Re: PLS vs ALS ???

June 11, 2006

Hi, ,

Your neurologist is not thinking clearly. PLS cannot and does not

degenerate to ALS. However, there are time when ALS is misdiagnosed

as PLS.

While the symptoms of both appear the same, there are critical

differences. The first is duration. While there are well known

cases of ALS lasting 10, 20, 30 years or more ( Hawkins for

one), 80% of ALS victims fall to the disease within 5 years of onset.

PLS victims have an estimated life span of better than 20 years, and

in some cases much longer.

The other difference is which motor neurons are involved. In PLS.

the disease affects the upper motor neurons, with only minimal

involvement of the lower motor neurons. In ALS. both are deeply

involved, which explains the loss of body (muscle) mass in ALS. The

EMG test can help determine which motor neurons are involved.

I fear that your neurologist has have very little exposure to PLS and

suggest that he should better informed before talking with patients.

Don

June 11, 2006

hi all,

steven hawkings does not have ALS, he has some form of spinal ataxia

jim hauck

Posted by: " Don " don-wilson@... scouter427

Sun Jun 11, 2006 3:55 pm (PST)

Hi, ,

Your neurologist is not thinking clearly. PLS cannot and does not

degenerate to ALS. However, there are time when ALS is misdiagnosed

as PLS.

While the symptoms of both appear the same, there are critical

differences. The first is duration. While there are well known

cases of ALS lasting 10, 20, 30 years or more ( Hawkins for

one), 80% of ALS victims fall to the disease within 5 years of onset.

June 12, 2006

Jim,

It would be so nice If you share your docs about hawkings regarding he has some

form of spinal ataxia

Best

Alper Kaya MD

Ophthalmologist

Jim Hauck jimhauck@...> yazdÄ±: hi all,

steven hawkings does not have ALS, he has some form of spinal ataxia

jim hauck

Posted by: " Don " don-wilson@... scouter427

Sun Jun 11, 2006 3:55 pm (PST)

Hi, ,

Your neurologist is not thinking clearly. PLS cannot and does not

degenerate to ALS. However, there are time when ALS is misdiagnosed

as PLS.

While the symptoms of both appear the same, there are critical

differences. The first is duration. While there are well known

cases of ALS lasting 10, 20, 30 years or more ( Hawkins for

one), 80% of ALS victims fall to the disease within 5 years of onset.

June 12, 2006

Hello

Jim where did you get the info that Hawkings has Spinal

Ataxia i would be very interested in finding out . GEO

>

> hi all,

>

> steven hawkings does not have ALS, he has some form of spinal

ataxia

>

> jim hauck

>

> Posted by: " Don " don-wilson@... scouter427

> Sun Jun 11, 2006 3:55 pm (PST)

> Hi, ,

>

> Your neurologist is not thinking clearly. PLS cannot and does not

> degenerate to ALS. However, there are time when ALS is

misdiagnosed

> as PLS.

>

> While the symptoms of both appear the same, there are critical

> differences. The first is duration. While there are well known

> cases of ALS lasting 10, 20, 30 years or more ( Hawkins for

> one), 80% of ALS victims fall to the disease within 5 years of

onset.

>

June 12, 2006

from stephen hawkins website:

I am quite often asked: How do you feel about having ALS? The answer

is, not a lot. I try to lead as normal a life as possible, and not

think about my condition, or regret the things it prevents me from

doing, which are not that many.

It was a great shock to me to discover that I had motor neurone

disease. I had never been very well co-ordinated physically as a

child. I was not good at ball games, and my handwriting was the

despair of my teachers. Maybe for this reason, I didn't care much

for sport or physical activities. But things seemed to change when I

went to Oxford, at the age of 17. I took up coxing and rowing. I was

not Boat Race standard, but I got by at the level of inter-College

competition.

In my third year at Oxford, however, I noticed that I seemed to be

getting more clumsy, and I fell over once or twice for no apparent

reason. But it was not until I was at Cambridge, in the following

year, that my father noticed, and took me to the family doctor. He

referred me to a specialist, and shortly after my 21st birthday, I

went into hospital for tests. I was in for two weeks, during which I

had a wide variety of tests. They took a muscle sample from my arm,

stuck electrodes into me, and injected some radio opaque fluid into

my spine, and watched it going up and down with x-rays, as they

tilted the bed. After all that, they didn't tell me what I had,

except that it was not multiple sclerosis, and that I was an a-

typical case. I gathered, however, that they expected it to continue

to get worse, and that there was nothing they could do, except give

me vitamins. I could see that they didn't expect them to have much

effect. I didn't feel like asking for more details, because they

were obviously bad.

The realisation that I had an incurable disease, that was likely to

kill me in a few years, was a bit of a shock. How could something

like that happen to me? Why should I be cut off like this? However,

while I had been in hospital, I had seen a boy I vaguely knew die of

leukaemia, in the bed opposite me. It had not been a pretty sight.

Clearly there were people who were worse off than me. At least my

condition didn't make me feel sick. Whenever I feel inclined to be

sorry for myself I remember that boy.

Not knowing what was going to happen to me, or how rapidly the

disease would progress, I was at a loose end. The doctors told me to

go back to Cambridge and carry on with the research I had just

started in general relativity and cosmology. But I was not making

much progress, because I didn't have much mathematical background.

And, anyway, I might not live long enough to finish my PhD. I felt

somewhat of a tragic character. I took to listening to Wagner, but

reports in magazine articles that I drank heavily are an

exaggeration. The trouble is once one article said it, other

articles copied it, because it made a good story. People believe

that anything that has appeared in print so many times must be true.

My dreams at that time were rather disturbed. Before my condition

had been diagnosed, I had been very bored with life. There had not

seemed to be anything worth doing. But shortly after I came out of

hospital, I dreamt that I was going to be executed. I suddenly

realised that there were a lot of worthwhile things I could do if I

were reprieved. Another dream, that I had several times, was that I

would sacrifice my life to save others. After all, if I were going

to die anyway, it might as well do some good. But I didn't die. In

fact, although there was a cloud hanging over my future, I found, to

my surprise, that I was enjoying life in the present more than

before. I began to make progress with my research, and I got engaged

to a girl called Jane Wilde, whom I had met just about the time my

condition was diagnosed. That engagement changed my life. It gave me

something to live for. But it also meant that I had to get a job if

we were to get married. I therefore applied for a research

fellowship at Gonville and Caius (pronounced Keys) college,

Cambridge. To my great surprise, I got a fellowship, and we got

married a few months later.

The fellowship at Caius took care of my immediate employment

problem. I was lucky to have chosen to work in theoretical physics,

because that was one of the few areas in which my condition would

not be a serious handicap. And I was fortunate that my scientific

reputation increased, at the same time that my disability got worse.

This meant that people were prepared to offer me a sequence of

positions in which I only had to do research, without having to

lecture.

We were also fortunate in housing. When we were married, Jane was

still an undergraduate at Westfield College in London, so she had to

go up to London during the week. This meant that we had to find

somewhere I could manage on my own, and which was central, because I

could not walk far. I asked the College if they could help, but was

told by the then Bursar: it is College policy not to help Fellows

with housing. We therefore put our name down to rent one of a group

of new flats that were being built in the market place. (Years

later, I discovered that those flats were actually owned by the

College, but they didn't tell me that.) However, when we returned to

Cambridge from a visit to America after the marriage, we found that

the flats were not ready. As a great concession, the Bursar said we

could have a room in a hostel for graduate students. He said, " We

normally charge 12 shillings and 6 pence a night for this room.

However, as there will be two of you in the room, we will charge 25

shillings. " We stayed there only three nights. Then we found a small

house about 100 yards from my university department. It belonged to

another College, who had let it to one of its fellows. However he

had moved out to a house he had bought in the suburbs. He sub-let

the house to us for the remaining three months of his lease. During

those three months, we found that another house in the same road was

standing empty. A neighbour summoned the owner from Dorset, and told

her that it was a scandal that her house should be empty, when young

people were looking for accommodation. So she let the house to us.

After we had lived there for a few years, we wanted to buy the

house, and do it up. So we asked my College for a mortgage. However,

the College did a survey, and decided it was not a good risk. In the

end we got a mortgage from a building society, and my parents gave

us the money to do it up. We lived there for another four years, but

it became too difficult for me to manage the stairs. By this time,

the College appreciated me rather more, and there was a different

Bursar. They therefore offered us a ground floor flat in a house

that they owned. This suited me very well, because it had large

rooms and wide doors. It was sufficiently central that I could get

to my University department, or the College, in my electric wheel

chair. It was also nice for our three children, because it was

surrounded by garden, which was looked after by the College

gardeners.

Up to 1974, I was able to feed myself, and get in and out of bed.

Jane managed to help me, and bring up the children, without outside

help. However, things were getting more difficult, so we took to

having one of my research students living with us. In return for

free accommodation, and a lot of my attention, they helped me get up

and go to bed. In 1980, we changed to a system of community and

private nurses, who came in for an hour or two in the morning and

evening. This lasted until I caught pneumonia in 1985. I had to have

a tracheotomy operation. After this, I had to have 24 hour nursing

care. This was made possible by grants from several foundations.

Before the operation, my speech had been getting more slurred, so

that only a few people who knew me well, could understand me. But at

least I could communicate. I wrote scientific papers by dictating to

a secretary, and I gave seminars through an interpreter, who

repeated my words more clearly. However, the tracheotomy operation

removed my ability to speak altogether. For a time, the only way I

could communicate was to spell out words letter by letter, by

raising my eyebrows when someone pointed to the right letter on a

spelling card. It is pretty difficult to carry on a conversation

like that, let alone write a scientific paper. However, a computer

expert in California, called Walt Woltosz, heard of my plight. He

sent me a computer program he had written, called Equalizer. This

allowed me to select words from a series of menus on the screen, by

pressing a switch in my hand. The program could also be controlled

by a switch, operated by head or eye movement. When I have built up

what I want to say, I can send it to a speech synthesizer. At first,

I just ran the Equalizer program on a desk top computer.

However Mason, of Cambridge Adaptive Communication, fitted a

small portable computer and a speech synthesizer to my wheel chair.

This system allowed me to communicate much better than I could

before. I can manage up to 15 words a minute. I can either speak

what I have written, or save it to disk. I can then print it out, or

call it back and speak it sentence by sentence. Using this system, I

have written a book, and dozens of scientific papers. I have also

given many scientific and popular talks. They have all been well

received. I think that is in a large part due to the quality of the

speech synthesiser, which is made by Speech Plus. One's voice is

very important. If you have a slurred voice, people are likely to

treat you as mentally deficient: Does he take sugar? This

synthesiser is by far the best I have heard, because it varies the

intonation, and doesn't speak like a Dalek. The only trouble is that

it gives me an American accent.

I have had motor neurone disease for practically all my adult life.

Yet it has not prevented me from having a very attractive family,

and being successful in my work. This is thanks to the help I have

received from Jane, my children, and a large number of other people

and organisations. I have been lucky, that my condition has

progressed more slowly than is often the case. But it shows that one

need not lose hope.

Hawking

For more information on Motor Neurone Disease and Amyotrophic

Lateral Sclerosis, as well as other progressive conditions, please

follow one of the links below:

The Motor Neurone Disease Association (UK)

International Alliance of ALS/MND Associations on the internet

June 13, 2006

Hi ,

I agree with Don. I told my neuro that several on the PLS site have now

been diagnosed with ALS. He said they never had PLS to begin with, they

had ALS.

Arlene

June 13, 2006

I was diagnosed in May, 2002 with probable PLS but with some slight

abnormalities in my EMG. After two more EMG's and more prominent symptoms and

nerve loss my diagnosis was changed in July, 2004 to ALS. This has been

confirmed by two neurologists who specialize in ALS, but mine is relatively slow