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.

Unfortunately, it's not just the general public who seem to have a 'fixed idea' on MS.
Quite a few years back, my nephew was offered Beta blockers. 'Great' he thought, 'Then I can carry on working'.
Nooo the health authority expected him NOT to work, so that he would be at home to receive the monthly delivery of the drug!!
Despite my nephew arguing that there seemed little point in him taking these very expensive drugs if he was expected to then sit at home in poverty on benefits, unable to afford to go out!!
Nephew sorted it eventually by giving his grandmother's address for the delivery of the drugs - she then posts them on to him - and he went off travelling around the world with the MOD!!!

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.

nudge with love xxxxxxx

Nudge.

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.

this has been something ive always had sympathy and understanding for since i was a teenager,
always thought of people with it , if olnly they could make a difference find a cure, or help , or something

A very ggod friend of mine nursed her husband, who suffered from MS, for over 20yrs. He was only in his middle 20's when he was diagnosed. He managed to work for some time before becoming wheelchair bound. She didn't get much help care wise for him, and she had to hold down a full time job and care for two children, as they had a mortgage to pay. She did a marvellous job, and both her kids went to university and have done well for themselves. They are a credit to her.

She is now actively involved in a local respite home for MS sufferers, and is very passionate about highlighting the lack of care given to carers.

nudge with ((((hugs))))

Love

Daff xxxxxx

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

Nudged with loads of love and (((((((((hugs))))))))

Daff xxxxxx

My grandmother had MS and I`ll always remember that she couldn`t speak when eating a meal and her walking was a bit slow

Hi Sue, I'm sorry to hear that Caroline has this distressing condition. I wish her well.

Years ago one of my parents' friends developed this at the age of 25. He went on to have two children and was fairly fit for decades. In the 1980's when he was in his late 40's he came to my wedding in a wheelchair, which was a great shock to us. At the time he had just moved to a 3-storey house, so that he had to get himself upstairs and down without assistance and sometimes he just had to drag himself, which upset us. But he did well and I am sorry to say that he died a couple of years ago - in his 80's.

So in my experience this is a condition to be lived with rather than one to be afraid of. All the best to those of you who are living with this. My father lived with Myaesthenic Syndrome and althpugh it affected his quality of life, it didn't affect his love for life.

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!!!!!!!!!!!!!!

A person's disability doesn't define their personality.

Sue x

Sue, you've just made me realise, I don't know my nephews symptoms.
I do know that about once a year he loses feeling in his legs - then he drives?(!) home to my brother, rests a week and is off again!!! (note to self - talk to nephew about driving with numb legs!!!)
Sister in law is a nurse so knows how things may get.
I usually only meet my nephew at family gatherings (about twice a year), when as a smoker, he and another nephew (my sister's son) come and join me when they smoke their 'baccy' (of the whacky kind) LOL
Nephew finds marijuhana relieves his symptoms - other nephew just smokes it cos he likes it!!

Maggie

I would be very pleased if I have enlightened just a few people to the suffering endured by anyone affected by MS.

Sue xx

Sue, have to admit nephew is very blase about the whole thing - finds it more of a bind than a handicap - but as you have said, it affects different people in different ways.
Nephew went to Uni, but found being a barman more to his liking so dropped out. Then diagnosed with MS at about 23.
Fortunately he found a firm who would fund him through Uni - and provide a 'speech' computer. After uni, he worked for them for the 2 years they required and then got a job in the MOD. which he loves.
He must be 35 now, still working, still using 'herbs' to ease the effect of MS.
Hopefully I'll see him in a fortnight, will ask him how things are going
(I usually get the response 'I could tell you but then I'd have to kill you') LOL

nudged up

Love

Daff xxxxx

And another nudge xxxxxxx

my cousin has just been diagnosed with MS, seeing her in two weeks so will find out how she is but I know she had to give up work due to very poor eyesight,( she has been told she may go blind )

Tallulahbelle