Re: Just joined your group today!

[Guest guest]

Dear Liz,

Welcome to the PLS-Friends group. You will find that the name is very

appropriate as the members of the group are a great source of experiential

sharing and support. Your Dad's story of difficulty in getting a diagnosis

is very familiar to a lot of us. It took me almost 10 years to have a name

put on my symptoms. I've had symptoms, beginning with some weakness in the

legs and foot drop in 1987. My progression has been slow, but steady.

Unlike some others, I do not have any voice problems. I have fallen many

times. It is really important that we try to avoid falls because they can

result in serious injuries.

You, on the other hand, really have your " plate full " . Do whatever you can

to keep yourself well--rested, good nutrition, stress management. Is there

anyone else in your family to share some of the responsibility? I hope you

are lucky enough to have some support.

If you have some specific questions, please ask away. The group members are

very responsive and willing to help. There is always someone who has

experienced whatever you may need to know. I am a " no longer working "

Registered Dietitian. If you have any concerns in my department, I'll be

more than happy to help. It sounds like we may be neighbors--I live in CT.

Dolores Carron

Just joined your group today!

> Dear PLS Friends,

> My father was diagnosed with PLS last year. He has had symptoms for the

last

> 6 years. This is his story...Shortly after a fall at work in 1991, he

> developed back pain on and off. His MRI discovered disc herniations and

he

> received chiropractic manipulation to help with the pain. In 1996, he

> developed a drop foot. In 1997, an MRI of the spine discovered a thoracic

> arachnoid cyst and shortly after, he had surgery to remove it.

Immediately

> he saw improvement in his drop foot. In July of 1998, he was involved in

a

> car accident. He struck his head on the windshield and soon after

developed

> upper and lower extremity stiffness that progressively worsened. In 1999,

> after an EMG test was taken at North Shore Medical Hospital on Long

Island,

> NY, he was diagnosed with ALS and told he had 2-5 years to live. I will

> never forget the day - I sat next to him in the Neurologists office when

he

> got this news. We drove home together in shock. I could not accept this

> diagnosis after all the trouble with his spine, so we went for another

> opinion at Montefiore Medical, NY. Two Neurologists at Montefiore that

> worked with many ALS patients did not feel that my father had ALS. They

> entertained the possibility of PLS, but after looking at X-rays of his

> cervical spine (which had a disc protrusion possibly caused by hitting his

> head), they felt that his problems with spasticity, etc. were coming from

a

> nerve touching the protruding disc. They brought in a Neurosurgeon who

> agreed that my father should have a cervical laminectomy. They told us

that

> in many cases, the voice was lost temporarily but usually came back

> completely. He developed hoarseness that seemed to improve for a short

time

> and then got progressively worse. From then on, all of his symptoms

seemed

> to progress pretty rapidly. In 2000, we took him to another Neurologist

at

> Columbia Presbyterian, NYC. He ordered a Spectroscopy scan of the brain

and

> discovered that my father suffered a series of ischemic strokes which he

> implied might be the reason for his problems. But, after further

evaluation

> of my father's progression, a diagnosis of PLS was given.

> My mother has Multiple Sclerosis (can you believe it?) which makes me

wonder

> about the environmental theories. My father was a metal mechanic at Pan

> American Airlines for many years. I heard recently that an airport was

> closed down due to a large number of employees that developed ALS.

> My husband and I just recently moved into our first home, built an

apartment

> and moved my parents in. My mother is in much better condition than my

dad

> so she takes care of him. Dad has just about lost his voice, along with

the

> use of both upper and lower extremities. He is frustrated and yells at my

> mother all day. Of course, she cannot understand him which infuriates him

> even more. Everyone just feels helpless. He cries and laughs

> uncontrollably. The laughing is always welcome. My husband is very funny

> and always tries to make him laugh. Life, however if very difficult

these

> days for my family. In this past year, my husband graduated from college

(he

> went back to get a teaching degree), we had our first baby, I started my

own

> marketing business, we bought our first house and moved my parents in.

The

> new baby and business is all I can handle. So I help when I can, but wish

I

> could do more for them. My mom is getting tired and weak and is talking

> about a nursing home for the first time. I know that would be very

difficult

> on my dad since he will not be able to communicate his needs. All day

long,

> he has special needs. I just don't see how a nursing home would work. I

> would love to hear from all of you and learn anything I can about PLS to

help

> my parents. Thank God I found this site. Please write. I could use some

> words of wisdom from all of you.

> Sincerely,

> Liz

>

>

>

>

>

[Guest guest]

Dear Liz,

Welcome to the PLS-Friends group. You will find that the name is very

appropriate as the members of the group are a great source of experiential

sharing and support. Your Dad's story of difficulty in getting a diagnosis

is very familiar to a lot of us. It took me almost 10 years to have a name

put on my symptoms. I've had symptoms, beginning with some weakness in the

legs and foot drop in 1987. My progression has been slow, but steady.

Unlike some others, I do not have any voice problems. I have fallen many

times. It is really important that we try to avoid falls because they can

result in serious injuries.

You, on the other hand, really have your " plate full " . Do whatever you can

to keep yourself well--rested, good nutrition, stress management. Is there

anyone else in your family to share some of the responsibility? I hope you

are lucky enough to have some support.

If you have some specific questions, please ask away. The group members are

very responsive and willing to help. There is always someone who has

experienced whatever you may need to know. I am a " no longer working "

Registered Dietitian. If you have any concerns in my department, I'll be

more than happy to help. It sounds like we may be neighbors--I live in CT.

Dolores Carron

Just joined your group today!

> Dear PLS Friends,

> My father was diagnosed with PLS last year. He has had symptoms for the

last

> 6 years. This is his story...Shortly after a fall at work in 1991, he

> developed back pain on and off. His MRI discovered disc herniations and

he

> received chiropractic manipulation to help with the pain. In 1996, he

> developed a drop foot. In 1997, an MRI of the spine discovered a thoracic

> arachnoid cyst and shortly after, he had surgery to remove it.

Immediately

> he saw improvement in his drop foot. In July of 1998, he was involved in

a

> car accident. He struck his head on the windshield and soon after

developed

> upper and lower extremity stiffness that progressively worsened. In 1999,

> after an EMG test was taken at North Shore Medical Hospital on Long

Island,

> NY, he was diagnosed with ALS and told he had 2-5 years to live. I will

> never forget the day - I sat next to him in the Neurologists office when

he

> got this news. We drove home together in shock. I could not accept this

> diagnosis after all the trouble with his spine, so we went for another

> opinion at Montefiore Medical, NY. Two Neurologists at Montefiore that

> worked with many ALS patients did not feel that my father had ALS. They

> entertained the possibility of PLS, but after looking at X-rays of his

> cervical spine (which had a disc protrusion possibly caused by hitting his

> head), they felt that his problems with spasticity, etc. were coming from

a

> nerve touching the protruding disc. They brought in a Neurosurgeon who

> agreed that my father should have a cervical laminectomy. They told us

that

> in many cases, the voice was lost temporarily but usually came back

> completely. He developed hoarseness that seemed to improve for a short

time

> and then got progressively worse. From then on, all of his symptoms

seemed

> to progress pretty rapidly. In 2000, we took him to another Neurologist

at

> Columbia Presbyterian, NYC. He ordered a Spectroscopy scan of the brain

and

> discovered that my father suffered a series of ischemic strokes which he

> implied might be the reason for his problems. But, after further

evaluation

> of my father's progression, a diagnosis of PLS was given.

> My mother has Multiple Sclerosis (can you believe it?) which makes me

wonder

> about the environmental theories. My father was a metal mechanic at Pan

> American Airlines for many years. I heard recently that an airport was

> closed down due to a large number of employees that developed ALS.

> My husband and I just recently moved into our first home, built an

apartment

> and moved my parents in. My mother is in much better condition than my

dad

> so she takes care of him. Dad has just about lost his voice, along with

the

> use of both upper and lower extremities. He is frustrated and yells at my

> mother all day. Of course, she cannot understand him which infuriates him

> even more. Everyone just feels helpless. He cries and laughs

> uncontrollably. The laughing is always welcome. My husband is very funny

> and always tries to make him laugh. Life, however if very difficult

these

> days for my family. In this past year, my husband graduated from college

(he

> went back to get a teaching degree), we had our first baby, I started my

own

> marketing business, we bought our first house and moved my parents in.

The

> new baby and business is all I can handle. So I help when I can, but wish

I

> could do more for them. My mom is getting tired and weak and is talking

> about a nursing home for the first time. I know that would be very

difficult

> on my dad since he will not be able to communicate his needs. All day

long,

> he has special needs. I just don't see how a nursing home would work. I

> would love to hear from all of you and learn anything I can about PLS to

help

> my parents. Thank God I found this site. Please write. I could use some

> words of wisdom from all of you.

> Sincerely,

> Liz

>

>

>

>

>

[Guest guest]

Dear Dolores,

Thank you for your e-mail. It is good to hear from someone who understands.

I am glad to hear that you have a slow progression of the disease and that

you haven't lost your speech. I do have a question for you regarding

nutrition. My father has been very constipated. Is this a symptom of the

disease? He can go 7 days without a BM. Can you suggest any foods that we

should avoid or give him to help with this? Any advice would be appreciated.

Liz

Long Island, NY

[Guest guest]

Dear Dolores,

Thank you for your e-mail. It is good to hear from someone who understands.

I am glad to hear that you have a slow progression of the disease and that

you haven't lost your speech. I do have a question for you regarding

nutrition. My father has been very constipated. Is this a symptom of the

disease? He can go 7 days without a BM. Can you suggest any foods that we

should avoid or give him to help with this? Any advice would be appreciated.

Liz

Long Island, NY

[Guest guest]

Dear Vaughn,

You sound like such a nice man with a great sense of humor (now this is

sounding like a dating service). Anyway, I am glad to meet you. Your wife

sounds wonderful too. It is so amazing to me how little the medical

community understands about MS, PLS, ALS, Parkinsons, etc. Sometimes I

really wonder if they are just " winging it " .

I will check into the Zoloft for my dad. Thank you for your kind words.

Keep up that sense of humor - it works wonders. My best to you and family.

Liz

Long Island, NY

[Guest guest]

Thanks Rick.

We will try the Kashi. I am familiar with that cereal, I get it all the time

for myself. I was curious, if you have had this for 15 years, how are you

doing physically (speech, arms, legs etc.)? My father is asking me to find

out about others in a similar state. Thanks for the e-mail. Take care

Liz

[Guest guest]

Thanks Rick.

We will try the Kashi. I am familiar with that cereal, I get it all the time

for myself. I was curious, if you have had this for 15 years, how are you

doing physically (speech, arms, legs etc.)? My father is asking me to find

out about others in a similar state. Thanks for the e-mail. Take care

Liz

[Guest guest]

Liz,

If your plate gets any fuller, you're going to have to add sideboards. I

too have PLS after having MS for 9 years (so I was told by three neuro's and

one who co-wrote a book on dx'ing MS). So much for neuro's.

My symptoms are very light in comparison to some of our PLS-FRIENDS. I can

talk reasonably well (some say I never could talk very well), have severe

imbalance (use two fore arm canes), leg spasticity (valium for that), lack

of hand coordination control and general muscle weakness. Thankfully I have

no pain (except self inflicted). Mine too began with foot drop in 1987 and

s-l-o-w-l-y progressed (regressed) from there to a PLS dx in 1997. My

degeneration stopped about 5-7 years ago.

I too developed an uncontrollable laughing and crying problem, particularly

crying. My personality changed also into a curt, snapping demeanor. I

finally told my neuro about it and he prescribed Zoloft. It has worked

wonders. I can now listen to the Hallelujah Chorus and the National Anthem

without sobbing.

My mother died from complications of Parkinson's (which we're now

questioning) and I have a great-niece with classical MS (age 35). I'm 67

and am married to a wonderful, loving, caring and very effective care-giver

who does not hesitate to get in a Dr's face when he/she does not show the

proper level of concern or pay attention to what he/she is being told.

My heart goes out to you and your family. Just keep hanging in there like a

rusty fish hook.

Sent with love from:

Vaughn Hickman in Tennessee.

Just joined your group today!

> Dear PLS Friends,

> My father was diagnosed with PLS last year. He has had symptoms for the

last

> 6 years. This is his story...Shortly after a fall at work in 1991, he

> developed back pain on and off. His MRI discovered disc herniations and

he

> received chiropractic manipulation to help with the pain. In 1996, he

> developed a drop foot. In 1997, an MRI of the spine discovered a thoracic

> arachnoid cyst and shortly after, he had surgery to remove it.

Immediately

> he saw improvement in his drop foot. In July of 1998, he was involved in

a

> car accident. He struck his head on the windshield and soon after

developed

> upper and lower extremity stiffness that progressively worsened. In 1999,

> after an EMG test was taken at North Shore Medical Hospital on Long

Island,

> NY, he was diagnosed with ALS and told he had 2-5 years to live. I will

> never forget the day - I sat next to him in the Neurologists office when

he

> got this news. We drove home together in shock. I could not accept this

> diagnosis after all the trouble with his spine, so we went for another

> opinion at Montefiore Medical, NY. Two Neurologists at Montefiore that

> worked with many ALS patients did not feel that my father had ALS. They

> entertained the possibility of PLS, but after looking at X-rays of his

> cervical spine (which had a disc protrusion possibly caused by hitting his

> head), they felt that his problems with spasticity, etc. were coming from

a

> nerve touching the protruding disc. They brought in a Neurosurgeon who

> agreed that my father should have a cervical laminectomy. They told us

that

> in many cases, the voice was lost temporarily but usually came back

> completely. He developed hoarseness that seemed to improve for a short

time

> and then got progressively worse. From then on, all of his symptoms

seemed

> to progress pretty rapidly. In 2000, we took him to another Neurologist

at

> Columbia Presbyterian, NYC. He ordered a Spectroscopy scan of the brain

and

> discovered that my father suffered a series of ischemic strokes which he

> implied might be the reason for his problems. But, after further

evaluation

> of my father's progression, a diagnosis of PLS was given.

> My mother has Multiple Sclerosis (can you believe it?) which makes me

wonder

> about the environmental theories. My father was a metal mechanic at Pan

> American Airlines for many years. I heard recently that an airport was

> closed down due to a large number of employees that developed ALS.

> My husband and I just recently moved into our first home, built an

apartment

> and moved my parents in. My mother is in much better condition than my

dad

> so she takes care of him. Dad has just about lost his voice, along with

the

> use of both upper and lower extremities. He is frustrated and yells at my

> mother all day. Of course, she cannot understand him which infuriates him

> even more. Everyone just feels helpless. He cries and laughs

> uncontrollably. The laughing is always welcome. My husband is very funny

> and always tries to make him laugh. Life, however if very difficult

these

> days for my family. In this past year, my husband graduated from college

(he

> went back to get a teaching degree), we had our first baby, I started my

own

> marketing business, we bought our first house and moved my parents in.

The

> new baby and business is all I can handle. So I help when I can, but wish

I

> could do more for them. My mom is getting tired and weak and is talking

> about a nursing home for the first time. I know that would be very

difficult

> on my dad since he will not be able to communicate his needs. All day

long,

> he has special needs. I just don't see how a nursing home would work. I

> would love to hear from all of you and learn anything I can about PLS to

help

> my parents. Thank God I found this site. Please write. I could use some

> words of wisdom from all of you.

> Sincerely,

> Liz

>

>

>

>

>

[Guest guest]

Liz,

If your plate gets any fuller, you're going to have to add sideboards. I

too have PLS after having MS for 9 years (so I was told by three neuro's and

one who co-wrote a book on dx'ing MS). So much for neuro's.

My symptoms are very light in comparison to some of our PLS-FRIENDS. I can

talk reasonably well (some say I never could talk very well), have severe

imbalance (use two fore arm canes), leg spasticity (valium for that), lack

of hand coordination control and general muscle weakness. Thankfully I have

no pain (except self inflicted). Mine too began with foot drop in 1987 and

s-l-o-w-l-y progressed (regressed) from there to a PLS dx in 1997. My

degeneration stopped about 5-7 years ago.

I too developed an uncontrollable laughing and crying problem, particularly

crying. My personality changed also into a curt, snapping demeanor. I

finally told my neuro about it and he prescribed Zoloft. It has worked

wonders. I can now listen to the Hallelujah Chorus and the National Anthem

without sobbing.

My mother died from complications of Parkinson's (which we're now

questioning) and I have a great-niece with classical MS (age 35). I'm 67

and am married to a wonderful, loving, caring and very effective care-giver

who does not hesitate to get in a Dr's face when he/she does not show the

proper level of concern or pay attention to what he/she is being told.

My heart goes out to you and your family. Just keep hanging in there like a

rusty fish hook.

Sent with love from:

Vaughn Hickman in Tennessee.

Just joined your group today!

> Dear PLS Friends,

> My father was diagnosed with PLS last year. He has had symptoms for the

last

> 6 years. This is his story...Shortly after a fall at work in 1991, he

> developed back pain on and off. His MRI discovered disc herniations and

he

> received chiropractic manipulation to help with the pain. In 1996, he

> developed a drop foot. In 1997, an MRI of the spine discovered a thoracic

> arachnoid cyst and shortly after, he had surgery to remove it.

Immediately

> he saw improvement in his drop foot. In July of 1998, he was involved in

a

> car accident. He struck his head on the windshield and soon after

developed

> upper and lower extremity stiffness that progressively worsened. In 1999,

> after an EMG test was taken at North Shore Medical Hospital on Long

Island,

> NY, he was diagnosed with ALS and told he had 2-5 years to live. I will

> never forget the day - I sat next to him in the Neurologists office when

he

> got this news. We drove home together in shock. I could not accept this

> diagnosis after all the trouble with his spine, so we went for another

> opinion at Montefiore Medical, NY. Two Neurologists at Montefiore that

> worked with many ALS patients did not feel that my father had ALS. They

> entertained the possibility of PLS, but after looking at X-rays of his

> cervical spine (which had a disc protrusion possibly caused by hitting his

> head), they felt that his problems with spasticity, etc. were coming from

a

> nerve touching the protruding disc. They brought in a Neurosurgeon who

> agreed that my father should have a cervical laminectomy. They told us

that

> in many cases, the voice was lost temporarily but usually came back

> completely. He developed hoarseness that seemed to improve for a short

time

> and then got progressively worse. From then on, all of his symptoms

seemed

> to progress pretty rapidly. In 2000, we took him to another Neurologist

at

> Columbia Presbyterian, NYC. He ordered a Spectroscopy scan of the brain

and

> discovered that my father suffered a series of ischemic strokes which he

> implied might be the reason for his problems. But, after further

evaluation

> of my father's progression, a diagnosis of PLS was given.

> My mother has Multiple Sclerosis (can you believe it?) which makes me

wonder

> about the environmental theories. My father was a metal mechanic at Pan

> American Airlines for many years. I heard recently that an airport was

> closed down due to a large number of employees that developed ALS.

> My husband and I just recently moved into our first home, built an

apartment

> and moved my parents in. My mother is in much better condition than my

dad

> so she takes care of him. Dad has just about lost his voice, along with

the

> use of both upper and lower extremities. He is frustrated and yells at my

> mother all day. Of course, she cannot understand him which infuriates him

> even more. Everyone just feels helpless. He cries and laughs

> uncontrollably. The laughing is always welcome. My husband is very funny

> and always tries to make him laugh. Life, however if very difficult

these

> days for my family. In this past year, my husband graduated from college

(he

> went back to get a teaching degree), we had our first baby, I started my

own

> marketing business, we bought our first house and moved my parents in.

The

> new baby and business is all I can handle. So I help when I can, but wish

I

> could do more for them. My mom is getting tired and weak and is talking

> about a nursing home for the first time. I know that would be very

difficult

> on my dad since he will not be able to communicate his needs. All day

long,

> he has special needs. I just don't see how a nursing home would work. I

> would love to hear from all of you and learn anything I can about PLS to

help

> my parents. Thank God I found this site. Please write. I could use some

> words of wisdom from all of you.

> Sincerely,

> Liz

>

>

>

>

>

[Guest guest]

,

Thank you for the e-mail. We do have Medicaid, a new aid that just started

and is learning the ropes. I appreciate your ideas. My mom does need to get

away for a while.

Liz

[Guest guest]

,

Thank you for the e-mail. We do have Medicaid, a new aid that just started

and is learning the ropes. I appreciate your ideas. My mom does need to get

away for a while.

Liz

[Guest guest]

Dear Liz

A high fiber diet can help remedy constipation (resulting from inactivity,

inadequate fluid and fiber intake, various medications). The American

Dietetic Association recommends a daily fiber intake of 25-35 grams per day,

including 2-3 servings of fruit and 3-5 servings of vegetables. The fiber

content is listed on the labels of many foods. Here are some recommended

good fiber sources:

1. Dried beans, peas, legumes, including baked beans, kidney beans, split

peas, dried limas,

chick peas, pinto beans and black beans.

2. Bran cereals (check labels for fiber content)

3. Fresh or frozen lima beans

4. Fresh or frozen peas

5. Dried fruits, especially figs, apricots, and dates

6. Raspberries, blackberries, and strawberries

7. Corn

8. Whole wheat and other whole grain bread, pasta. and cereal products

9. Broccoli

10. Baked potato with the skin

11. Green snap beans, pole beans, and broad beans

12. Plums, pears, and apples

13. Raisins and prunes

14. Greens, including spinach, beet greens, kale, collards, Swiss chard, and

turnip greens

15. Nuts, especially almonds, Brazil nuts, peanuts,and walnuts

16. Cherries

17. Bananas

18. Carrots

19. Coconut

20. Brussels sprouts

Additionally, a fiber supplement such as Metamucil, FiberCon, etc. may be

helpful. It is extremely important that sufficient fluid accompany the

intake of these products or severe constipation/bowel impactment may occur.

There is a fiber supplement, called Unifiber that does not require a high

fluid intake. It is tasteless, can be added to liquids or such foods as

mashed potatoes, applesauce, etc. and does not get " gloppy " like Metamucil.

It may be a little harder to find, but it is a good product.

I hope this helps.

Dolores Carron

Re: Just joined your group today!

> Dear Dolores,

> Thank you for your e-mail. It is good to hear from someone who

understands.

> I am glad to hear that you have a slow progression of the disease and that

> you haven't lost your speech. I do have a question for you regarding

> nutrition. My father has been very constipated. Is this a symptom of the

> disease? He can go 7 days without a BM. Can you suggest any foods that

we

> should avoid or give him to help with this? Any advice would be

appreciated.

> Liz

> Long Island, NY

>

>

>

>

>

[Guest guest]

Luann,

It is nice to meet you too. My father's Dr. at Columbia Pres is Dr. Gooch.

Originally, I wanted him to see another doctor there (I believe his name is

Dr. Roland, but it has been a while so I am not sure on the name -he has

written books on ALS). They told me that he was on a sabbatical (sp?) to

write another book. So I took one of his associates, Dr. Gooch. He was O.K.

nothing special - I don't recommend him. We usually just leave feeling very

frustrated because we never get a straight answer. But it was a relief to

get the PLS diagnosis from him. We have decided to stop seeing Neurologists

for a while. The parking is terrible and the long drive into the city always

take it's toll on my father. We usually use the parking garage on the same

street. It is very difficult to transfer my dad from car to wheel chair, but

my husband is always there to help. My father always enjoys a hot dog across

the street, on the corner. I am happy to hear that your progression is

slower than my fathers. I can't believe what you said about the toxic waste

site. We had a gas leak coming from Exxon Gas Station on the corner of my

block where I grew up back in the mid 80's. It was discovered to have seeped

into the ground and half of my block was evacuated and there houses were

bought by Exxon. The houses were vacant for several months and there was a

big law suit with Exxon. It stopped about 5 houses away, so they said, so

my family stayed. Since then, we heard that a girl that lived directly

across the street (she would be about 45 today) has MS. My mother has MS and

my father has PLS. I often wonder how many others that stayed on the block

have similar problems.

I was also sorry to hear that you were first diagnosed with ALS. That must

have been very difficult for you. I am glad that you pursued other opinions.

Stay well and my best to your family. You are lucky to have the support of

your children and husband. Take Care.

Liz

Long Island, NY

[Guest guest]

Luann,

It is nice to meet you too. My father's Dr. at Columbia Pres is Dr. Gooch.

Originally, I wanted him to see another doctor there (I believe his name is

Dr. Roland, but it has been a while so I am not sure on the name -he has

written books on ALS). They told me that he was on a sabbatical (sp?) to

write another book. So I took one of his associates, Dr. Gooch. He was O.K.

nothing special - I don't recommend him. We usually just leave feeling very

frustrated because we never get a straight answer. But it was a relief to

get the PLS diagnosis from him. We have decided to stop seeing Neurologists

for a while. The parking is terrible and the long drive into the city always

take it's toll on my father. We usually use the parking garage on the same

street. It is very difficult to transfer my dad from car to wheel chair, but

my husband is always there to help. My father always enjoys a hot dog across

the street, on the corner. I am happy to hear that your progression is

slower than my fathers. I can't believe what you said about the toxic waste

site. We had a gas leak coming from Exxon Gas Station on the corner of my

block where I grew up back in the mid 80's. It was discovered to have seeped

into the ground and half of my block was evacuated and there houses were

bought by Exxon. The houses were vacant for several months and there was a

big law suit with Exxon. It stopped about 5 houses away, so they said, so

my family stayed. Since then, we heard that a girl that lived directly

across the street (she would be about 45 today) has MS. My mother has MS and

my father has PLS. I often wonder how many others that stayed on the block

have similar problems.

I was also sorry to hear that you were first diagnosed with ALS. That must

have been very difficult for you. I am glad that you pursued other opinions.

Stay well and my best to your family. You are lucky to have the support of

your children and husband. Take Care.

Liz

Long Island, NY

[Guest guest]

Dear ,

Thank you for your e-mail. Are you talking about the lactulose for

constipation? I am losing track of my e-mails. Please let me know if you

get a chance. Thanks again.

Liz

[Guest guest]

Dear ,

Thank you for your e-mail. Are you talking about the lactulose for

constipation? I am losing track of my e-mails. Please let me know if you

get a chance. Thanks again.

Liz

[Guest guest]

Carolyn, Woops, I am getting so confused. Thanks for the advice on the Kashi.

Liz

[Guest guest]

Hi Liz,

So sorry about your dad's condition on top of your mom with MS. That must

really be difficult. It sounds like you mom needs some help and with a new baby

you've got your hands full. Can you contact the local ALSA and/or MDA? They

might be able to offer some kind of insight into services that might be

available in your area. There are all kinds of organizations that offer

different levels of services, and a lot of them are on a volunteer basis or

reduced rates, dependent on your needs. Maybe even having someone stay with

your dad for a few hours so your mom can get away and have some quiet time to

herself.

Some of the aides for those with ALS would be very helpful for your dad,

especially with the communication problems. ALSA should be able to help you out

there. http://www.alsa.org/serving/category.cfm

Thomson

Solana Beach, Ca

Visit www.als-pls.org

and www.geocities.com/mdmfoo/pls.html

05/28/02

Contact: Bob Mackle

Director of Public Information

bobmackle@...

MDA Will Help Buy Communication Aids

TUCSON, Ariz., May 28, 2002 - The Muscular Dystrophy Association will help pay

for communications technology for people whose neuromuscular disorders have

robbed them of the ability to speak, the Association's president announced.

MDA President & CEO Ross said the new coverage in MDA's services program

was added because " communication is so essential to quality of life.

" Now, there's a large array of technological devices that enable people to

continue communicating even when neuromuscular disease has severely limited

their vocal abilities. We're pleased that we can help those we serve obtain this

vital equipment, " Ross said.

MDA will allow up to $2,000 for the one-time purchase of a communication device

such as a speech generator or speech synthesizer. These aids, known as

alternative and augmentative communication devices, must be prescribed by MDA

clinic physicians. Their purchase is covered by Medicare and by some private

insurance policies, and MDA will assist with costs not covered by these

programs.

The assistance is expected primarily to benefit people affected by amyotrophic

lateral sclerosis (Lou Gehrig's disease), Friedreich's ataxia, oculopharyngeal

muscular dystrophy and other disorders in which muscle weakness extends to the

tongue and other muscles involved in speech.

Those who receive MDA assistance with speech devices are asked to return them to

the Association when they're no longer being used. They'll then be added to

MDA's loan closet program.

MDA also assists those it serves with the purchase and repair of wheelchairs and

leg braces.

MDA is a voluntary health agency working to defeat more than 40 neuromuscular

diseases through programs of worldwide research, comprehensive services, and

far-reaching professional and public health education. The Association's

programs are funded almost entirely by individual private contributors.

[Guest guest]

I have a similar problem. My Dr. prescribed lactulose and it works

well. See if his Dr. will prescribe it.

Levy

[Guest guest]

I have a similar problem. My Dr. prescribed lactulose and it works

well. See if his Dr. will prescribe it.

Levy

[Guest guest]

Hi Liz

Nice to meet you. I live in NJ and also got the diagnosis of ALS

early in my disease. Actually my husband got the news but waited to

tell me. It's funny it was from the MS Center in NJ.

Finally went back to my original nuerologist who diagnosed me in 1988

with PLS at the age of 35. His name is Dr. and he is at Columbia

Presbyterian Hospital in NYC. Maybe your Dad and I have the same Dr.

Actually I was suppose to see him today but he cancelled the

aappointment. Where do you park when you go to the hospital? We

usually take someone with us one of our children so they can drive

around the block when we're in the office.

I also believe this whole disease is environmental, I was exposed to

pesticides and went to grade school across the street from on of the

worst toxic waste sites in the US.

I have progressed to speech problems and walk with a cane around the

house and assisted outside the home. I also have the crying and

laughter problems.

Good luck to you and your family.

Luann in NJ

In 1999,

> after an EMG test was taken at North Shore Medical Hospital on Long

Island,

> NY, he was diagnosed with ALS and told he had 2-5 years to live. I

will

> never forget the day - I sat next to him in the Neurologists office

when he

> got this news. We drove home together in shock. In 2000, we took

him to another Neurologist at

> Columbia Presbyterian, NYC.

> My mother has Multiple Sclerosis (can you believe it?) which makes

me wonder

> about the environmental theories. My father was a metal mechanic at

Pan

> American Airlines for many years. I heard recently that an airport

was

> closed down due to a large number of employees that developed ALS.

Dad has just about lost his voice, along with the

> use of both upper and lower extremities. He is frustrated and yells

at my

> mother all day. Of course, she cannot understand him which

infuriates him

> even more. Everyone just feels helpless. He cries and laughs

> uncontrollably. The laughing is always welcome.

[Guest guest]

Hi Liz

Nice to meet you. I live in NJ and also got the diagnosis of ALS

early in my disease. Actually my husband got the news but waited to

tell me. It's funny it was from the MS Center in NJ.

Finally went back to my original nuerologist who diagnosed me in 1988

with PLS at the age of 35. His name is Dr. and he is at Columbia

Presbyterian Hospital in NYC. Maybe your Dad and I have the same Dr.

Actually I was suppose to see him today but he cancelled the

aappointment. Where do you park when you go to the hospital? We

usually take someone with us one of our children so they can drive

around the block when we're in the office.

I also believe this whole disease is environmental, I was exposed to

pesticides and went to grade school across the street from on of the

worst toxic waste sites in the US.

I have progressed to speech problems and walk with a cane around the

house and assisted outside the home. I also have the crying and

laughter problems.

Good luck to you and your family.

Luann in NJ

In 1999,

> after an EMG test was taken at North Shore Medical Hospital on Long

Island,

> NY, he was diagnosed with ALS and told he had 2-5 years to live. I

will

> never forget the day - I sat next to him in the Neurologists office

when he

> got this news. We drove home together in shock. In 2000, we took

him to another Neurologist at

> Columbia Presbyterian, NYC.

> My mother has Multiple Sclerosis (can you believe it?) which makes

me wonder

> about the environmental theories. My father was a metal mechanic at

Pan

> American Airlines for many years. I heard recently that an airport

was

> closed down due to a large number of employees that developed ALS.

Dad has just about lost his voice, along with the

> use of both upper and lower extremities. He is frustrated and yells

at my

> mother all day. Of course, she cannot understand him which

infuriates him

> even more. Everyone just feels helpless. He cries and laughs

> uncontrollably. The laughing is always welcome.

[Guest guest]

---Actually Liz I think that was me that told you about the kashi,

anyway I have had it for 18 years now. Mine is mostly in my legs and

I started walking with a cane 2 years ago and now use it around the

house and if I go out by myself I use a walker. When we travel I have

to use a wheelchair through the airports. Carolyn In PLS-

FRIENDS@y..., lldesigninfo@a... wrote:

> Thanks Rick.

> We will try the Kashi. I am familiar with that cereal, I get it

all the time

> for myself. I was curious, if you have had this for 15 years, how

are you

> doing physically (speech, arms, legs etc.)? My father is asking

me to find

> out about others in a similar state. Thanks for the e-mail. Take

care

> Liz

[Guest guest]

---Actually Liz I think that was me that told you about the kashi,

anyway I have had it for 18 years now. Mine is mostly in my legs and

I started walking with a cane 2 years ago and now use it around the

house and if I go out by myself I use a walker. When we travel I have

to use a wheelchair through the airports. Carolyn In PLS-

FRIENDS@y..., lldesigninfo@a... wrote:

> Thanks Rick.

> We will try the Kashi. I am familiar with that cereal, I get it

all the time

> for myself. I was curious, if you have had this for 15 years, how

are you

> doing physically (speech, arms, legs etc.)? My father is asking

me to find

> out about others in a similar state. Thanks for the e-mail. Take

care

> Liz

[Guest guest]

Yes, lactulose is for constipation.

Levy