Re:YES ANTHONY 21 years In the UK?

[Guest guest]

Hi there everyone,

I'm sure you know . My name is Jane Papadopoulos and I am mother to

who is now 21 years. has a brother Christos, 26 years who

is an Accountant. is profoundly deaf as well as having PMG. He

appears like a cerebral palsy person, left side worse than his right. But

classified as quadraplegic. His left arm is very tight in the elbow joint.

We have found the Peto methods best of all to help . He walked short

distances at age 6. He learned to feed himself at the Peto Institute in

Budapest at age 4 and half. He eats by himself using a spoon and finger

feeds. His food needs to be soft and juicy. He loves grated fruit and

yogurt. He rides a special wheeled Rifton bicycle. He can swim unaided and

loves the hydrotherapy pool. He is a happy chap like most of the kids who

has PMG. He can still walk short distances indoors, but his knees are much

more bent than they used to be, and he is much more on his left toe and his

left arm is a lot tighter. He has Botulinum injections every 6 months. In

fact very shortly we are going to New Jersey to a Dr Nuzzo to have an

operation called Selective Percutaneous Muscle/Tendon Lengthening. The way

they carry out the operation in the States under this Dr Nuzzo is much less

invasive than the way they do it in this country. I wouldn't entertain

lengthening in this country for . It would be too traumatic for him

and he hasn't got the understanding to cope with it. But the way Dr Nuzzo

is much better, there is no cutting, no stitches, no scar tissue and

patients recover much much quicker. There are many hurdles to overcome and

they never to end! has recently been diagnosed with severe

osteoporosis and has calcium and vitamin D supplement twice daily. He will

also receive intravenous injections of medication to help treat the

osteoporosis. There always seems to be something to worry about. Having

said that, they are truly lovely children and never seem to ask for

anything, apart from lots of love. Good luck to everyone. Jane and

xxx

In the UK?

>Incidentally, I just wondered if any other members live in the UK?

>

>Carole

>

>

>

>

>

[Guest guest]

Hi Jane,

It's nice to hear from you, and that you're in the UK too. Thank you

also for writing about , I'm new to all this since my grandson

is only 4 months old and was diagnosed last November. I'm

finding it such a help to hear of other people's experiences.

Best wishes, Carole

> Hi there everyone,

> I'm sure you know . My name is Jane Papadopoulos and I am

mother to

> who is now 21 years. has a brother Christos, 26

years who

> is an Accountant. is profoundly deaf as well as having

PMG. He

> appears like a cerebral palsy person, left side worse than his

right. But

> classified as quadraplegic. His left arm is very tight in the

elbow joint.

> We have found the Peto methods best of all to help . He

walked short

> distances at age 6. He learned to feed himself at the Peto

Institute in

> Budapest at age 4 and half. He eats by himself using a spoon and

finger

> feeds. His food needs to be soft and juicy. He loves grated fruit

and

> yogurt. He rides a special wheeled Rifton bicycle. He can swim

unaided and

> loves the hydrotherapy pool. He is a happy chap like most of the

kids who

> has PMG. He can still walk short distances indoors, but his knees

are much

> more bent than they used to be, and he is much more on his left toe

and his

> left arm is a lot tighter. He has Botulinum injections every 6

months. In

> fact very shortly we are going to New Jersey to a Dr Nuzzo to have

an

> operation called Selective Percutaneous Muscle/Tendon Lengthening.

The way

> they carry out the operation in the States under this Dr Nuzzo is

much less

> invasive than the way they do it in this country. I wouldn't

entertain

> lengthening in this country for . It would be too traumatic

for him

> and he hasn't got the understanding to cope with it. But the way

Dr Nuzzo

> is much better, there is no cutting, no stitches, no scar tissue and

> patients recover much much quicker. There are many hurdles to

overcome and

> they never to end! has recently been diagnosed with severe

> osteoporosis and has calcium and vitamin D supplement twice daily.

He will

> also receive intravenous injections of medication to help treat the

> osteoporosis. There always seems to be something to worry about.

Having

> said that, they are truly lovely children and never seem to ask for

> anything, apart from lots of love. Good luck to everyone. Jane

and

> xxx

> In the UK?

>

>

> >Incidentally, I just wondered if any other members live in the UK?

> >

> >Carole

> >

> >

> >

> >

> >