[Closed] MS Awareness Week

I dont feel these awareness weeks work as well as they coukd mainly due to lack of publicity. Its Thursday and this is the first I have heard of it.

[quote=nairnster ]I dont feel these awareness weeks work as well as they coukd mainly due to lack of publicity. Its Thursday and this is the first I have heard of it.

Yeah, me too! I follow the MS Society on twitter too...

My cousin has it. She's only 26. She's just about to qualify as a doctor. 😀

There has been some hopeful developments on MS lately. Stem cell treatment - reports of patients literally getting up out of wheelchairs and walking after years of suffering.
A BBC reporter, Caroline Wyatt, went to Mexico for the treatment >£60000. Not sure how it went. Probably a documentary to follow.
(Tom, there are NHS trails of the treatment, so hopefully not quackery 🙂 )

I have MS and this is the first I'd heard of it too.
Thanks for posting chvck.

Sorry to hear that chvck. Glad you're doing OK.

does seem funny that there's so many of these. My wife works for MSIF, a federation company working for and on behalf of local/national MS soceties to co-ordinate research, funding and awareness. She's not mentioned it. All about World MS Day on 31st May for them, but that's the day they came up with to co-ordinate globally.

Then there's MS trust (also UK) who have their Awareness week in the week 34th 30th April. I guess it makes sense for them to have different weeks, gets more attention individually and probably more income for patient support and research.

Thanks nedrapier, I didn't know about MS day or the MS trust awareness week! I also didn't know about MSIF so I shall take a look at their website.

It's an absolute twonk of an illness.. My Gran had it most of her adult life, my MIL has it and is wheelchair bound. One of my mates wife has it.

What we need is some awareness weeks to make us aware of the awareness weeks we are not aware of.

Thanks for posting. I wasn't aware, and spent quite a few years developing [url= https://www.mssociety.org.uk/ms-research/treatments-in-the-pipeline/ofatumumab ]this[/url], which has now started Phase 3.

Dreadful disease.

That's interesting TiRed, always interesting to see new treatments - especially ones where the "How it works" section isn't "we don't actually really know". Shall keep an eye on that one, although injections isn't ideal if it's good as that page suggests it could be then it'd be worth it.

also someone on heres wife is a sufferer of MS,hopefully he will see this.

My ex boss had it, used to come into work wobbly and weak, took them ages to properley diagnose she had it, due to a stupid gp, who wouldnt send her to a specialist, eventually after seeing 2 private specialists, she was diagnosed, a long and progressive illness for her.

project - Member

also someone on heres wife is a sufferer of MS,hopefully he will see this.

If it me I have seen it. Sadly since the time I bought a bike off you she is now totally dependent on me or the carers to do anything other than talk or randomly use the phone.

The physical part is hard enough to deal with, totally non weight bearing and very little control of her hands also including bladder & bowel function but the cognitive decline is hardest for me to cope with as she was very gifted in many areas but now is like someone with early onset dementia.

Sadly there is little to help anyone with Secondary or Primary Progressive MS & I have said as much to her MS consultant.
If you Have Relapse/Remit MS between bouts you are a contributing member of society anyone with PPMS or SPMS is just a burden.

10 years ago my wife used to get really angry with the smiling images and can do articles of people with MS on both the MS Society & the MS Org magazines as in reality even brushing her teeth was a major effort that often lead to a bleeding mouth or toothpaste in her eyes.

I'm sorry if I seem a bit negative but we have both been living with this horrible condition for the last 32 years.

And to cap it all we now have PIP. in 2006 she was given a life award of higher rate mobility & middle rate care disability living allowance (she has had the mobility allowance since 1998)

But now she is supposed to fill in a 40 page document on questions about her ability to prepare a meal wipe her own arse and dress herself herself amongst many other things.

Her GP, MS consultant, and a whole host of other medical professionals she sees are absolutely furious about the utter waste of money and bureaucratic farce this is for someone who is totally dependant on care to even eat a bowl of porridge.

If you can sense a degree of anger/frustration in my tone you are not wrong !!

The way the PiP/ESA assessments are now run should be a source of shame to those in power.

Of course it won't, but one can dream.

Mr Overshoot it was you didnt want to name you as such, as you may well have wanted to be private, so sad what this current lot in power is putting you both through, its a disgrace, also have a freind who is totally disabled , and haveing night carers taken away, due to PIP, and told to wear an continence pads, and another chap i know has also had a 40 page form and a 6 week wait for help from a disability charity to fill it in correctly.

May i wish both you and your lovely wife the best for the future, you both did make a lasting impression on me for your caring attitude and can do mentality.

also someone on heres wife is a sufferer of MS,hopefully he will see this.

Or me. My wife had it diagnosed about 5 years ago now. Its a shitter of a condition.

project - Member
May I wish both you and your lovely wife the best for the future, you both did make a lasting impression on me for your caring attitude and can do mentality.

That means a lot thanks 🙂

I'm having a bit of a tough time at the moment as apart from caring for my wife my mum is in Glan Clwyd hospital in the final stages of bone cancer 🙁

I can always offer kind words and sympathy to genuine people, bad stuff happens and those who should be helping, like dwp just make things harder and difficult for all.