PLS treatments

[Guest guest]

Hello,

I tried acupuncture before I was dx with PLS. It didn't seem to help

me either.

Mills

[Guest guest]

Welcome tell us a little about yourself. Nice to have you join the

group wish it was a group for the richest people in the world. Which would

mean we would all be rich. Well, we may not be rich here in this group. But

let me tell you this is one group that may not be rich with money. But you

will not believe the kindness, caring people you will meet here. Nice to meet

you . Shirley (Michigan)

[Guest guest]

I have tried acupuncture. Unfortunately, it had no discernable effect.

Levy

[Guest guest]

In a message dated 9/22/2002 12:26:11 PM Pacific Daylight Time,

frazer.lindsay@... writes:

> A question - has anyone tried, and found beneficial, treatment by

> acupuncture?

>

A few of us have with no positive results--as best I remember.

Not for me anyway.

Gentner

[Guest guest]

Hi and welcome to our group.

I tried acupuncture with no lasting benefits.

If you go to the PLS Awareness site:

http://www.geocities.com/mdmfoo/Data.html

you can read about other PLSers. We have 32 listed and would like to get more.

Feel free to submit what ever info you are comfortable with. Just leave a

question blank if you don't want to answer it.

Also, those that have submitted their data, I realized that it is time to update

my info. To do so, fill in the areas that need updating, add your name and

check the update box. I'll change those areas you have edited, leaving the rest

as they are.

Thomson

Solana Beach, Ca

Visit www.als-pls.org

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

[Guest guest]

Hi and welcome to our group.

I tried acupuncture with no lasting benefits.

If you go to the PLS Awareness site:

http://www.geocities.com/mdmfoo/Data.html

you can read about other PLSers. We have 32 listed and would like to get more.

Feel free to submit what ever info you are comfortable with. Just leave a

question blank if you don't want to answer it.

Also, those that have submitted their data, I realized that it is time to update

my info. To do so, fill in the areas that need updating, add your name and

check the update box. I'll change those areas you have edited, leaving the rest

as they are.

Thomson

Solana Beach, Ca

Visit www.als-pls.org

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

[Guest guest]

, you are so right in what you have said. This is a sucky disease

(using someone's elses description) you must make the best of a terrible

situation. Don't sit around and let this thing take a hold of you do what

ever it takes to live a normal life as possible. I to didn't what to use a

cane but finally did and since then now use a four wheel walk and have a

scooter for those long trips out. What a change it will make in your life

just to know you still can get out there. Sure people will look but most of

the time they are very helpful opening doors and God bless them. This site

will be so helpful knowing you are not alone.............Flora Brand/Florida

[Guest guest]

, you are so right in what you have said. This is a sucky disease

(using someone's elses description) you must make the best of a terrible

situation. Don't sit around and let this thing take a hold of you do what

ever it takes to live a normal life as possible. I to didn't what to use a

cane but finally did and since then now use a four wheel walk and have a

scooter for those long trips out. What a change it will make in your life

just to know you still can get out there. Sure people will look but most of

the time they are very helpful opening doors and God bless them. This site

will be so helpful knowing you are not alone.............Flora Brand/Florida

[Guest guest]

, you are so right in what you have said. This is a sucky disease

(using someone's elses description) you must make the best of a terrible

situation. Don't sit around and let this thing take a hold of you do what

ever it takes to live a normal life as possible. I to didn't what to use a

cane but finally did and since then now use a four wheel walk and have a

scooter for those long trips out. What a change it will make in your life

just to know you still can get out there. Sure people will look but most of

the time they are very helpful opening doors and God bless them. This site

will be so helpful knowing you are not alone.............Flora Brand/Florida

[Guest guest]

Thank you to grammyflanagan and all those who kindly responded to my

query about acupuncture. Clearly it's suck-it-and-see, and I will

take on board all your kind advice.

Thank you to Viv and grammy for the welcome to PLSfriends. Having

read what I can on the net about my condition I do not yet know

whether I am relieved to know what I've got or not. At least I now

know and my wife and I can begin to plan.

I'm 66 and now retired. My wife and I have two children and six

fantastic grandchildren. My days are kept busy walking our Tibetan

terrier Mr Tibs, swimming, gymming and being a house husband. My wife

Joan teaches swimming to children in a special needs school and when

I see some of them with their multiple disabilities I know how

fortunate I am. I am sure I can cope with it.

It seems most of you are across the pond in the US of A. I am just

looking from my study window on the most perfect autumn day in

Edinburgh, Scotland.

Talk again soon,

Frazer

[Guest guest]

Thank you to grammyflanagan and all those who kindly responded to my

query about acupuncture. Clearly it's suck-it-and-see, and I will

take on board all your kind advice.

Thank you to Viv and grammy for the welcome to PLSfriends. Having

read what I can on the net about my condition I do not yet know

whether I am relieved to know what I've got or not. At least I now

know and my wife and I can begin to plan.

I'm 66 and now retired. My wife and I have two children and six

fantastic grandchildren. My days are kept busy walking our Tibetan

terrier Mr Tibs, swimming, gymming and being a house husband. My wife

Joan teaches swimming to children in a special needs school and when

I see some of them with their multiple disabilities I know how

fortunate I am. I am sure I can cope with it.

It seems most of you are across the pond in the US of A. I am just

looking from my study window on the most perfect autumn day in

Edinburgh, Scotland.

Talk again soon,

Frazer

[Guest guest]

Greetings to all of the newly diagnosed folks! Seems like there's been quite a

few over the past several months. I've been kinda quiet lately, but still

reading everyday, twice a day. New arrivals have probably sensed by now that

this is the place to be for PLS information, symptoms, cajoling, crying,

support, etc. There's a lotta love here and it does help as we trudge along

this path with so many working towards, hoping for and praying for a

breakthrough and a cure. It will happen, hang in there.

Just a few comments so the newest arrivals won't feel as though their m symptoms

or attempts at relief from the various symptoms are unusual.

I'm a 48 y/o, who diagnosed in January 1998, but had noticeable symptoms since

approx 1994. I went through the myriad of tests to eliminate all other

possibilities; had the dreaded spinal headache due to the lumbar puncture. What

a memory!! Had the EMGs. As you can see, most of us have traveled this route

at one time or the other. It's no fun, i.e., trying to find answers, but keep

searching and visiting this site. You won't feel so alone.

I medically retired in March 2001 after fighting the symptoms of lost of

balance; loss of volume in my speech; running out of air in the middle of words;

uncontrollable laughter; crying at the music of a Ford commercial; hyper reflex

issues; problems with swallowing, choking on my own saliva, etc. I tried

acupuncture with no results. Originally tried baclofen; it made me feel

" stupid " and I couldn't add simple numbers. Went to Zanaflex and it put me to

sleep within minutes. Both were probably at too high of a dosage. My neuro

then prescribed Neurontin and I took it for about a year. It was very

tolerable, but other than keeping the fasiculations minimized, I didn't feel it

was helping my spasticity. We returned to baclofen at 10 mg, 3 times a day (much

lower than original dosage) and I " believe " it's helpful. This lower dosage

doesn't make my legs feel like " jello " which the neuro said was due to an

" exaggerated " decrease in the spasticity, nor do I have that foggy-headed

feeling.

Now, almost 5 years after my " official " diagnosis, I find that my balance has

worsened. I started out refusing to use a cane due to vanity and that " male

ego " thing; started using one in Oct 200 after a bad fall. I progressed to a

four wheeled walker in May 2001 (best thing I ever did so far re: PLS) and have

remained " independent " because of it. I still drive and travel distances alone

due to the use of the walker. To those newly diagnosed..........PLEASE use the

cane or walker at the first sign of problems with balance. Put aside any vanity

and do it. People will ask fewer annoying questions, e.g., have you been

drinking and you will be safer.

PLS is an insidious and progressive condition, no one will dispute that. On Oct

2 I will be " fitted " for a powered wheelchair because it has become virtually

impossible to walk around the mall or walk the campuses with my daughters at

their universities. I refuse to stop living and as much as I hate the idea of

having to use a wheelchair, if it's the means to keep me " active " and able to

travel locally or otherwise, I'll put my rear end in the chair and GO!! Like

many of us here, I also get fatigued easily and find myself " fighting' through

it. Thanks to Mrs. Neff, I use NADH daily and it's been helpful to combat the

fatigue. I also overdo it some days and have to " recover " the following day by

doing much less. I also attend aquatherapy in a heated pool twice a week and

this, I do believe, has been my " saving grace " . It's very helpful and is an

excellent source of cardiovascular exercise; strengthening and an unbelievable

assistance for the balance issue we all face with PLS.

I apologize for being so lengthy. I just feel the need to share with the newest

arrivals, because I, too once felt very alone with this condition until I found

TR.'s website and subsequently,Mark Weber's PLS Friends listserver. As

we're now seeing as a result of the so many efforts over the last year, there is

strength in numbers.

I must say the one thing I dread the most about PLS is the fact that I have

progressively lost my ability to communicate as well as I once did. Because my

tongue and soft palate are both affected, I do slur words and people who I meet

have a difficult time hearing and/or understanding me. So, I speak more slowly

and try to overcome. Hey, I don't give up! I have a follow up

appointment with my speech pathologist tomorrow to " test " an assistive device

that'll amplify my voice. I know it won't help with the clarity of my speech,

but at least I can speak slowly and loud enough for folks to hear me. You

should see me when I pull up to a Burger King drive thru window. I actually

carry a small megaphone in my car, so the person at the drive thru can hear me

when I order that chocolate shake!! LOL

Sorry for the length. Just needed to share my experiences and hope that some of

the information helps at least one person. It makes it all worthwhile.

Regards,

(DE)

P.S. If you ever have the opportunity to attend a gathering of PLS folks and

their caregivers, spouses, etc....GO!!! You will meet some wonderful people,

learn so much and come away renewed and refreshed despite your own personal

symptoms.

Original Message -----

From: frazerlindsay

To: PLS-FRIENDS

Sent: Sunday, September 22, 2002 3:26 PM

Subject: PLS treatments

A new member with a lot to do to catch up - which I hope to do soon.

Only just diagnosed after three/four years of tests. Am trying

massage, muscle toning in the gym and aquaaerobics, the latter seems

so far to be most helpful.

A question - has anyone tried, and found beneficial, treatment by

acupuncture?

[Guest guest]

Greetings to all of the newly diagnosed folks! Seems like there's been quite a

few over the past several months. I've been kinda quiet lately, but still

reading everyday, twice a day. New arrivals have probably sensed by now that

this is the place to be for PLS information, symptoms, cajoling, crying,

support, etc. There's a lotta love here and it does help as we trudge along

this path with so many working towards, hoping for and praying for a

breakthrough and a cure. It will happen, hang in there.

Just a few comments so the newest arrivals won't feel as though their m symptoms

or attempts at relief from the various symptoms are unusual.

I'm a 48 y/o, who diagnosed in January 1998, but had noticeable symptoms since

approx 1994. I went through the myriad of tests to eliminate all other

possibilities; had the dreaded spinal headache due to the lumbar puncture. What

a memory!! Had the EMGs. As you can see, most of us have traveled this route

at one time or the other. It's no fun, i.e., trying to find answers, but keep

searching and visiting this site. You won't feel so alone.

I medically retired in March 2001 after fighting the symptoms of lost of

balance; loss of volume in my speech; running out of air in the middle of words;

uncontrollable laughter; crying at the music of a Ford commercial; hyper reflex

issues; problems with swallowing, choking on my own saliva, etc. I tried

acupuncture with no results. Originally tried baclofen; it made me feel

" stupid " and I couldn't add simple numbers. Went to Zanaflex and it put me to

sleep within minutes. Both were probably at too high of a dosage. My neuro

then prescribed Neurontin and I took it for about a year. It was very

tolerable, but other than keeping the fasiculations minimized, I didn't feel it

was helping my spasticity. We returned to baclofen at 10 mg, 3 times a day (much

lower than original dosage) and I " believe " it's helpful. This lower dosage

doesn't make my legs feel like " jello " which the neuro said was due to an

" exaggerated " decrease in the spasticity, nor do I have that foggy-headed

feeling.

Now, almost 5 years after my " official " diagnosis, I find that my balance has

worsened. I started out refusing to use a cane due to vanity and that " male

ego " thing; started using one in Oct 200 after a bad fall. I progressed to a

four wheeled walker in May 2001 (best thing I ever did so far re: PLS) and have

remained " independent " because of it. I still drive and travel distances alone

due to the use of the walker. To those newly diagnosed..........PLEASE use the

cane or walker at the first sign of problems with balance. Put aside any vanity

and do it. People will ask fewer annoying questions, e.g., have you been

drinking and you will be safer.

PLS is an insidious and progressive condition, no one will dispute that. On Oct

2 I will be " fitted " for a powered wheelchair because it has become virtually

impossible to walk around the mall or walk the campuses with my daughters at

their universities. I refuse to stop living and as much as I hate the idea of

having to use a wheelchair, if it's the means to keep me " active " and able to

travel locally or otherwise, I'll put my rear end in the chair and GO!! Like

many of us here, I also get fatigued easily and find myself " fighting' through

it. Thanks to Mrs. Neff, I use NADH daily and it's been helpful to combat the

fatigue. I also overdo it some days and have to " recover " the following day by

doing much less. I also attend aquatherapy in a heated pool twice a week and

this, I do believe, has been my " saving grace " . It's very helpful and is an

excellent source of cardiovascular exercise; strengthening and an unbelievable

assistance for the balance issue we all face with PLS.

I apologize for being so lengthy. I just feel the need to share with the newest

arrivals, because I, too once felt very alone with this condition until I found

TR.'s website and subsequently,Mark Weber's PLS Friends listserver. As

we're now seeing as a result of the so many efforts over the last year, there is

strength in numbers.

I must say the one thing I dread the most about PLS is the fact that I have

progressively lost my ability to communicate as well as I once did. Because my

tongue and soft palate are both affected, I do slur words and people who I meet

have a difficult time hearing and/or understanding me. So, I speak more slowly

and try to overcome. Hey, I don't give up! I have a follow up

appointment with my speech pathologist tomorrow to " test " an assistive device

that'll amplify my voice. I know it won't help with the clarity of my speech,

but at least I can speak slowly and loud enough for folks to hear me. You

should see me when I pull up to a Burger King drive thru window. I actually

carry a small megaphone in my car, so the person at the drive thru can hear me

when I order that chocolate shake!! LOL

Sorry for the length. Just needed to share my experiences and hope that some of

the information helps at least one person. It makes it all worthwhile.

Regards,

(DE)

P.S. If you ever have the opportunity to attend a gathering of PLS folks and

their caregivers, spouses, etc....GO!!! You will meet some wonderful people,

learn so much and come away renewed and refreshed despite your own personal

symptoms.

Original Message -----

From: frazerlindsay

To: PLS-FRIENDS

Sent: Sunday, September 22, 2002 3:26 PM

Subject: PLS treatments

A new member with a lot to do to catch up - which I hope to do soon.

Only just diagnosed after three/four years of tests. Am trying

massage, muscle toning in the gym and aquaaerobics, the latter seems

so far to be most helpful.

A question - has anyone tried, and found beneficial, treatment by

acupuncture?

[Guest guest]

Greetings to all of the newly diagnosed folks! Seems like there's been quite a

few over the past several months. I've been kinda quiet lately, but still

reading everyday, twice a day. New arrivals have probably sensed by now that

this is the place to be for PLS information, symptoms, cajoling, crying,

support, etc. There's a lotta love here and it does help as we trudge along

this path with so many working towards, hoping for and praying for a

breakthrough and a cure. It will happen, hang in there.

Just a few comments so the newest arrivals won't feel as though their m symptoms

or attempts at relief from the various symptoms are unusual.

I'm a 48 y/o, who diagnosed in January 1998, but had noticeable symptoms since

approx 1994. I went through the myriad of tests to eliminate all other

possibilities; had the dreaded spinal headache due to the lumbar puncture. What

a memory!! Had the EMGs. As you can see, most of us have traveled this route

at one time or the other. It's no fun, i.e., trying to find answers, but keep

searching and visiting this site. You won't feel so alone.

I medically retired in March 2001 after fighting the symptoms of lost of

balance; loss of volume in my speech; running out of air in the middle of words;

uncontrollable laughter; crying at the music of a Ford commercial; hyper reflex

issues; problems with swallowing, choking on my own saliva, etc. I tried

acupuncture with no results. Originally tried baclofen; it made me feel

" stupid " and I couldn't add simple numbers. Went to Zanaflex and it put me to

sleep within minutes. Both were probably at too high of a dosage. My neuro

then prescribed Neurontin and I took it for about a year. It was very

tolerable, but other than keeping the fasiculations minimized, I didn't feel it

was helping my spasticity. We returned to baclofen at 10 mg, 3 times a day (much

lower than original dosage) and I " believe " it's helpful. This lower dosage

doesn't make my legs feel like " jello " which the neuro said was due to an

" exaggerated " decrease in the spasticity, nor do I have that foggy-headed

feeling.

Now, almost 5 years after my " official " diagnosis, I find that my balance has

worsened. I started out refusing to use a cane due to vanity and that " male

ego " thing; started using one in Oct 200 after a bad fall. I progressed to a

four wheeled walker in May 2001 (best thing I ever did so far re: PLS) and have

remained " independent " because of it. I still drive and travel distances alone

due to the use of the walker. To those newly diagnosed..........PLEASE use the

cane or walker at the first sign of problems with balance. Put aside any vanity

and do it. People will ask fewer annoying questions, e.g., have you been

drinking and you will be safer.

PLS is an insidious and progressive condition, no one will dispute that. On Oct

2 I will be " fitted " for a powered wheelchair because it has become virtually

impossible to walk around the mall or walk the campuses with my daughters at

their universities. I refuse to stop living and as much as I hate the idea of

having to use a wheelchair, if it's the means to keep me " active " and able to

travel locally or otherwise, I'll put my rear end in the chair and GO!! Like

many of us here, I also get fatigued easily and find myself " fighting' through

it. Thanks to Mrs. Neff, I use NADH daily and it's been helpful to combat the

fatigue. I also overdo it some days and have to " recover " the following day by

doing much less. I also attend aquatherapy in a heated pool twice a week and

this, I do believe, has been my " saving grace " . It's very helpful and is an

excellent source of cardiovascular exercise; strengthening and an unbelievable

assistance for the balance issue we all face with PLS.

I apologize for being so lengthy. I just feel the need to share with the newest

arrivals, because I, too once felt very alone with this condition until I found

TR.'s website and subsequently,Mark Weber's PLS Friends listserver. As

we're now seeing as a result of the so many efforts over the last year, there is

strength in numbers.

I must say the one thing I dread the most about PLS is the fact that I have

progressively lost my ability to communicate as well as I once did. Because my

tongue and soft palate are both affected, I do slur words and people who I meet

have a difficult time hearing and/or understanding me. So, I speak more slowly

and try to overcome. Hey, I don't give up! I have a follow up

appointment with my speech pathologist tomorrow to " test " an assistive device

that'll amplify my voice. I know it won't help with the clarity of my speech,

but at least I can speak slowly and loud enough for folks to hear me. You

should see me when I pull up to a Burger King drive thru window. I actually

carry a small megaphone in my car, so the person at the drive thru can hear me

when I order that chocolate shake!! LOL

Sorry for the length. Just needed to share my experiences and hope that some of

the information helps at least one person. It makes it all worthwhile.

Regards,

(DE)

P.S. If you ever have the opportunity to attend a gathering of PLS folks and

their caregivers, spouses, etc....GO!!! You will meet some wonderful people,

learn so much and come away renewed and refreshed despite your own personal

symptoms.

Original Message -----

From: frazerlindsay

To: PLS-FRIENDS

Sent: Sunday, September 22, 2002 3:26 PM

Subject: PLS treatments

A new member with a lot to do to catch up - which I hope to do soon.

Only just diagnosed after three/four years of tests. Am trying

massage, muscle toning in the gym and aquaaerobics, the latter seems

so far to be most helpful.

A question - has anyone tried, and found beneficial, treatment by

acupuncture?

[Guest guest]

Frazer,

I am 70, my husband 71 and we retired last Dec. 1st after working together

for 12 years in a small in-home business. We are so busy all the time, it

leaves little time for self pity. He had a brain tumor removed in 1994 and

had to quit the job he loved and had to have ME as a boss!!! We both enjoyed

the people coming in daily and many became good friends.

I was diagnosed in 1996 with PLS and am still able to walk short distances

with a 3 wheel walker. Everything in our house is on wheels. We use an AV

cart to haul food and dishes around on and a cart on the second floor to

deliver laundry to the washer and dryer....we moved those to the 2nd floor

almost 2 years ago when it became too difficult to carry clothes to the

basement.

We hae been married nearly 52 years and have 4 wonderful, talented daughters

and 11 grandchildren who are all very special. We have lots of noisy

get-togthers and just have fun!

Have a glorious day,

Peace and blessings,

Vivian

[Guest guest]

Frazer,

I am 70, my husband 71 and we retired last Dec. 1st after working together

for 12 years in a small in-home business. We are so busy all the time, it

leaves little time for self pity. He had a brain tumor removed in 1994 and

had to quit the job he loved and had to have ME as a boss!!! We both enjoyed

the people coming in daily and many became good friends.

I was diagnosed in 1996 with PLS and am still able to walk short distances

with a 3 wheel walker. Everything in our house is on wheels. We use an AV

cart to haul food and dishes around on and a cart on the second floor to

deliver laundry to the washer and dryer....we moved those to the 2nd floor

almost 2 years ago when it became too difficult to carry clothes to the

basement.

We hae been married nearly 52 years and have 4 wonderful, talented daughters

and 11 grandchildren who are all very special. We have lots of noisy

get-togthers and just have fun!

Have a glorious day,

Peace and blessings,

Vivian

[Guest guest]

Frazer,

I am 70, my husband 71 and we retired last Dec. 1st after working together

for 12 years in a small in-home business. We are so busy all the time, it

leaves little time for self pity. He had a brain tumor removed in 1994 and

had to quit the job he loved and had to have ME as a boss!!! We both enjoyed

the people coming in daily and many became good friends.

I was diagnosed in 1996 with PLS and am still able to walk short distances

with a 3 wheel walker. Everything in our house is on wheels. We use an AV

cart to haul food and dishes around on and a cart on the second floor to

deliver laundry to the washer and dryer....we moved those to the 2nd floor

almost 2 years ago when it became too difficult to carry clothes to the

basement.

We hae been married nearly 52 years and have 4 wonderful, talented daughters

and 11 grandchildren who are all very special. We have lots of noisy

get-togthers and just have fun!

Have a glorious day,

Peace and blessings,

Vivian

[Guest guest]

Bravo to you for all your courage and support to others. Yes, it's great to

know others in the same boat and we always come home refreshed after being

with our PLS friends. Vivian

[Guest guest]

Bravo to you for all your courage and support to others. Yes, it's great to

know others in the same boat and we always come home refreshed after being

with our PLS friends. Vivian

[Guest guest]

Bravo to you for all your courage and support to others. Yes, it's great to

know others in the same boat and we always come home refreshed after being

with our PLS friends. Vivian

[Guest guest]

Put a bicycle horn on your walker and scooter and it always breaks the ice

with folks. Total strangers comment on it with a smile in rerstaurants, rest

stops and especially church. Vivian

[Guest guest]

Put a bicycle horn on your walker and scooter and it always breaks the ice

with folks. Total strangers comment on it with a smile in rerstaurants, rest

stops and especially church. Vivian

[Guest guest]

Put a bicycle horn on your walker and scooter and it always breaks the ice

with folks. Total strangers comment on it with a smile in rerstaurants, rest

stops and especially church. Vivian

[Guest guest]

,

Since this is a reply to a reply, I'll keep it short. I have also found

water walking and a four wheeled walker to be extremely helpful.

Unfortunately, I use the pool infrequently because of lack of one. The

walker was 1st a loaner for 14 weeks, then I purchased my own. I have to

use 8 inch balloon type wheels to get around the grass and gravel

surrounding soccer fields and have found it easier to control The price

is just $11 more than one with 5 inch wheels. I am pleased to hear from

you and glad that you are going to keep up with your daughters. As you

probably know, a positive attitude is very important in keeping the

disease from owning you. I guess we have to confront this wacky disease

instead of letting it confront and control us. I'm 54, have had PLS

symptoms since 1994, possibly earlier. Got diagnosed in 1996 and

returned to work as a therapist at a large State Mental Hospital. I'm

lucky to be able to continue working, as so many others, like yourself,

have had to " retire. " Ms. Neff convinced me to try NADH, also, but it

didn't work after 3 months of trial. I'm now on CoQ10 and have noticed a

difference. I have also heard somewhere that a combination of the two is

tremendous. Wish I could afford to try.

Keep going and keep talking. And try not to have any more spinal taps.

Those headaches are nothing to sneeze with. It hurts!

Mike Gray

wrote:

> Greetings to all of the newly diagnosed folks! Seems like there's

> been quite a few over the past several months. I've been kinda quiet

> lately, but still reading everyday, twice a day. New arrivals have

> probably sensed by now that this is the place to be for PLS

> information, symptoms, cajoling, crying, support, etc. There's a

> lotta love here and it does help as we trudge along this path with so

> many working towards, hoping for and praying for a breakthrough and a

> cure. It will happen, hang in there.

> Just a few comments so the newest arrivals won't feel as though their

> m symptoms or attempts at relief from the various symptoms are unusual.

> I'm a 48 y/o, who diagnosed in January 1998, but had noticeable

> symptoms since approx 1994. I went through the myriad of tests to

> eliminate all other possibilities; had the dreaded spinal headache due

> to the lumbar puncture. What a memory!! Had the EMGs. As you can

> see, most of us have traveled this route at one time or the other.

> It's no fun, i.e., trying to find answers, but keep searching and

> visiting this site. You won't feel so alone.

> I medically retired in March 2001 after fighting the symptoms of lost

> of balance; loss of volume in my speech; running out of air in the

> middle of words; uncontrollable laughter; crying at the music of a

> Ford commercial; hyper reflex issues; problems with swallowing,

> choking on my own saliva, etc. I tried acupuncture with no results.

> Originally tried baclofen; it made me feel " stupid " and I couldn't add

> simple numbers. Went to Zanaflex and it put me to sleep within

> minutes. Both were probably at too high of a dosage. My neuro then

> prescribed Neurontin and I took it for about a year. It was very

> tolerable, but other than keeping the fasiculations minimized, I

> didn't feel it was helping my spasticity. We returned to baclofen at

> 10 mg, 3 times a day (much lower than original dosage) and I " believe "

> it's helpful. This lower dosage doesn't make my legs feel like

> " jello " which the neuro said was due to an " exaggerated " decrease in

> the spasticity, nor do I have that foggy-headed feeling.

> Now, almost 5 years after my " official " diagnosis, I find that my

> balance has worsened. I started out refusing to use a cane due to

> vanity and that " male ego " thing; started using one in Oct 200 after

> a bad fall. I progressed to a four wheeled walker in May 2001 (best

> thing I ever did so far re: PLS) and have remained " independent "

> because of it. I still drive and travel distances alone due to the

> use of the walker. To those newly diagnosed..........PLEASE use the

> cane or walker at the first sign of problems with balance. Put aside

> any vanity and do it. People will ask fewer annoying questions, e.g.,

> have you been drinking and you will be safer.

> PLS is an insidious and progressive condition, no one will dispute

> that. On Oct 2 I will be " fitted " for a powered wheelchair because it

> has become virtually impossible to walk around the mall or walk the

> campuses with my daughters at their universities. I refuse to stop

> living and as much as I hate the idea of having to use a wheelchair,

> if it's the means to keep me " active " and able to travel locally or

> otherwise, I'll put my rear end in the chair and GO!! Like many of

> us here, I also get fatigued easily and find myself " fighting' through

> it. Thanks to Mrs. Neff, I use NADH daily and it's been helpful to

> combat the fatigue. I also overdo it some days and have to " recover "

> the following day by doing much less. I also attend aquatherapy in a

> heated pool twice a week and this, I do believe, has been my " saving

> grace " . It's very helpful and is an excellent source of

> cardiovascular exercise; strengthening and an unbelievable assistance

> for the balance issue we all face with PLS.

> I apologize for being so lengthy. I just feel the need to share with

> the newest arrivals, because I, too once felt very alone with this

> condition until I found TR.'s website and subsequently,Mark

> Weber's PLS Friends listserver. As we're now seeing as a result of

> the so many efforts over the last year, there is strength in numbers.

> I must say the one thing I dread the most about PLS is the fact that I

> have progressively lost my ability to communicate as well as I once

> did. Because my tongue and soft palate are both affected, I do slur

> words and people who I meet have a difficult time hearing and/or

> understanding me. So, I speak more slowly and try to overcome. Hey, I

> don't give up! I have a follow up

> appointment with my speech pathologist tomorrow to " test " an assistive

> device that'll amplify my voice. I know it won't help with the

> clarity of my speech, but at least I can speak slowly and loud enough

> for folks to hear me. You should see me when I pull up to a Burger

> King drive thru window. I actually carry a small megaphone in my car,

> so the person at the drive thru can hear me when I order that

> chocolate shake!! LOL

> Sorry for the length. Just needed to share my experiences and hope

> that some of the information helps at least one person. It makes it

> all worthwhile.

> Regards,

> (DE)

> P.S. If you ever have the opportunity to attend a gathering of PLS

> folks and their caregivers, spouses, etc....GO!!! You will meet some

> wonderful people, learn so much and come away renewed and refreshed

> despite your own personal symptoms.

>

> Original Message -----

> From: frazerlindsay

> To: PLS-FRIENDS

> Sent: Sunday, September 22, 2002 3:26 PM

> Subject: PLS treatments

>

>

> A new member with a lot to do to catch up - which I hope to do soon.

> Only just diagnosed after three/four years of tests. Am trying

> massage, muscle toning in the gym and aquaaerobics, the latter seems

> so far to be most helpful.

>

> A question - has anyone tried, and found beneficial, treatment by

> acupuncture?

>

>

>

[Guest guest]

,

Since this is a reply to a reply, I'll keep it short. I have also found

water walking and a four wheeled walker to be extremely helpful.

Unfortunately, I use the pool infrequently because of lack of one. The

walker was 1st a loaner for 14 weeks, then I purchased my own. I have to

use 8 inch balloon type wheels to get around the grass and gravel

surrounding soccer fields and have found it easier to control The price

is just $11 more than one with 5 inch wheels. I am pleased to hear from

you and glad that you are going to keep up with your daughters. As you

probably know, a positive attitude is very important in keeping the

disease from owning you. I guess we have to confront this wacky disease

instead of letting it confront and control us. I'm 54, have had PLS

symptoms since 1994, possibly earlier. Got diagnosed in 1996 and

returned to work as a therapist at a large State Mental Hospital. I'm

lucky to be able to continue working, as so many others, like yourself,

have had to " retire. " Ms. Neff convinced me to try NADH, also, but it

didn't work after 3 months of trial. I'm now on CoQ10 and have noticed a

difference. I have also heard somewhere that a combination of the two is

tremendous. Wish I could afford to try.

Keep going and keep talking. And try not to have any more spinal taps.

Those headaches are nothing to sneeze with. It hurts!

Mike Gray

wrote:

> Greetings to all of the newly diagnosed folks! Seems like there's

> been quite a few over the past several months. I've been kinda quiet

> lately, but still reading everyday, twice a day. New arrivals have

> probably sensed by now that this is the place to be for PLS

> information, symptoms, cajoling, crying, support, etc. There's a

> lotta love here and it does help as we trudge along this path with so

> many working towards, hoping for and praying for a breakthrough and a

> cure. It will happen, hang in there.

> Just a few comments so the newest arrivals won't feel as though their

> m symptoms or attempts at relief from the various symptoms are unusual.

> I'm a 48 y/o, who diagnosed in January 1998, but had noticeable

> symptoms since approx 1994. I went through the myriad of tests to

> eliminate all other possibilities; had the dreaded spinal headache due

> to the lumbar puncture. What a memory!! Had the EMGs. As you can

> see, most of us have traveled this route at one time or the other.

> It's no fun, i.e., trying to find answers, but keep searching and

> visiting this site. You won't feel so alone.

> I medically retired in March 2001 after fighting the symptoms of lost

> of balance; loss of volume in my speech; running out of air in the

> middle of words; uncontrollable laughter; crying at the music of a

> Ford commercial; hyper reflex issues; problems with swallowing,

> choking on my own saliva, etc. I tried acupuncture with no results.

> Originally tried baclofen; it made me feel " stupid " and I couldn't add

> simple numbers. Went to Zanaflex and it put me to sleep within

> minutes. Both were probably at too high of a dosage. My neuro then

> prescribed Neurontin and I took it for about a year. It was very

> tolerable, but other than keeping the fasiculations minimized, I

> didn't feel it was helping my spasticity. We returned to baclofen at

> 10 mg, 3 times a day (much lower than original dosage) and I " believe "

> it's helpful. This lower dosage doesn't make my legs feel like

> " jello " which the neuro said was due to an " exaggerated " decrease in

> the spasticity, nor do I have that foggy-headed feeling.

> Now, almost 5 years after my " official " diagnosis, I find that my

> balance has worsened. I started out refusing to use a cane due to

> vanity and that " male ego " thing; started using one in Oct 200 after

> a bad fall. I progressed to a four wheeled walker in May 2001 (best

> thing I ever did so far re: PLS) and have remained " independent "

> because of it. I still drive and travel distances alone due to the

> use of the walker. To those newly diagnosed..........PLEASE use the

> cane or walker at the first sign of problems with balance. Put aside

> any vanity and do it. People will ask fewer annoying questions, e.g.,

> have you been drinking and you will be safer.

> PLS is an insidious and progressive condition, no one will dispute

> that. On Oct 2 I will be " fitted " for a powered wheelchair because it

> has become virtually impossible to walk around the mall or walk the

> campuses with my daughters at their universities. I refuse to stop

> living and as much as I hate the idea of having to use a wheelchair,

> if it's the means to keep me " active " and able to travel locally or

> otherwise, I'll put my rear end in the chair and GO!! Like many of

> us here, I also get fatigued easily and find myself " fighting' through

> it. Thanks to Mrs. Neff, I use NADH daily and it's been helpful to

> combat the fatigue. I also overdo it some days and have to " recover "

> the following day by doing much less. I also attend aquatherapy in a

> heated pool twice a week and this, I do believe, has been my " saving

> grace " . It's very helpful and is an excellent source of

> cardiovascular exercise; strengthening and an unbelievable assistance

> for the balance issue we all face with PLS.

> I apologize for being so lengthy. I just feel the need to share with

> the newest arrivals, because I, too once felt very alone with this

> condition until I found TR.'s website and subsequently,Mark

> Weber's PLS Friends listserver. As we're now seeing as a result of

> the so many efforts over the last year, there is strength in numbers.

> I must say the one thing I dread the most about PLS is the fact that I

> have progressively lost my ability to communicate as well as I once

> did. Because my tongue and soft palate are both affected, I do slur

> words and people who I meet have a difficult time hearing and/or

> understanding me. So, I speak more slowly and try to overcome. Hey, I

> don't give up! I have a follow up

> appointment with my speech pathologist tomorrow to " test " an assistive

> device that'll amplify my voice. I know it won't help with the

> clarity of my speech, but at least I can speak slowly and loud enough

> for folks to hear me. You should see me when I pull up to a Burger

> King drive thru window. I actually carry a small megaphone in my car,

> so the person at the drive thru can hear me when I order that

> chocolate shake!! LOL

> Sorry for the length. Just needed to share my experiences and hope

> that some of the information helps at least one person. It makes it

> all worthwhile.

> Regards,

> (DE)

> P.S. If you ever have the opportunity to attend a gathering of PLS

> folks and their caregivers, spouses, etc....GO!!! You will meet some

> wonderful people, learn so much and come away renewed and refreshed

> despite your own personal symptoms.

>

> Original Message -----

> From: frazerlindsay

> To: PLS-FRIENDS

> Sent: Sunday, September 22, 2002 3:26 PM

> Subject: PLS treatments

>

>

> A new member with a lot to do to catch up - which I hope to do soon.

> Only just diagnosed after three/four years of tests. Am trying

> massage, muscle toning in the gym and aquaaerobics, the latter seems

> so far to be most helpful.

>

> A question - has anyone tried, and found beneficial, treatment by

> acupuncture?

>

>

>