General Chat

I am posting this as my daughter Caroline is a sufferer, she was diagnosed at just 18. Please keep nudged for me for today, thanks

Sue x

'Few know multiple sclerosis facts'
Last Updated: Tuesday, 21 April 2009, 07:18 GMT- Search: Multiple sclerosis awareness

Few people know that multiple sclerosis (MS) mostly strikes people in their 20s and 30s, according to a new poll.
A survey for the MS Society found only a quarter were aware that people aged 25 to 34 were most likely to be diagnosed.
Four out of 10 (40%) members of the public could not name a single symptom of MS, which include loss of sight and mobility, fatigue, numbness, bowel and bladder problems, muscle stiffness and spasms.
Some people thought MS led to brittle bones, bad teeth, phlegm and loss of appetite.

The poll of more than 2,000 people also found 6% attributed MS to "public health issues" such as obesity, poor diet, smoking or germs.
Meanwhile, four out of 10 (40%) thought all people with MS ended up in a wheelchair whereas just 20% do.
MS Society chief executive, Simon Gillespie, said: "This survey gives us the clearest picture yet of what people know - or don't know - about MS, and the results are a cause for concern."
The survey was released ahead of MS Week which runs next week.
TV presenter Lorraine Kelly said: "As I have a relative with MS, I know from personal experience that there are myths and misconceptions which make life even tougher for people living with the condition. I would urge everyone to make an effort to find out what MS really means to those who have to live with it day in and day out."
More than 85,000 people in the UK have MS.

Sorry to hear that Sue
Have to admit to being one who does not know a lot about this disease
xx

MS Week 27th April - 3rd May 2009
MS Week is a chance for the MS Society to get loud about multiple sclerosis (MS), raising awareness of it by reaching out to people who don't know much about it.

My mum was diagnosed with this c1945 when she was 31. (it was called 'disseminated sclerosis' then). It began with loss of vision in one eye.

Two years later I was born.


She was in remission for several years before becoming chairbound. She was a fantastic fighter despite her handicaps and lived with great dignity to the age of 87.

There is always hope.

nudging for Sue...

Well meaning nudge: it's important.


Jac xxx

THERE AREA LOT ON THIS WEBSITE ALONE

WHO ARE FRIGHTENED TO TELL THEY HAVE MS
ITS SUPORT AND OUR FRIENDSHIIP THEY NEED

I work for a lady with MS. She is now wheelchair bound, has no use in her arms/hands etc. She is able to eat (her husband feeds her). Mind wise, she is still very much on the ball as she always was. A carer goes in each morning to get her showered etc. I don't go there if I have a bug/cold etc for obvious reasons.

She is such a lovely lady and has lost none of her sense of humour. She just gets very frustrated that she can no longer do things for herself.

Sorry to hear about your daughter Sue.

n

Thank you to those who have read and commented.

Just to say that Caroline is 31 this year :-)) She goes drinking, clubbing and tries to live as normal a life as possible. She has good days and bad days but she is so positive most of the time. Her speech is affected and she finds it frustrating that some people do not take the time to try and understand what she is saying. Most days speech isn't too bad but stress makes it worse. She holds down a full time job (with assistance) and we are all so proud of her.

She has suffered terrible discrimination though which I find very distressing as her Mum. She was ostracised by fellow student nurses when she went to Uni in case they 'caught' MS themselves.

All I ask for is people who didn't know what this terrible illness entails is to think a little more when they meet someone who has MS.

Thank you so much

Sue xx

I am glad to hear Caroline is still up there with the rest Sue and doing her own thing. :}




Now I know of 3 in the same family how suffer this,,,,one only has a mild case which was labled MS and has progressed no further,,the eldest is none active and housebound,,the middle one unmarried is now in residential care ages are,,63,61,and 58,but all have great attitudes........
Its never been discovered why 3 siblings should suffer MS........

nudged

nudged...

your daughter sounds amazingly strong. you must be so proud of her!

mamiddau,
xxx

I know two people with MS and I have to admit I don't know a great deal about it. Both people I know are generally in good health and manage very well although I notice that one uses a walking stick on occasion. I wish your Caroline the very best, Sue. I'm sure you have every right to be proud of her.

Sue xx

Thank you :-))

Just shows that a person's disability doesn't define their personality!

Sue x

Hi Sue,

My Mum started the symptoms of Multiple Sclerosis when she was about 18. At that time not a great deal was known about the illness, and after a whole raft of treatments and tests she was diagnosed with MS.

She is now in her mid 70's and like most sufferers has good and bad days. On a good day she still drives. She has only in the last year started to use a walking aid (a little three wheeled trolley) and doggedly refuses to give in to the debilitating effects of the disease. On a bad day she will just fall flat on her face! Poor soul is just a mass of bruises, and as she ages it takes her a bit longer to recover from the bad days!

However, she manages the illness very well and counts her blessings that she isn't as bad as some with the disease, and it takes her nearly a week to recover from visists from her grandchildren!

I am not surprised at the results of the polls. It is a very strange indiscriminate disease which attacks different people in different ways. I once heard some people in a lift when I was on holiday talking about the lady that was drunk from morning to night. A little while later, I realised they were talking about my mum! I was incensed, searched them out and told them a few home truths - I was about 12 at the time, but that has stayed with me all those years.

Thank you Sue for doing this in a bid to raise awareness, and please pass on my very best wishes to Caroline.

X

I heard something the other day which stuck in my mind.

"I am not measured by my disabilities but by the way I handle them".

So true.

Sue x

My best wishes to your Mum, Tony. She sounds an amazing lady,

Sue x

Thank you Tony :-))

Some of Caroline's symptoms:

Loss of sight bilaterally for between 12 hours and 14 days
Loss of feeling in her mouth - danger of scalds
Loss of feeling anywhere on her head and body
Tremors
Acute pain in limbs and abdomen
Weakness in hands and legs
She is now colour blind in one eye
Loss of balance
Affected speech
Fatigue
etc., etc.,

BUT

she lives life!!!!!!!!!!!!!!

Sue x

We have family friends and the wife has had MS for about 20 years. Their daughter was one of my bridesmaids as a little girl and sadly she has MS too now. It seems they have a really rare inherited form of the disease. Both of them are in wheelchairs and the husband/father of the family cares for them both.

It is strange because if I stop and think about it I know quite a lot of people with MS. I live in a small village but there are several people who have the disease who live in the village. I also know some in Guiding and friends online. There are more cases than a lot of people realise.

Sue