Sunday, 22 August 2010

MS and me.and maybe you.

MS has been in the news a lot lately,with new treatments being heralded as breakthroughs in the treatment of this evil disease,sativex is an oral spray made from cannabis extract,and is aimed at progressive sufferers like myself.also funding has been announced in the States and Canada in the research of CCSVI,( chronic cerebrospinal venous insufficiency, dear god who thinks these names up.) a condition linked last year by an italian doctor dr.Paolo Zamboni who reported abnormalities in the veins draining the brain and spinal chord in MS sufferers,his ideas have caused widespread debate.also the furious debate about the threat of MS nurses under own dear lynda is now semi-retired and it looks as though there is a chance she will not be replaced.MS nurses are OUR first line of attack in out treatment of MS,they liaise directly between our consultants,and our GPs,physios,speech therapists,and other help we need.Lynda is much loved by north norfolk MS sufferers.she will be missed by many.
Now,WHY should YOU,dear reader care?yes its very interesting to those of us with MS,but you don't have it.or do you? many people who have MS just NEVER know they have it.some with very vague,faint,symptoms.others it never even causes any concern,and the only time it emerges they had MS is if an autopsy is performed after death. those are the lucky ones,but sometimes it strikes so rapidly. ask wendy,whose lovely daughter emma has been featured in this blog on a number of posts,ask my good friend Herrad,who suffers daily,or her husband and loving carer richie.or my second mom lucy,bless her,whose beloved son alan died.more and more new sufferers are diagnosed daily.100,000 is the new and revised,updated number for MS sufferers in the UK alone,that figure from the MS society,and it is steadily increasing.and every new sufferer needs in north norfolk there is a group,LAMS,which is a lifeline for has been mentioned on this blog,my lovely friend Myra is a volunteer is based mainly in the east of our region,now there is talk of a west branch of LAMS being started up.maybe around Holt area? at the moment it is talk.a lot needs to be looked into.ideas for what people would like are welcomed by roger and his colleagues,so,if you have MS,or are a carer,or you know someone who has it,please.ASK THEM WHAT THEY WOULD LIKE IF IT WAS IN THEIR AREA. what help.amenities,information etc.THEY would like to see in a new MS support group. feel free to comment,or mail,or contact me on facebook,or leave ideas on LAMS facebook site. lastly,why should YOU CARE?? well,i was 55 when i was diagnosed,young children are being diagnosed weekly if not may be someone you know tomorrow who is diagnosed. it may even be you. and i pray to god it won't be. take care all.


jack69 said...

Hey Mort,
thanks for a heads up. Amazing how little the neophite knows. It must be terrible to be forced to learn the hard way.

I do hope something is discovered soon. (But I do agree about the names!)

From over here to over there, the best to you and mum!

Sybil said...

Thanks Mort as always for these wise words. we can never tell who of us may develope MS. I have had a friend who died fairly young leaving three little children, and yet another friend who has lived with MS for last 25 years and is still able to work and get is such a complicated disease. I pray always that some treatment will be available that will prevent and cure MS sooner rather than later.
much Love Sybil x

Missy said...

I am kind of worried as far as my health is concerned. I was diagnosed with optic neuritis when I was 14 and I hear that 85% of everyone diagnosed with that end up with MS. I really need to meet with my MD and just haven't got around to it... Not something I should put off, I know.


jun said...

dear morton my daughterjust lost her sisterin law. renee was an ms suffer for many years butdied of cancer of heart lungs and liver! after only a 6 month interval between diagnosis and death.
she was such an inspiration to us all.
when i get my next full testing i will ask for test for ms.
my own mother is 81 and sheis a delight to me. so glad your mum is greta that is so wonderfull love jun

Lucy said...

I learned a lot about MS when Alan was alive and had it but As I have said I think You are way ahead of the US. I would like nothing better than to see a cure for you and that person that makes you happy, but you and I both know that is unlikely. You and her seem to be doing just fine. From your US mom. Give your mum my regards.

Herrad said...

Hi Mort,
Wish research into MS was not so profit motivated maybe then the cause may be found as only then can there be work done on a cure.
Thanks for your post.
ps a friend here wants info on sativex do you know anyone that uses it?
Does anyone have any knowledge of it?