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Interesting website for progressive MS

This is interesting… esp as it’s only for progressive MS and works at finding treatment etc… http://www.progressivemsalliance.org/ Pat xx

Thanks Pat. Interesting and encouraging. There is (was?) a video somewhere on this site from a conference on PPMS which underlined the fact that research resources would now be directed mainly at PPMS since there had been so much success with finding inhibitors for RRMS. Sadly, any really useful outcome may arrive too late for some of us; it takes years of work. But it feels comforting to know that people are working flat out for us and those yet to join our ‘club’. Kev

I feel the same Kev. I’m 60 & doubt very much if they’ll be a cure in my lifetime… although they might find treatments that will help. But to future generations it will be like polio or smallpox…something in the history books thank God. Pat xx

Thanks, I’ll have a look. As you’ve said it probably won’t do many of us much good but if they do find treatment I’m sure many will benefit.

Cath xx

[quote=“Snow Leopard”] I feel the same Kev. I’m 60 & doubt very much if they’ll be a cure in my lifetime… although they might find treatments that will help. But to future generations it will be like polio or smallpox…something in the history books thank God. Pat xx [/quote] Or even cancer. I’ve already had the benefit of the giant strides they’ve made with that.

Thanks for the link Pat and I think I feel the same as everyone else… where were these people 10/20 years ago?! The site looks well constructed and they seem pretty serious

I’m so glad to see there are people that feel we should get a bit of the priority/attention (and that remark is not to say that having RRMS still means a massive leap away from an actual cure sadly) but like a few of you have said, it might be a bit late for some of us… personally, I feel like my body seizing up day by day and it happens no matter how hard you try to stay positive I’m only groaning as I had a bad day today, fatigue hit me really bad about 10 mins before I was packing up tp go home - there’s nothing like the attention you get staggering round the office like a drunk!

Anyway, tomorrow is another day and I’ve signed up for the newsletter.

Sonia x

Oh Sonia it’s awful when you hit the fatigue wall when you’re not at home and able to slump on the sofa. I’ve done the drunken stagger a few times too and felt like a real fool. Hope you get chance to rest up today xx

Yay, no woozy feelings today and managed to get past the glass fronted office without stumbling and before Rob pulled up in the car to collect meand I was still packing up when he left the office - usually we leave together and he has picked up the car by the time I can get out there.

Sonia x

Normally, reading about research initiatives into progressive MS puts me into gloomy mood. I have howerever come across this video; http://www.youtube.com/watch?v=1Mf3zBMFVQE which is very interesting. It comes from a professor at the Edinburgh MS research centre. It looks like it’s a state of the art centre with different strands of research consolidated on the same site, it is supported by JK Rowlings generous donation in 2010. I think if a breakthrough discovery is made it will come from the Edinburgh Centre. Quite inspiring, worth listening.

Normally, reading about research initiatives into progressive MS puts me into gloomy mood. I have howerever come across this video; http://www.youtube.com/watch?v=1Mf3zBMFVQE which is very interesting. It comes from a professor at the Edinburgh MS research centre. It looks like it’s a state of the art centre with different strands of research consolidated on the same site, it is supported by JK Rowlings generous donation in 2010. I think if a breakthrough discovery is made it will come from the Edinburgh Centre. Quite inspiring, worth listening.

Hi Maryla I haven’t seen you on here before. Is that because I’m not observant or you’re new here. If so, welcome to the group, please start a new thread and tell us a bit about yourself. The people on here are very friendly, welcoming and supportive, I hope you visit regularly.

Cath xx

hi Cath, thanks for the welcome but I’m not new just that I don’t post very often. Having said that I come in here daily. I’m SPMS and as most posts here are about DMDs or steroids or medications for pain there is not much I can contribute. I try to stay in touch with various aspects of MS and have learnt huge amounts from this forum. Were you able to listen to the video on the research and if so what did you think? Best wishes.

Hi Maryla, sorry to jump in on your chat with Cath, but I watched the video & learnt a lot. Also made me realise that they seem to be getting close to treatments for progressive MS. You won’t find posts about DMD’s on this board… we are all in the same boat on that one. We have a few users on here with SPMS and you are very welcome to come on here… please post about anything at all! Thanks for the link, Pat xx

Hi from me too Maryla

I did watch about 10/15 mins of your link last night and I will go back and watch the rest, as it was really interesting, I just needed to hit the hay last night.

Thank you, it is starting to feel like things might be on the move for PPMS

Sonia x

Sounds great that PPMS is being targeted it was good to here Cameron say about Alzheimers research in the week. All of these disorders are nuerological and reasearch in one area often throws up something for another, fingers crossed and when my legs go into spasms they will be crossed as well.

I’ve not been able to open it for some reason, will have to turn the computer on. I don’t seem to have trouble with YouTube on there but do on my kindle. Or I will have to bribe my daughter away from the desktop, I’m sure her fingers have become one with the keyboard. Hearing that is part of the white noise in my house, it just blends in with the freezer.

Take care everyone, I’ve just finished the ironing and I’m sitting down with a well deserved cuppa.

Cath xx