Re: Speech isolation and other problems

[Guest guest]

,

You are speaking from point of view of a person working.

What Eva & Maureen say apply to me 100% as I retired in 95 & sit at home.

I am " Alone, alone all all alone on a wide wide sea " ! :-)

I don't see any other person, other than my family members. All my

" friends " are gone! They are not to be blamed, the reason is that I don't

(Can't) communicate with them. Phone calls-not possible, if they meet me at

my home on visit I am able to communicate so little they must be thinking

twice before their next visit. They must be thinking " What's the purpose,

anyway he can't converse " & add to it the " Idiotic " expressionless face

endowed by PLS!

Thus slowly over past 10 years I have lost touch with ALL my " Friends " I am

left with only my family & you know the rest.

In the case of people with other diseases like diabetes, heart problem etc

which does not affect mobility or speech I don't think this sort of

isolation is a problem.

Jagan

Speech isolation and other problems

> You're both darn tootin'!! I find the lack of speech to be my biggest

> problem, not so much from the isolation point of view because I think I

> manage that aspect fairly well through the use of SMS messages and email

> to communicate with family and friends and use email and instant

> messaging to communicate with work colleagues near me and worldwide at

> work.

>

> The problem is that it exacerbates many of our other limitations and

> difficulties. If for example I start to fall over, I can't call out to

> someone walking next to me to try to catch me or at least prevent me

> from hitting the deck so hard if they don't happen to be concentrating

> solely on me to see me start to go. I don't want them to think they

> daren't take their eyes off me for one second. If I have fallen and

> nobody is close handy I can't call out to them for help, plus a million

> other things...............

>

> .

>

> Maureen wrote:

>

>> Speech or lack of understandability causes social isolation worse than

>> any other symptom we have.

>>

>> You are so right eva!!

>>

>> Maureen

>>

>>

>> >

>> >............................................. We're hopeful that

>> once

>> > I get enough baclofen to ease the muscles that speech will come

>> back.

>> > Speech or lack of understandability causes social isolation worse

>> than

>> > any other symptom we have - and that includes bladder spasms. ha

>

>

>

>

>

>

[Guest guest]

,

You are speaking from point of view of a person working.

What Eva & Maureen say apply to me 100% as I retired in 95 & sit at home.

I am " Alone, alone all all alone on a wide wide sea " ! :-)

I don't see any other person, other than my family members. All my

" friends " are gone! They are not to be blamed, the reason is that I don't

(Can't) communicate with them. Phone calls-not possible, if they meet me at

my home on visit I am able to communicate so little they must be thinking

twice before their next visit. They must be thinking " What's the purpose,

anyway he can't converse " & add to it the " Idiotic " expressionless face

endowed by PLS!

Thus slowly over past 10 years I have lost touch with ALL my " Friends " I am

left with only my family & you know the rest.

In the case of people with other diseases like diabetes, heart problem etc

which does not affect mobility or speech I don't think this sort of

isolation is a problem.

Jagan

Speech isolation and other problems

> You're both darn tootin'!! I find the lack of speech to be my biggest

> problem, not so much from the isolation point of view because I think I

> manage that aspect fairly well through the use of SMS messages and email

> to communicate with family and friends and use email and instant

> messaging to communicate with work colleagues near me and worldwide at

> work.

>

> The problem is that it exacerbates many of our other limitations and

> difficulties. If for example I start to fall over, I can't call out to

> someone walking next to me to try to catch me or at least prevent me

> from hitting the deck so hard if they don't happen to be concentrating

> solely on me to see me start to go. I don't want them to think they

> daren't take their eyes off me for one second. If I have fallen and

> nobody is close handy I can't call out to them for help, plus a million

> other things...............

>

> .

>

> Maureen wrote:

>

>> Speech or lack of understandability causes social isolation worse than

>> any other symptom we have.

>>

>> You are so right eva!!

>>

>> Maureen

>>

>>

>> >

>> >............................................. We're hopeful that

>> once

>> > I get enough baclofen to ease the muscles that speech will come

>> back.

>> > Speech or lack of understandability causes social isolation worse

>> than

>> > any other symptom we have - and that includes bladder spasms. ha

>

>

>

>

>

>

[Guest guest]

,

You are speaking from point of view of a person working.

What Eva & Maureen say apply to me 100% as I retired in 95 & sit at home.

I am " Alone, alone all all alone on a wide wide sea " ! :-)

I don't see any other person, other than my family members. All my

" friends " are gone! They are not to be blamed, the reason is that I don't

(Can't) communicate with them. Phone calls-not possible, if they meet me at

my home on visit I am able to communicate so little they must be thinking

twice before their next visit. They must be thinking " What's the purpose,

anyway he can't converse " & add to it the " Idiotic " expressionless face

endowed by PLS!

Thus slowly over past 10 years I have lost touch with ALL my " Friends " I am

left with only my family & you know the rest.

In the case of people with other diseases like diabetes, heart problem etc

which does not affect mobility or speech I don't think this sort of

isolation is a problem.

Jagan

Speech isolation and other problems

> You're both darn tootin'!! I find the lack of speech to be my biggest

> problem, not so much from the isolation point of view because I think I

> manage that aspect fairly well through the use of SMS messages and email

> to communicate with family and friends and use email and instant

> messaging to communicate with work colleagues near me and worldwide at

> work.

>

> The problem is that it exacerbates many of our other limitations and

> difficulties. If for example I start to fall over, I can't call out to

> someone walking next to me to try to catch me or at least prevent me

> from hitting the deck so hard if they don't happen to be concentrating

> solely on me to see me start to go. I don't want them to think they

> daren't take their eyes off me for one second. If I have fallen and

> nobody is close handy I can't call out to them for help, plus a million

> other things...............

>

> .

>

> Maureen wrote:

>

>> Speech or lack of understandability causes social isolation worse than

>> any other symptom we have.

>>

>> You are so right eva!!

>>

>> Maureen

>>

>>

>> >

>> >............................................. We're hopeful that

>> once

>> > I get enough baclofen to ease the muscles that speech will come

>> back.

>> > Speech or lack of understandability causes social isolation worse

>> than

>> > any other symptom we have - and that includes bladder spasms. ha

>

>

>

>

>

>

[Guest guest]

Jagan,

Sorry, I think you misinterpret me. What I was saying is that lack of

speech is by far the most disabling and frustrating aspect of my PLS,

which given I can't even take a step without my walker and if I end up

on the floor I can't get up because I haven't the strength in my arms or

legs, is a big call.

I am fortunate that I have a small number of long term friends who are

still around and who still occasionally call in or I go to their place.

One is my best friend from childhood, a friendship going on for close to

50 years now as I first became friends with him when I was 3 years old.

Another is a friend from high school and uni and I think it does him

good to have me for a friend as since his marriage break up many years

ago he has suffered from fits of depression and I think that amongst

other things I provide him with the stark reality that things could

always be worse for him. If that is the case I have no problems with

our 35+ year friendship also providing that role for him now. There are

a group of five other guys I used to teach with (I left teaching in

1988, five years before PLS hit) who get together 3 or 4 times per year

for a meal at different decent restaurants and a couple of them I

occasionally see at other times. None of those friends has anything to

do with my current work environment.

These friends are all very patient as I laboriously type out stuff on my

Lightwriter for them to read. I learnt many years ago that people find

it far easier to read the screen on the Lightwriter rather than try to

work out what it is saying. I set volume to zero and replay speed to

medium (a bit slow for some people but anything more is just a blur) and

when I have finished typing in all I want to say it plays back at a

speed I have never found anybody to have problems with. I do that

everywhere I go and never had a problem. Apart from that as I said I

just use email and SMS extensively to work around as best I can all the

limitations of having no speech.

As far as work goes, the people there are absolutely fantastic in the

way they help me, but apart from very occasional group dinners (maybe

once every two years) I have absolutely NO contact with them outside

work! They all had their own circles of friends established when I

joined the group as an already moderately disabled person over 10 years

ago and I guess weren't ready for a disabled person to slow them down.

We are an extremely cohesive and co-operative group while working, but

outside of work everyone goes their separate ways apart from two guys

who very occasionally play a round of golf together.

Due to the fact that it takes me so long to get up and dressed and have

breakfast in the mornings and I am usually on the computer writing

emails such as these till at least 2am most nights, I work very odd

hours. These days I normally get to work about 11.30am and leave at 8pm

or 9pm (sometimes later), whereas everyone else is usually gone by 6pm

at the latest. In the meantime there is usually plenty to keep me busy

and 99% of communication is work related. Fortunately I work in

computer support (programming) and there are advantages to the company

to have a wide spread of coverage, so the company I work for has no

problems with my hours. One of the other guys starts about 7.30am and

works through till 4pm so we provide onsite support from 7.30am till

usually about 9pm, far better than what our customers would get if we

all worked a standard day. There is 24 hour security and the guards

usually come through every hour or so, so I am not really on my own and

if I did have a problem I just SMS my wife or one of my daughters who

would then ring the guardhouse and let them know I needed help - have

never needed to do that.

What I was getting at in my original email is that I feel we are

extremely fortunate to at least be in an age where we have electronic

resources such as email, SMS and instant messaging for communication.

The reference to work was only reinforcing the fact that while at work I

can also use those things for communication as well as using them at

home and therefore I still feel I can function efficiently at work due

to those resources despite having no speech in an industry which relies

on good communication with customers (clients).

I was never at any stage implying anything about colleagues at work

providing a basis for my friendships, which is how you seem to have

interpreted it. As I have explained, I never see any of my work

colleagues outside work and the friends I do see are friends from many

years ago before I became disabled. I probably see each one at most

once every two months, so try not to wear out their patience with me.

In summary, what I was saying is that lack of speech is by far the worst

of my problems and exacerbates the other disabilities, magnifying the

impact they can have but at least we live in an age where it is possible

to overcome our communication problems and isolation using such things

as email and SMS etc..

In fact, SMS is an absolute life saver for me! Fortunately Australia

has one of the highest, or maybe the highest rate of mobile (or cell as

Americans call them) phone ownerships per capita in the world.

Virtually everybody I know has one eg. myself, my wife, both daughters,

their boyfriends, even my elderly parents and my wife's elderly parents

and all the friends I mentioned (except one who I can typically get a

reply on email from during the day in 5 minutes). If I need anything or

anyone I can usually instantly get a reply from the aforementioned

people despite my lack of speech. I would not be game to drive anywhere

in my car without the ability to SMS people from my mobile phone in case

of a mechanical failure, flat tyre or god forbid, an accident, yet I

feel at ease driving anywhere now.

I don't know what the infrastructure for mobile phones is like over

there where you live or how many people have them, but it could be that

using SMS as a way of keeping in touch with people could enable things

to improve for you.

Jagan wrote:

> ,

> You are speaking from point of view of a person working.

> What Eva & Maureen say apply to me 100% as I retired in 95 & sit at

> home.

> I am " Alone, alone all all alone on a wide wide sea " ! :-)

> I don't see any other person, other than my family members. All my

> " friends " are gone! They are not to be blamed, the reason is that I don't

> (Can't) communicate with them. Phone calls-not possible, if they meet

> me at

> my home on visit I am able to communicate so little they must be thinking

> twice before their next visit. They must be thinking " What's the purpose,

> anyway he can't converse " & add to it the " Idiotic " expressionless face

> endowed by PLS!

>

> Thus slowly over past 10 years I have lost touch with ALL my " Friends "

> I am

> left with only my family & you know the rest.

>

> In the case of people with other diseases like diabetes, heart problem

> etc

> which does not affect mobility or speech I don't think this sort of

> isolation is a problem.

>

> Jagan

> Speech isolation and other problems

>

>

> > You're both darn tootin'!! I find the lack of speech to be my biggest

> > problem, not so much from the isolation point of view because I think I

> > manage that aspect fairly well through the use of SMS messages and email

> > to communicate with family and friends and use email and instant

> > messaging to communicate with work colleagues near me and worldwide at

> > work.

> >

> > The problem is that it exacerbates many of our other limitations and

> > difficulties. If for example I start to fall over, I can't call out to

> > someone walking next to me to try to catch me or at least prevent me

> > from hitting the deck so hard if they don't happen to be concentrating

> > solely on me to see me start to go. I don't want them to think they

> > daren't take their eyes off me for one second. If I have fallen and

> > nobody is close handy I can't call out to them for help, plus a million

> > other things...............

> >

> >

[Guest guest]

Jagan,

Sorry, I think you misinterpret me. What I was saying is that lack of

speech is by far the most disabling and frustrating aspect of my PLS,

which given I can't even take a step without my walker and if I end up

on the floor I can't get up because I haven't the strength in my arms or

legs, is a big call.

I am fortunate that I have a small number of long term friends who are

still around and who still occasionally call in or I go to their place.

One is my best friend from childhood, a friendship going on for close to

50 years now as I first became friends with him when I was 3 years old.

Another is a friend from high school and uni and I think it does him

good to have me for a friend as since his marriage break up many years

ago he has suffered from fits of depression and I think that amongst

other things I provide him with the stark reality that things could

always be worse for him. If that is the case I have no problems with

our 35+ year friendship also providing that role for him now. There are

a group of five other guys I used to teach with (I left teaching in

1988, five years before PLS hit) who get together 3 or 4 times per year

for a meal at different decent restaurants and a couple of them I

occasionally see at other times. None of those friends has anything to

do with my current work environment.

These friends are all very patient as I laboriously type out stuff on my

Lightwriter for them to read. I learnt many years ago that people find

it far easier to read the screen on the Lightwriter rather than try to

work out what it is saying. I set volume to zero and replay speed to

medium (a bit slow for some people but anything more is just a blur) and

when I have finished typing in all I want to say it plays back at a

speed I have never found anybody to have problems with. I do that

everywhere I go and never had a problem. Apart from that as I said I

just use email and SMS extensively to work around as best I can all the

limitations of having no speech.

As far as work goes, the people there are absolutely fantastic in the

way they help me, but apart from very occasional group dinners (maybe

once every two years) I have absolutely NO contact with them outside

work! They all had their own circles of friends established when I

joined the group as an already moderately disabled person over 10 years

ago and I guess weren't ready for a disabled person to slow them down.

We are an extremely cohesive and co-operative group while working, but

outside of work everyone goes their separate ways apart from two guys

who very occasionally play a round of golf together.

Due to the fact that it takes me so long to get up and dressed and have

breakfast in the mornings and I am usually on the computer writing

emails such as these till at least 2am most nights, I work very odd

hours. These days I normally get to work about 11.30am and leave at 8pm

or 9pm (sometimes later), whereas everyone else is usually gone by 6pm

at the latest. In the meantime there is usually plenty to keep me busy

and 99% of communication is work related. Fortunately I work in

computer support (programming) and there are advantages to the company

to have a wide spread of coverage, so the company I work for has no

problems with my hours. One of the other guys starts about 7.30am and

works through till 4pm so we provide onsite support from 7.30am till

usually about 9pm, far better than what our customers would get if we

all worked a standard day. There is 24 hour security and the guards

usually come through every hour or so, so I am not really on my own and

if I did have a problem I just SMS my wife or one of my daughters who

would then ring the guardhouse and let them know I needed help - have

never needed to do that.

What I was getting at in my original email is that I feel we are

extremely fortunate to at least be in an age where we have electronic

resources such as email, SMS and instant messaging for communication.

The reference to work was only reinforcing the fact that while at work I

can also use those things for communication as well as using them at

home and therefore I still feel I can function efficiently at work due

to those resources despite having no speech in an industry which relies

on good communication with customers (clients).

I was never at any stage implying anything about colleagues at work

providing a basis for my friendships, which is how you seem to have

interpreted it. As I have explained, I never see any of my work

colleagues outside work and the friends I do see are friends from many

years ago before I became disabled. I probably see each one at most

once every two months, so try not to wear out their patience with me.

In summary, what I was saying is that lack of speech is by far the worst

of my problems and exacerbates the other disabilities, magnifying the

impact they can have but at least we live in an age where it is possible

to overcome our communication problems and isolation using such things

as email and SMS etc..

In fact, SMS is an absolute life saver for me! Fortunately Australia

has one of the highest, or maybe the highest rate of mobile (or cell as

Americans call them) phone ownerships per capita in the world.

Virtually everybody I know has one eg. myself, my wife, both daughters,

their boyfriends, even my elderly parents and my wife's elderly parents

and all the friends I mentioned (except one who I can typically get a

reply on email from during the day in 5 minutes). If I need anything or

anyone I can usually instantly get a reply from the aforementioned

people despite my lack of speech. I would not be game to drive anywhere

in my car without the ability to SMS people from my mobile phone in case

of a mechanical failure, flat tyre or god forbid, an accident, yet I

feel at ease driving anywhere now.

I don't know what the infrastructure for mobile phones is like over

there where you live or how many people have them, but it could be that

using SMS as a way of keeping in touch with people could enable things

to improve for you.

Jagan wrote:

> ,

> You are speaking from point of view of a person working.

> What Eva & Maureen say apply to me 100% as I retired in 95 & sit at

> home.

> I am " Alone, alone all all alone on a wide wide sea " ! :-)

> I don't see any other person, other than my family members. All my

> " friends " are gone! They are not to be blamed, the reason is that I don't

> (Can't) communicate with them. Phone calls-not possible, if they meet

> me at

> my home on visit I am able to communicate so little they must be thinking

> twice before their next visit. They must be thinking " What's the purpose,

> anyway he can't converse " & add to it the " Idiotic " expressionless face

> endowed by PLS!

>

> Thus slowly over past 10 years I have lost touch with ALL my " Friends "

> I am

> left with only my family & you know the rest.

>

> In the case of people with other diseases like diabetes, heart problem

> etc

> which does not affect mobility or speech I don't think this sort of

> isolation is a problem.

>

> Jagan

> Speech isolation and other problems

>

>

> > You're both darn tootin'!! I find the lack of speech to be my biggest

> > problem, not so much from the isolation point of view because I think I

> > manage that aspect fairly well through the use of SMS messages and email

> > to communicate with family and friends and use email and instant

> > messaging to communicate with work colleagues near me and worldwide at

> > work.

> >

> > The problem is that it exacerbates many of our other limitations and

> > difficulties. If for example I start to fall over, I can't call out to

> > someone walking next to me to try to catch me or at least prevent me

> > from hitting the deck so hard if they don't happen to be concentrating

> > solely on me to see me start to go. I don't want them to think they

> > daren't take their eyes off me for one second. If I have fallen and

> > nobody is close handy I can't call out to them for help, plus a million

> > other things...............

> >

> >

[Guest guest]

Jagan,

Sorry, I think you misinterpret me. What I was saying is that lack of

speech is by far the most disabling and frustrating aspect of my PLS,

which given I can't even take a step without my walker and if I end up

on the floor I can't get up because I haven't the strength in my arms or

legs, is a big call.

I am fortunate that I have a small number of long term friends who are

still around and who still occasionally call in or I go to their place.

One is my best friend from childhood, a friendship going on for close to

50 years now as I first became friends with him when I was 3 years old.

Another is a friend from high school and uni and I think it does him

good to have me for a friend as since his marriage break up many years

ago he has suffered from fits of depression and I think that amongst

other things I provide him with the stark reality that things could

always be worse for him. If that is the case I have no problems with

our 35+ year friendship also providing that role for him now. There are

a group of five other guys I used to teach with (I left teaching in

1988, five years before PLS hit) who get together 3 or 4 times per year

for a meal at different decent restaurants and a couple of them I

occasionally see at other times. None of those friends has anything to

do with my current work environment.

These friends are all very patient as I laboriously type out stuff on my

Lightwriter for them to read. I learnt many years ago that people find

it far easier to read the screen on the Lightwriter rather than try to

work out what it is saying. I set volume to zero and replay speed to

medium (a bit slow for some people but anything more is just a blur) and

when I have finished typing in all I want to say it plays back at a

speed I have never found anybody to have problems with. I do that

everywhere I go and never had a problem. Apart from that as I said I

just use email and SMS extensively to work around as best I can all the

limitations of having no speech.

As far as work goes, the people there are absolutely fantastic in the

way they help me, but apart from very occasional group dinners (maybe

once every two years) I have absolutely NO contact with them outside

work! They all had their own circles of friends established when I

joined the group as an already moderately disabled person over 10 years

ago and I guess weren't ready for a disabled person to slow them down.

We are an extremely cohesive and co-operative group while working, but

outside of work everyone goes their separate ways apart from two guys

who very occasionally play a round of golf together.

Due to the fact that it takes me so long to get up and dressed and have

breakfast in the mornings and I am usually on the computer writing

emails such as these till at least 2am most nights, I work very odd

hours. These days I normally get to work about 11.30am and leave at 8pm

or 9pm (sometimes later), whereas everyone else is usually gone by 6pm

at the latest. In the meantime there is usually plenty to keep me busy

and 99% of communication is work related. Fortunately I work in

computer support (programming) and there are advantages to the company

to have a wide spread of coverage, so the company I work for has no

problems with my hours. One of the other guys starts about 7.30am and

works through till 4pm so we provide onsite support from 7.30am till

usually about 9pm, far better than what our customers would get if we

all worked a standard day. There is 24 hour security and the guards

usually come through every hour or so, so I am not really on my own and

if I did have a problem I just SMS my wife or one of my daughters who

would then ring the guardhouse and let them know I needed help - have

never needed to do that.

What I was getting at in my original email is that I feel we are

extremely fortunate to at least be in an age where we have electronic

resources such as email, SMS and instant messaging for communication.

The reference to work was only reinforcing the fact that while at work I

can also use those things for communication as well as using them at

home and therefore I still feel I can function efficiently at work due

to those resources despite having no speech in an industry which relies

on good communication with customers (clients).

I was never at any stage implying anything about colleagues at work

providing a basis for my friendships, which is how you seem to have

interpreted it. As I have explained, I never see any of my work

colleagues outside work and the friends I do see are friends from many

years ago before I became disabled. I probably see each one at most

once every two months, so try not to wear out their patience with me.

In summary, what I was saying is that lack of speech is by far the worst

of my problems and exacerbates the other disabilities, magnifying the

impact they can have but at least we live in an age where it is possible

to overcome our communication problems and isolation using such things

as email and SMS etc..

In fact, SMS is an absolute life saver for me! Fortunately Australia

has one of the highest, or maybe the highest rate of mobile (or cell as

Americans call them) phone ownerships per capita in the world.

Virtually everybody I know has one eg. myself, my wife, both daughters,

their boyfriends, even my elderly parents and my wife's elderly parents

and all the friends I mentioned (except one who I can typically get a

reply on email from during the day in 5 minutes). If I need anything or

anyone I can usually instantly get a reply from the aforementioned

people despite my lack of speech. I would not be game to drive anywhere

in my car without the ability to SMS people from my mobile phone in case

of a mechanical failure, flat tyre or god forbid, an accident, yet I

feel at ease driving anywhere now.

I don't know what the infrastructure for mobile phones is like over

there where you live or how many people have them, but it could be that

using SMS as a way of keeping in touch with people could enable things

to improve for you.

Jagan wrote:

> ,

> You are speaking from point of view of a person working.

> What Eva & Maureen say apply to me 100% as I retired in 95 & sit at

> home.

> I am " Alone, alone all all alone on a wide wide sea " ! :-)

> I don't see any other person, other than my family members. All my

> " friends " are gone! They are not to be blamed, the reason is that I don't

> (Can't) communicate with them. Phone calls-not possible, if they meet

> me at

> my home on visit I am able to communicate so little they must be thinking

> twice before their next visit. They must be thinking " What's the purpose,

> anyway he can't converse " & add to it the " Idiotic " expressionless face

> endowed by PLS!

>

> Thus slowly over past 10 years I have lost touch with ALL my " Friends "

> I am

> left with only my family & you know the rest.

>

> In the case of people with other diseases like diabetes, heart problem

> etc

> which does not affect mobility or speech I don't think this sort of

> isolation is a problem.

>

> Jagan

> Speech isolation and other problems

>

>

> > You're both darn tootin'!! I find the lack of speech to be my biggest

> > problem, not so much from the isolation point of view because I think I

> > manage that aspect fairly well through the use of SMS messages and email

> > to communicate with family and friends and use email and instant

> > messaging to communicate with work colleagues near me and worldwide at

> > work.

> >

> > The problem is that it exacerbates many of our other limitations and

> > difficulties. If for example I start to fall over, I can't call out to

> > someone walking next to me to try to catch me or at least prevent me

> > from hitting the deck so hard if they don't happen to be concentrating

> > solely on me to see me start to go. I don't want them to think they

> > daren't take their eyes off me for one second. If I have fallen and

> > nobody is close handy I can't call out to them for help, plus a million

> > other things...............

> >

> >

[Guest guest]

Everyone, Eva, Maureen, C, Dolores, Geo, gary duke is right.

As Dolores put it the isolation depends on each individual's circumstances.

In my case after finishing my education I moved away a 1000 miles from the

place I am born & brought up--on work

IN the 60s, & 70s communication was limited to Postal (Mail) & Morse code

telegrams. This effectively cut off contact my boyhood friends & each of

them moved their own way - far away --I don't know where.

Till I worked I could share thoughts with a few of my co-workers. Now they

are not there - retired or having their own problems or gone.

I agree with C in that one of the most scary part due to my inability

to react in form of understandable speech is falls, fear of falls. Two days

back my 3 year old grandson playfully gently pushed me when I was walking in

my bed room with my walker, -- I couldn't tell anything to him .....could

only shout ............NO..... after a few crucial seconds & somehow avoided

a fall.

Jagan

[Guest guest]

Everyone, Eva, Maureen, C, Dolores, Geo, gary duke is right.

As Dolores put it the isolation depends on each individual's circumstances.

In my case after finishing my education I moved away a 1000 miles from the

place I am born & brought up--on work

IN the 60s, & 70s communication was limited to Postal (Mail) & Morse code

telegrams. This effectively cut off contact my boyhood friends & each of

them moved their own way - far away --I don't know where.

Till I worked I could share thoughts with a few of my co-workers. Now they

are not there - retired or having their own problems or gone.

I agree with C in that one of the most scary part due to my inability

to react in form of understandable speech is falls, fear of falls. Two days

back my 3 year old grandson playfully gently pushed me when I was walking in

my bed room with my walker, -- I couldn't tell anything to him .....could

only shout ............NO..... after a few crucial seconds & somehow avoided

a fall.

Jagan

[Guest guest]

Everyone, Eva, Maureen, C, Dolores, Geo, gary duke is right.

As Dolores put it the isolation depends on each individual's circumstances.

In my case after finishing my education I moved away a 1000 miles from the

place I am born & brought up--on work

IN the 60s, & 70s communication was limited to Postal (Mail) & Morse code

telegrams. This effectively cut off contact my boyhood friends & each of

them moved their own way - far away --I don't know where.

Till I worked I could share thoughts with a few of my co-workers. Now they

are not there - retired or having their own problems or gone.

I agree with C in that one of the most scary part due to my inability

to react in form of understandable speech is falls, fear of falls. Two days

back my 3 year old grandson playfully gently pushed me when I was walking in

my bed room with my walker, -- I couldn't tell anything to him .....could

only shout ............NO..... after a few crucial seconds & somehow avoided

a fall.

Jagan

[Guest guest]

Hi Jagan,

I am fortunate that I still have fairly good speech. My speech is

only slurred sometimes or soft or strained at other times. Or I have

to keep swallowing. I can still talk on the phone. I stopped working

6 years ago as my position was too stressful and my health went into

rapid decline. As soon as I stopped work, my health stabilised. I am

also very fortunate that I can still drive and get out on my own, so I

dont stay at home that much. But with my speech being the way it is,

I still find it very hard when I am in the mall and asking a shop

assistant for something over the counter. They always have trouble

hearing and understanding me and I loathe the stupid faces that they

pull. I always wonder if the shoe was on the other foot, would I put

on such a stupid look?? My friends have also dropped off and I just

speak to a few over the phone. Quite frankly, when they do visit, I

find it very hard to be with them. Just as Dolores has mentioned, and

I am very releived when they are gone. It takes alot out of me to

keep talking to them and when they go, I have to go and lie down to

recuperate. So it doesnt bother me that I dont see them. Also, PLS

has taken away alot of my personality, in that, I cant be the

vivacious person I used to be and I find that hard to cope with also.

So I am much happier just talking to them on the phone.

I can totally understand how hard it is for yourself and and

others who have lost their speech. My greatest fear at the moment is

that one day I will lose my speech totally. My speech problems began 3

years ago and one neurologist whom I hadnt seen for 2 years was so

surprised that I was still talking so well. As she put it plainly to

me " I thought you would have totally lost your speech by now " . I

thank God every night that i can still talk and tell God that I dont

care if I cant walk properly but I always want to be able to speak!! I

pray and pray and pray for this every night.

Losing the ability to speak is far worse than losing the ability to

walk. In my opinion anyway.

Maureen (Australia)

> >> >

> >> >............................................. We're hopeful that

> >> once

> >> > I get enough baclofen to ease the muscles that speech will come

> >> back.

> >> > Speech or lack of understandability causes social isolation worse

> >> than

> >> > any other symptom we have - and that includes bladder spasms. ha

> >

> >

> >

> >

> >

> >

[Guest guest]

Hey i have both Hyer nasal speech and spastic walk . No Spasms

though GEO

>

> I don't think you'd find too many of us with both speech and

mobility

> problems disagreeing Maureen! :-)

>

> Maureen wrote:

>

> > Losing the ability to speak is far worse than losing the ability to

> > walk. In my opinion anyway.

> >

> > Maureen (Australia)

>

[Guest guest]

, I am a bit confused with what you wrote below. There are SO MANY

of us with both speech and mobility problems. You and I are 2 of them.

Maureen (Australia)

>

> > Losing the ability to speak is far worse than losing the ability to

> > walk. In my opinion anyway.

> >

> > Maureen (Australia)

>

[Guest guest]

, I am a bit confused with what you wrote below. There are SO MANY

of us with both speech and mobility problems. You and I are 2 of them.

Maureen (Australia)

>

> > Losing the ability to speak is far worse than losing the ability to

> > walk. In my opinion anyway.

> >

> > Maureen (Australia)

>

[Guest guest]

, I am a bit confused with what you wrote below. There are SO MANY

of us with both speech and mobility problems. You and I are 2 of them.

Maureen (Australia)

>

> > Losing the ability to speak is far worse than losing the ability to

> > walk. In my opinion anyway.

> >

> > Maureen (Australia)

>

[Guest guest]

Hi Maureen,

I suspect you have misinterpreted my reply. All I was doing as someone

who suffers significantly from both problems was agreeing with you .

What did you think I meant? (puzzled look)

If my fairy godmother or a genie suddenly materialised and gave me the

choice of restoring either my speech or walking ability but not both I

am sure I would have no hesitation in choosing to have my speech

restored because not only does it isolate us but it compounds all our

other difficulties.

Maureen wrote:

> Hey , I cant believe what you wrote below. There are SO many of us

> PLSers with both speech and mobility problems. You and I are one of

> them.

>

> Maybe you misinterpreted what I wrote and maybe I have misinterpreted

> what you wrote.

>

> I am a bit confused.

>

> Maureen

>

>

> >

> > > Losing the ability to speak is far worse than losing the ability to

> > > walk. In my opinion anyway.

> > >

> > > Maureen (Australia)

[Guest guest]

Hi Maureen,

I suspect you have misinterpreted my reply. All I was doing as someone

who suffers significantly from both problems was agreeing with you .

What did you think I meant? (puzzled look)

If my fairy godmother or a genie suddenly materialised and gave me the

choice of restoring either my speech or walking ability but not both I

am sure I would have no hesitation in choosing to have my speech

restored because not only does it isolate us but it compounds all our

other difficulties.

Maureen wrote:

> Hey , I cant believe what you wrote below. There are SO many of us

> PLSers with both speech and mobility problems. You and I are one of

> them.

>

> Maybe you misinterpreted what I wrote and maybe I have misinterpreted

> what you wrote.

>

> I am a bit confused.

>

> Maureen

>

>

> >

> > > Losing the ability to speak is far worse than losing the ability to

> > > walk. In my opinion anyway.

> > >

> > > Maureen (Australia)

[Guest guest]

Hi Maureen,

I suspect you have misinterpreted my reply. All I was doing as someone

who suffers significantly from both problems was agreeing with you .

What did you think I meant? (puzzled look)

If my fairy godmother or a genie suddenly materialised and gave me the

choice of restoring either my speech or walking ability but not both I

am sure I would have no hesitation in choosing to have my speech

restored because not only does it isolate us but it compounds all our

other difficulties.

Maureen wrote:

> Hey , I cant believe what you wrote below. There are SO many of us

> PLSers with both speech and mobility problems. You and I are one of

> them.

>

> Maybe you misinterpreted what I wrote and maybe I have misinterpreted

> what you wrote.

>

> I am a bit confused.

>

> Maureen

>

>

> >

> > > Losing the ability to speak is far worse than losing the ability to

> > > walk. In my opinion anyway.

> > >

> > > Maureen (Australia)

[Guest guest]

Phew!!! :-)

Jagan wrote:

> Two days back my 3 year old grandson playfully gently pushed me when I

> was walking in my bed room with my walker, -- I couldn't tell anything

> to him .....could only shout ............NO..... after a few crucial

> seconds & somehow avoided a fall.

> Jagan

[Guest guest]

Hi Arlene well the definition for spasms is Atuomatic jerking

movements and can be painful .I dont know but my geuss is according to

the definition . I dont have these LOL Stiffness yes GEO

>

> Hi Geo,

>

> Funny when you say you don't have spasms...

> I told my ex-neuro I didn't have spasms, she grabbed my leg, pulled

it

> back and forth and said " yes, you do have spasms " . Kinda like she

was

> saying stiffness and spasms are related.

> Don't know, but have wondered.

> Arlene

>