. But if anyone wants someone to argue as to why they should leave their lazy thieving cheating alcoholic partner I'm your guy.

I could with something to 'supersize' me, but won't be rushing round to MaccyD's - other fast foods are available- too available in Blackpool judging by how many outlets there are.

It's very breezy again but there is a kite event down coast so they're flying high. Strange seeing a 50feet long octopus with all 8 tentacles yes tentacles wafting int sky. .

Unfortunately still no joy with reducing my large swelling in my abdomen, I'm exploring another solution and will let you know. .

Much Love JR

[mol56]

Yes, I agree, it was a very good evening. I joined on line - a first for me, never done anything like that before. Saw you twinkling in the audience.

I was encouraged by the amount of research that is going on and about the fatigue that seems to hit most of us, regardless of which MPN we have.

I am slightly disappointed that not a lot of research seems to be going on for those of us with ET JAK NEG and nothing was mentioned about the research into the CAL findings or did I miss this. I missed the first half hour.

Did anything come up about ET NEG in the breakout groups?

Yes, I too enjoyed Louise's talk on nutrition and It has encouraged me to walk a bit more. Off for a walk this afternoon. Thank you Louise.

Enormous thanks must go all involved in MPN Voice.

[andrewschorr]

Twinky, I loved meeting you and others and your video interview will be posted soon for all to see. We recorded about 10 video interviews with patients, family members and experts which will be posted over the coming weeks along with similar content from a recent US event in Chicago. Remember we are a community that spans the oceans!

I was honored that Patient Power could be a partner and we hope to do it again soon and worldwide.

Andrew

[bruddery in reply to andrewschorr]

Andrew. From Ireland I want to thank you for helping to provide the live stream. I learned so much. Beng able to put faces on people and hearing them speak was so reassuring. I could not believe that the time was up I was so engrossed!! Thank you. Bruddery

[Twinkly in reply to andrewschorr]

Hi Andrew ..really enjoyed our chat .we are such a friendly bunch you must agree now you have met us.im sure the future will bring us more times to build ties across the planet with this great technology ..how we learn from each other is definitely the way forward .. thank you ,I hope you enjoy the rest of your visit .safe trips. Keep twinklin. X

[andrewschorr in reply to Twinkly]

Thanks! On train now with Louise B to Oxenholme. Happy the sun is shining!

[andrewschorr]

Thanks! And off to Ireland in a few days on our first vacation there...Dublin, Cork, Dingle. Very excited and praying for kind weather!

[bruddery in reply to andrewschorr]

Enjoy your well earned holiday. I'm from not too far from Dingle and the weather has been relatively good by Irish terms ! Bit different to yesterdays in London!! Enjoy. Bruddery.

[bruddery in reply to bruddery]

And PS thanks for yesterdays excellent live stream. Bruddery

[andrewschorr in reply to bruddery]

Thank you!

[Hidden]

Hi Twinkly, hear hear!! Sorry was not able to go to forum as got a bug. Otherwise would have introduced myself to you but saw you as watched it online, you looked fab!! You positivity is an inspiration to us all. Thanks Liz C xx

[Inca]

It was great on line,spotted you Twinkly,so helpful for hubby and daughter who were with me.really need to get to one in person and talk as you all do afterwards,must be so uplifting.Glad you are well again,keep on that road.Sally

[ElsieR]

Hi Twinkly, it was good to meet up with you and Perry again, meeting old friends and making new friends is part of the pleasure of these meetings and of course, not forgetting the fresh info we seem to get each time. It will be good to see the Forum when it is online, it is hard to remember everything that was said, so that will be very helpful to old biddies like me!! Look forward to our next meeting and wish you well. Love Elsie x

[ElsieR]

p.s. Loved the photo but why are you holding up an old lady's 70th birthday frame? xx

[Twinkly in reply to ElsieR]

Elsie you are really amazing ..if only you were willing I think my perry would make you a good husband ,he loves to see you ,as I do !! You are a bloody miracle !! Looking forward to our next meet up ! Xx

[Twinkly]

I feel incredibly privalidged to be able to help you come together .my buddy's ..we share such a big reason for our closeness don't we ,, it's a journey we travel together .not that difficult to hold out a hand occasionally is it ? Whatever I learn you will know that's for sure ,,,,keep in touch ...

[Phelpsy]

Thanks Twinkly,, it was our first live forum ,I was glued to the laptop

With my hubby , couldn't believe how engrossed we both were ,, It helped us both as it's not a subject we talk about

knowing other's also understand what we're experiencing & we are not alone ,

Lots of positive attitudes , very uplifting

Congrats to all involved , x

Pam x