General Chat

Thank you to everyone who has read, added and nudged :-))

I think the purpose of this thread has now been served.

I hope some people have a little more understanding of MS now.

I would like to send my very best wishes to other sufferers and I sincerely hope they receive the support which they need and deserve.

Sue x

Edit: Please don't forget that there are different types of MS and some are more benign than the aggressive type that receives the most publicity.

FACT.........
What does research suggest?
Research suggests that:

* the overall life expectancy of people with MS is only slightly lower than that of the general population.
* since the 1960s, increase in life expectancy for people with MS has grown more rapidly than in the general population.
* improved health care for people with severe MS has been effective in reducing premature deaths.

I know only to well the havoc MS causes to young people.

My cousin was diagnosed with MS when she was pregnant with her second child. She was 26 years old. For 5/6 years there were no outward symptoms and then gradually she started to show signs of this terrible disease.

She had several severe episodes and would have to spend time in hospital and then it would go into remission but always leaving her much worse.

She eventually had to virtually live in her wheelchair completely dependent on others for everything.

She died last year at the age of 52.

Sue.... I live with the hope that a cure will be found in the near future.

My heart goes out to Caroline although I know that neither of you want sympathy ......just understanding.

Jean.

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

And another nudge xxxxxxx

nudged up

Love

Daff xxxxx

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

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, 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!!

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

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.

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

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

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

nudge with ((((hugs))))

Love

Daff xxxxxx

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.

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

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.

Nudge.

nudge with love xxxxxxx