Re: Another newcomer!

[Guest guest]

Hello Jo,

Welcome aboard sorry you had to come aboard but if you have PLS this is

the place to be these people are all so smart and all so kind as you will see

in the days to come. Just watch that Rita and that . They will keep you

in stitches. Sorry guys just had to put that in. : )) So very nice to meet

you. Shirley (Michigan)

[Guest guest]

Welcome to the group, Jo. I live in Connecticut and am your age. My onset

of symptoms was in 1986 or so, with heat intolerance, leg stiffness and

balance problems. In 1987, I experience right foot drop--that would come

and go with rest and cooling down. It took me almost 10 years to be

diagnosed. Things have progressed so I went from " wall walking " to a cane,

then a walker, and now am in the process of getting a scooter because my

distances are so limited. I am a Registered Dietitian and worked in a large

medical center for 30 years. I left work in May 1995.

You will find this group to be a wonderful source of information and

inspiration. We have touched on all topics from soup to nuts--nothing is

off limits or too personal. Everyone is willing to share experience and

offer advice. That is necessary with such a rare disease and so little

information available, elsewhere.

Dolores

Another newcomer!

> First off I would like to introduce myself:

>

> NAME: Joanne AGE: 59 Resident of Northern Ontario

>

> I was recently diagnosed with PLS this past May (3 days before my Son's

wedding) and I have to say that even though it wasn't the best news, I was

glad to finally have a name to what was happening to me.

>

> A year ago this past January I had surgery for spinal stenosis which was

strangling the spinal chord and they suspected this was causing my leg and

left hand problems. The doctor in Toronto said he couldn't fix what damage

had been done but he could halt the progress of the severe spastisity I was

experiencing. I had a fusion done on C3-4-5 & 6 and everything went well

although it was a long recuperation period. I started therapy and am sad to

say things just kept getting worse. On my return visit to Toronto my

Neuro-surgeon referred me to the MS Clinic as he said there was definitely

something going on to cause this progression. To make a long story short -

a group of Neurologists gave me a diagnosis of PLS.

>

> I am a very positive person and am taking the attitude " make hay while the

sun shines " .

>

> I have graduated to a walker now (after several falls) and am finding it

easier to get around than unsteadily using my cane.

>

> My Mom is 84 and has severe emphasyma and pulmonary disease and is still

living in her own home. I am still able to make up her dinners and freeze

them so she just has to heat them in the microwave. This disease sure has

lousy timing as I want to be there for my Mom and I am no longer able to

help out the way I used to. (I forgot to mention that I am an only child so

I am all she has.)

>

> I have tried Baclofen and Zanaflex but am hyper-sensative to them so I am

trying natural products being Magnesium. Haven't seen any great results but

will continue awhile longer to see if I notice any improvement. I also have

fasciculations in the upper and lower extremities and get charlie-horses in

my calfs something fierce when I stretch out in the morning.

>

> There is one really weird thing that happens to me and that is when I

laugh (which I like to do a lot) my hands become very weak and I can't even

hold a small glass or tear open a sugar packet. Has anyone else ever

experienced this?????????????

>

> I have two wonderful children: Tammy - 39 and Rob - 33. They are both

married and my daughter and her husband have blessed me with two

granddaughters: - 8 and - 6. My daughter lives in Marathon

and my son in Toronto.

>

> I have probably bored you enough but I do want to say how wonderful it is

to finally find a support group. My heart goes out to you - you are

a definite inspiration to this group with your strength and determination.

You will be in my thoughts.

>

> Thank you for reading my story and I will look forward to hearing from any

of you and answering any questions you may have.

>

> Take care

>

> Your new pal: Jo!

>

>

>

[Guest guest]

Welcome to the group, Jo. I live in Connecticut and am your age. My onset

of symptoms was in 1986 or so, with heat intolerance, leg stiffness and

balance problems. In 1987, I experience right foot drop--that would come

and go with rest and cooling down. It took me almost 10 years to be

diagnosed. Things have progressed so I went from " wall walking " to a cane,

then a walker, and now am in the process of getting a scooter because my

distances are so limited. I am a Registered Dietitian and worked in a large

medical center for 30 years. I left work in May 1995.

You will find this group to be a wonderful source of information and

inspiration. We have touched on all topics from soup to nuts--nothing is

off limits or too personal. Everyone is willing to share experience and

offer advice. That is necessary with such a rare disease and so little

information available, elsewhere.

Dolores

Another newcomer!

> First off I would like to introduce myself:

>

> NAME: Joanne AGE: 59 Resident of Northern Ontario

>

> I was recently diagnosed with PLS this past May (3 days before my Son's

wedding) and I have to say that even though it wasn't the best news, I was

glad to finally have a name to what was happening to me.

>

> A year ago this past January I had surgery for spinal stenosis which was

strangling the spinal chord and they suspected this was causing my leg and

left hand problems. The doctor in Toronto said he couldn't fix what damage

had been done but he could halt the progress of the severe spastisity I was

experiencing. I had a fusion done on C3-4-5 & 6 and everything went well

although it was a long recuperation period. I started therapy and am sad to

say things just kept getting worse. On my return visit to Toronto my

Neuro-surgeon referred me to the MS Clinic as he said there was definitely

something going on to cause this progression. To make a long story short -

a group of Neurologists gave me a diagnosis of PLS.

>

> I am a very positive person and am taking the attitude " make hay while the

sun shines " .

>

> I have graduated to a walker now (after several falls) and am finding it

easier to get around than unsteadily using my cane.

>

> My Mom is 84 and has severe emphasyma and pulmonary disease and is still

living in her own home. I am still able to make up her dinners and freeze

them so she just has to heat them in the microwave. This disease sure has

lousy timing as I want to be there for my Mom and I am no longer able to

help out the way I used to. (I forgot to mention that I am an only child so

I am all she has.)

>

> I have tried Baclofen and Zanaflex but am hyper-sensative to them so I am

trying natural products being Magnesium. Haven't seen any great results but

will continue awhile longer to see if I notice any improvement. I also have

fasciculations in the upper and lower extremities and get charlie-horses in

my calfs something fierce when I stretch out in the morning.

>

> There is one really weird thing that happens to me and that is when I

laugh (which I like to do a lot) my hands become very weak and I can't even

hold a small glass or tear open a sugar packet. Has anyone else ever

experienced this?????????????

>

> I have two wonderful children: Tammy - 39 and Rob - 33. They are both

married and my daughter and her husband have blessed me with two

granddaughters: - 8 and - 6. My daughter lives in Marathon

and my son in Toronto.

>

> I have probably bored you enough but I do want to say how wonderful it is

to finally find a support group. My heart goes out to you - you are

a definite inspiration to this group with your strength and determination.

You will be in my thoughts.

>

> Thank you for reading my story and I will look forward to hearing from any

of you and answering any questions you may have.

>

> Take care

>

> Your new pal: Jo!

>

>

>

[Guest guest]

Welcome to the group, Jo. Pull up a chair and settle in, the people here are

wonderful.

I have been dx. with PLS for about a year, before that they thought I had

MS. I also had a fusion done on my C3 and C4 for the same reason, didn't

help. I do how hard the recuperation period is and it seemed to take forever

to get better. I live in Edmonton, Alberta, have one daughter and one son.

Gloria

Another newcomer!

> First off I would like to introduce myself:

>

> NAME: Joanne AGE: 59 Resident of Northern Ontario

>

> I was recently diagnosed with PLS this past May (3 days before my Son's

wedding) and I have to say that even though it wasn't the best news, I was

glad to finally have a name to what was happening to me.

>

> A year ago this past January I had surgery for spinal stenosis which was

strangling the spinal chord and they suspected this was causing my leg and

left hand problems. The doctor in Toronto said he couldn't fix what damage

had been done but he could halt the progress of the severe spastisity I was

experiencing. I had a fusion done on C3-4-5 & 6 and everything went well

although it was a long recuperation period. I started therapy and am sad to

say things just kept getting worse. On my return visit to Toronto my

Neuro-surgeon referred me to the MS Clinic as he said there was definitely

something going on to cause this progression. To make a long story short -

a group of Neurologists gave me a diagnosis of PLS.

>

> I am a very positive person and am taking the attitude " make hay while the

sun shines " .

>

> I have graduated to a walker now (after several falls) and am finding it

easier to get around than unsteadily using my cane.

>

> My Mom is 84 and has severe emphasyma and pulmonary disease and is still

living in her own home. I am still able to make up her dinners and freeze

them so she just has to heat them in the microwave. This disease sure has

lousy timing as I want to be there for my Mom and I am no longer able to

help out the way I used to. (I forgot to mention that I am an only child so

I am all she has.)

>

> I have tried Baclofen and Zanaflex but am hyper-sensative to them so I am

trying natural products being Magnesium. Haven't seen any great results but

will continue awhile longer to see if I notice any improvement. I also have

fasciculations in the upper and lower extremities and get charlie-horses in

my calfs something fierce when I stretch out in the morning.

>

> There is one really weird thing that happens to me and that is when I

laugh (which I like to do a lot) my hands become very weak and I can't even

hold a small glass or tear open a sugar packet. Has anyone else ever

experienced this?????????????

>

> I have two wonderful children: Tammy - 39 and Rob - 33. They are both

married and my daughter and her husband have blessed me with two

granddaughters: - 8 and - 6. My daughter lives in Marathon

and my son in Toronto.

>

> I have probably bored you enough but I do want to say how wonderful it is

to finally find a support group. My heart goes out to you - you are

a definite inspiration to this group with your strength and determination.

You will be in my thoughts.

>

> Thank you for reading my story and I will look forward to hearing from any

of you and answering any questions you may have.

>

> Take care

>

> Your new pal: Jo!

>

>

>

[Guest guest]

Jo, Well to the group you will find this group of people are in many stages

of PLS. Some are affected worse then others but we are still stuck with this

ugly disease. You old timers have heard my story before so delete this part

of the message. I am 56, married for 33 years have one child 29 and have had

this for 7 years but my voice was affected in l991. My vocal cords were

being squeezed together straining my voice which made it difficult to talk

and be understood. I began Botox shot into my vocal cords. This was a

blessing because it made my vocal cords relax and I was able to talk more

clearly. Many in this group have the opposite their vocal cords are relaxed

already to much so. So botox would not help them. I'm seem to be the only

odd duck. Not until 1995 I did not have any other symptoms. I had a fall at

home I was walking to fast on our tile floors (I had my knee highs 0n) and

fell and broke my left wrist. It was a bad break I had three different casts

on and one reset. During my physical therapy I started to drag my right foot

and tripped a lot. I started to fall backwards and sometimes could not catch

my self. I went to my neurologist who put me through a battery of tests for

the next six months. I even had a (he called it a hot spot on my brain) spot

on my brain he sent me to a brain surgeon he thought it could be a tumor. So

for the next year they had me go in for a MRI every three months and after

two years since it hadn't grown it wasn't a tumor. They final decided it was

a group of blood vessels that had grouped together. So it was a long

progress for the PLS diagnosis. My neurologist has said that I have leveled

off now not any worse but not any better. I have surprised them all because

I still have strength no muscle waste but I have spasticity in my right leg

and terrible balance. I use a four wheel walker and use an electric scooter

for long trips. I still do most things around the house but do get tried. I

have fasciculation in bother upper & lower body and get an occasional cramp

every now and then but I just start walking and it goes away. I also have

hyper reflexes. Having a good attitude and avoiding STRESS (I'm shouting) is

my key to coping with this STUFF I have. Well, I do go on so I'll end my

story. Glad you found us don't be afraid to ask us questions........

Flora Brand

St. sburg, Florida

[Guest guest]

Hi JoJo,

Welcome to the best support group on the internet, than none of

us wanted to belong to. However, we're all pretty darn glad we

found it. I'm very sorry about your diagnosis, but it does sound

like you've come to grips with it. I have a really good friend who

lives in Red Lake, Ontario. Are you more North?

I am 54, diagnosed in 9/99, after also thinking it was my back that

was causing my neurological symptoms.

I am very fortunate to have stabilized so far, and am still just mildly

affected by PLS. I walk without aid, although slowly, stiffly, and

dragging my toes a little bit. My worst symptom is the fatigue.

I tend to over-do-it at times, then suffer for a few days.

I have tried Baclafen with no results, and do not take any prescriptions

for my symptoms. I have tried Lecithin, Magnesium, CoQ10, Sam-E,

NADA, and several other supplements in hopes of having stronger

legs, and more energy, but nothing makes a difference.

I just try get plenty of rest, sit when I have to, and not do too much.

Welcome, stick around, and ask away when you have questions.

We're a fantastic group of people, even though we get a little snarly

once in awhile.

Blessings,

Laurel

Another newcomer!

First off I would like to introduce myself:

NAME: Joanne AGE: 59 Resident of Northern Ontario

I was recently diagnosed with PLS this past May (3 days before my Son's

wedding) and I have to say that even though it wasn't the best news, I was glad

to finally have a name to what was happening to me.

A year ago this past January I had surgery for spinal stenosis which was

strangling the spinal chord and they suspected this was causing my leg and left

hand problems. The doctor in Toronto said he couldn't fix what damage had been

done but he could halt the progress of the severe spastisity I was experiencing.

I had a fusion done on C3-4-5 & 6 and everything went well although it was a

long recuperation period. I started therapy and am sad to say things just kept

getting worse. On my return visit to Toronto my Neuro-surgeon referred me to

the MS Clinic as he said there was definitely something going on to cause this

progression. To make a long story short - a group of Neurologists gave me a

diagnosis of PLS.

I am a very positive person and am taking the attitude " make hay while the sun

shines " .

I have graduated to a walker now (after several falls) and am finding it

easier to get around than unsteadily using my cane.

My Mom is 84 and has severe emphasyma and pulmonary disease and is still

living in her own home. I am still able to make up her dinners and freeze them

so she just has to heat them in the microwave. This disease sure has lousy

timing as I want to be there for my Mom and I am no longer able to help out the

way I used to. (I forgot to mention that I am an only child so I am all she

has.)

I have tried Baclofen and Zanaflex but am hyper-sensative to them so I am

trying natural products being Magnesium. Haven't seen any great results but

will continue awhile longer to see if I notice any improvement. I also have

fasciculations in the upper and lower extremities and get charlie-horses in my

calfs something fierce when I stretch out in the morning.

There is one really weird thing that happens to me and that is when I laugh

(which I like to do a lot) my hands become very weak and I can't even hold a

small glass or tear open a sugar packet. Has anyone else ever experienced

this?????????????

I have two wonderful children: Tammy - 39 and Rob - 33. They are both

married and my daughter and her husband have blessed me with two granddaughters:

- 8 and - 6. My daughter lives in Marathon and my son in Toronto.

I have probably bored you enough but I do want to say how wonderful it is to

finally find a support group. My heart goes out to you - you are a

definite inspiration to this group with your strength and determination. You

will be in my thoughts.

Thank you for reading my story and I will look forward to hearing from any of

you and answering any questions you may have.

Take care

Your new pal: Jo!

[Guest guest]

Thats ok Shirley, we all have a purpose in life, and to be hooked up

with my dear friend C is ok with me? How about you C?

I want to share this mornings experience with all of you. As most od

you know I am in the process of obtaining a power chair as my PLS is

starting to progress and the falls are coming fast and furious. Well I

went to the medical supply store this past Friday and " got fitted " (good

thing they don't make you pay by your size I would be in deep trouble).

Well they checked my insurances and I was told the chair was going to be

paid 100%. I felt very good about that.

This is what happened this AM:

Medical Supply Store call me and told them that my supplemental cover

would NOT cover the 20% not covered by Medicare. Needless to say I was

really upset.

So I called them to ask why they had changed their minds. The man

talked said that there was coverage 100%. I told him what the medical

store was told, and he said " not true " .

So I called the store back, and the gave me the same story " no

coverage " , but the would call the insurance company again.

So I call the insurance company again, and was told once again the

coverage was defiantly there. I asked them to please call the medical

supply store and tell them that. She put me on hold, called them and

verified that I did have the coverage.

Then I got a call from the store saying everything was OK, and the

coverage was there.

I asked the insurance company who was this " Shiela " who said I didn't

have the coverage. I was told she was just a customer service rep who

didn't look at the whole picture. And they did apologize to me me for

the whole chain of events.

So the bottom line is you have to fight for your rights, and don't sit

back and take " no " for an answer. Oh I forgot to tell you, I was in

insurance for 20 years, so I sorta had the edge. Have a great week.

Rita

Luv & Hugs!

*************************************

Some people succeed in spite of their handicap. Others succeed because

of them.

Lord Keep Your Arm Around My Shoulder And Your Hand Over My Mouth

*************************************

[Guest guest]

GOOD FOR YOU RITA!!! :-)

& THANKS FOR YOUR SUPPORT.

BONNIE

Re: Another newcomer!

> Thats ok Shirley, we all have a purpose in life, and to be hooked up

> with my dear friend C is ok with me? How about you C?

>

> I want to share this mornings experience with all of you. As most od

> you know I am in the process of obtaining a power chair as my PLS is

> starting to progress and the falls are coming fast and furious. Well I

> went to the medical supply store this past Friday and " got fitted " (good

> thing they don't make you pay by your size I would be in deep trouble).

> Well they checked my insurances and I was told the chair was going to be

> paid 100%. I felt very good about that.

>

> This is what happened this AM:

>

> Medical Supply Store call me and told them that my supplemental cover

> would NOT cover the 20% not covered by Medicare. Needless to say I was

> really upset.

>

> So I called them to ask why they had changed their minds. The man

> talked said that there was coverage 100%. I told him what the medical

> store was told, and he said " not true " .

>

> So I called the store back, and the gave me the same story " no

> coverage " , but the would call the insurance company again.

>

> So I call the insurance company again, and was told once again the

> coverage was defiantly there. I asked them to please call the medical

> supply store and tell them that. She put me on hold, called them and

> verified that I did have the coverage.

>

> Then I got a call from the store saying everything was OK, and the

> coverage was there.

>

> I asked the insurance company who was this " Shiela " who said I didn't

> have the coverage. I was told she was just a customer service rep who

> didn't look at the whole picture. And they did apologize to me me for

> the whole chain of events.

>

> So the bottom line is you have to fight for your rights, and don't sit

> back and take " no " for an answer. Oh I forgot to tell you, I was in

> insurance for 20 years, so I sorta had the edge. Have a great week.

>

> Rita

>

> Luv & Hugs!

>

>

>

>

> *************************************

> Some people succeed in spite of their handicap. Others succeed because

> of them.

>

>

> Lord Keep Your Arm Around My Shoulder And Your Hand Over My Mouth

> *************************************

>

>

>

>

>

>

[Guest guest]

GOOD FOR YOU RITA!!! :-)

& THANKS FOR YOUR SUPPORT.

BONNIE

Re: Another newcomer!

> Thats ok Shirley, we all have a purpose in life, and to be hooked up

> with my dear friend C is ok with me? How about you C?

>

> I want to share this mornings experience with all of you. As most od

> you know I am in the process of obtaining a power chair as my PLS is

> starting to progress and the falls are coming fast and furious. Well I

> went to the medical supply store this past Friday and " got fitted " (good

> thing they don't make you pay by your size I would be in deep trouble).

> Well they checked my insurances and I was told the chair was going to be

> paid 100%. I felt very good about that.

>

> This is what happened this AM:

>

> Medical Supply Store call me and told them that my supplemental cover

> would NOT cover the 20% not covered by Medicare. Needless to say I was

> really upset.

>

> So I called them to ask why they had changed their minds. The man

> talked said that there was coverage 100%. I told him what the medical

> store was told, and he said " not true " .

>

> So I called the store back, and the gave me the same story " no

> coverage " , but the would call the insurance company again.

>

> So I call the insurance company again, and was told once again the

> coverage was defiantly there. I asked them to please call the medical

> supply store and tell them that. She put me on hold, called them and

> verified that I did have the coverage.

>

> Then I got a call from the store saying everything was OK, and the

> coverage was there.

>

> I asked the insurance company who was this " Shiela " who said I didn't

> have the coverage. I was told she was just a customer service rep who

> didn't look at the whole picture. And they did apologize to me me for

> the whole chain of events.

>

> So the bottom line is you have to fight for your rights, and don't sit

> back and take " no " for an answer. Oh I forgot to tell you, I was in

> insurance for 20 years, so I sorta had the edge. Have a great week.

>

> Rita

>

> Luv & Hugs!

>

>

>

>

> *************************************

> Some people succeed in spite of their handicap. Others succeed because

> of them.

>

>

> Lord Keep Your Arm Around My Shoulder And Your Hand Over My Mouth

> *************************************

>

>

>

>

>

>

[Guest guest]

Flora:

You should have d the words I used is morning. Thanks, now if I can

think of a way to find and finace a van, that would be great. Wished I

had a rich uncle who adored me. Any body want to adopt me?

Rita

Luv & Hugs!

*************************************

Some people succeed in spite of their handicap. Others succeed because

of them.

Lord Keep Your Arm Around My Shoulder And Your Hand Over My Mouth

*************************************

[Guest guest]

Flora:

You should have d the words I used is morning. Thanks, now if I can

think of a way to find and finace a van, that would be great. Wished I

had a rich uncle who adored me. Any body want to adopt me?

Rita

Luv & Hugs!

*************************************

Some people succeed in spite of their handicap. Others succeed because

of them.

Lord Keep Your Arm Around My Shoulder And Your Hand Over My Mouth

*************************************

[Guest guest]

Flora:

You should have d the words I used is morning. Thanks, now if I can

think of a way to find and finace a van, that would be great. Wished I

had a rich uncle who adored me. Any body want to adopt me?

Rita

Luv & Hugs!

*************************************

Some people succeed in spite of their handicap. Others succeed because

of them.

Lord Keep Your Arm Around My Shoulder And Your Hand Over My Mouth

*************************************

[Guest guest]

Rita,I'm with you! Good luck with your powerchair.Are you buying a van?

C.

[Guest guest]

Rita,I'm with you! Good luck with your powerchair.Are you buying a van?

C.

[Guest guest]

Rita,I'm with you! Good luck with your powerchair.Are you buying a van?

C.

[Guest guest]

Rita, I have a friend who owes a used car lot. He always goes to those

auctions to buy his cars. There must be one of those auctions up where you

live. Why not ask a local used car dealer that you know or have done

business with and let him look for you just maybe he might run into

something. Just a thought.............Flora

[Guest guest]

Rita, I have a friend who owes a used car lot. He always goes to those

auctions to buy his cars. There must be one of those auctions up where you

live. Why not ask a local used car dealer that you know or have done

business with and let him look for you just maybe he might run into

something. Just a thought.............Flora

[Guest guest]

Rita, I have a friend who owes a used car lot. He always goes to those

auctions to buy his cars. There must be one of those auctions up where you

live. Why not ask a local used car dealer that you know or have done

business with and let him look for you just maybe he might run into

something. Just a thought.............Flora

[Guest guest]

C:

We are trying to find one we can afford, boy are they expensive.

Rita

Luv & Hugs!

*************************************

Some people succeed in spite of their handicap. Others succeed because

of them.

Lord Keep Your Arm Around My Shoulder And Your Hand Over My Mouth

*************************************

[Guest guest]

Thanks Flora, I will look into that.

Rita

Luv & Hugs!

*************************************

Some people succeed in spite of their handicap. Others succeed because

of them.

Lord Keep Your Arm Around My Shoulder And Your Hand Over My Mouth

*************************************

[Guest guest]

Rita,

If you call your MS society, they may have some leads. They publish a

little classified in their newsletter.

Dolores

Re: Another newcomer!

> Rita, I have a friend who owes a used car lot. He always goes to those

> auctions to buy his cars. There must be one of those auctions up where

you

> live. Why not ask a local used car dealer that you know or have done

> business with and let him look for you just maybe he might run into

> something. Just a thought.............Flora

>

>

>

[Guest guest]

Rita,

If you call your MS society, they may have some leads. They publish a

little classified in their newsletter.

Dolores

Re: Another newcomer!

> Rita, I have a friend who owes a used car lot. He always goes to those

> auctions to buy his cars. There must be one of those auctions up where

you

> live. Why not ask a local used car dealer that you know or have done

> business with and let him look for you just maybe he might run into

> something. Just a thought.............Flora

>

>

>

[Guest guest]

Jo, Bill & :

Welcome to you all, I'm a relative newcomer as well and was diagnosed for

about 2 yrs. before stumbling upon this group...it's proven an incredible

help.

I started having symptoms at age 39 after two falls that fractured my

tailbone each time within weeks of each other, the falls were a result of

slipping on ice and not lack of balance, etc. I slowly started having

symptoms after that caused difficulty walking so all the specialists who

were doing testing on me at first thought my symptoms were as a result of

the falls. After ruling out brain tumors and stroke and also after just

about every test imaginable, about two years+ later I finally got a

diagnosis of PLS. I'm a single mom of two teens so this tended to make the

whole process that much scarier as I was deeply frightened by the fact that

I may have something terminal that would leave my children on their own, so

the diagnosis of PLS came as somewhat of a relief. As one of my

neurologist's once told me, " if you had to end up with an upper motor neuron

condition, this is the best one out of them all! " I had been quite

pysically active prior to the onset so dealing with that change was very

difficult. I started to use a cane shortly after the symptoms started,

graduated to a 4-wheeled walker about 1 year later and have now just gotten

a power chair and am trying to " learn " how to use it. My speech has

recently been affected within the past 8 months or so.

:

I live just east of Ottawa so am just around the corner from you, I'm

guessing we likely share some of the same neuros/specialists depending where

in the city you are. You sound very knowledgeable on this condition, much

more so than I am so I'm sure I'll learn alot from you! I'm glad to hear

you have such a great support system of friends and family.

Jo:

I like your idea of " making hay while the sun shines " . Also living in

Ontario, I know how much our winters can affect my spasticity and try to

take advantage of the summer to get out as much as possible. I'm interested

in your use of magnesium, if you have a chance can you tell me more?

Bill:

In spite of your lack of a diagnosis, I hope you continue to share with us,

there's such a wealth of information shared here that I think anyone with

any type of UMN condition can benefit from it.

Blessings to each of you & take care for now.

Jen L.

_________________________________________________________________

Send and receive Hotmail on your mobile device: http://mobile.msn.com

[Guest guest]

Jo, Bill & :

Welcome to you all, I'm a relative newcomer as well and was diagnosed for

about 2 yrs. before stumbling upon this group...it's proven an incredible

help.

I started having symptoms at age 39 after two falls that fractured my

tailbone each time within weeks of each other, the falls were a result of

slipping on ice and not lack of balance, etc. I slowly started having

symptoms after that caused difficulty walking so all the specialists who

were doing testing on me at first thought my symptoms were as a result of

the falls. After ruling out brain tumors and stroke and also after just

about every test imaginable, about two years+ later I finally got a

diagnosis of PLS. I'm a single mom of two teens so this tended to make the

whole process that much scarier as I was deeply frightened by the fact that

I may have something terminal that would leave my children on their own, so

the diagnosis of PLS came as somewhat of a relief. As one of my

neurologist's once told me, " if you had to end up with an upper motor neuron

condition, this is the best one out of them all! " I had been quite

pysically active prior to the onset so dealing with that change was very

difficult. I started to use a cane shortly after the symptoms started,

graduated to a 4-wheeled walker about 1 year later and have now just gotten

a power chair and am trying to " learn " how to use it. My speech has

recently been affected within the past 8 months or so.

:

I live just east of Ottawa so am just around the corner from you, I'm

guessing we likely share some of the same neuros/specialists depending where

in the city you are. You sound very knowledgeable on this condition, much

more so than I am so I'm sure I'll learn alot from you! I'm glad to hear

you have such a great support system of friends and family.

Jo:

I like your idea of " making hay while the sun shines " . Also living in

Ontario, I know how much our winters can affect my spasticity and try to

take advantage of the summer to get out as much as possible. I'm interested

in your use of magnesium, if you have a chance can you tell me more?

Bill:

In spite of your lack of a diagnosis, I hope you continue to share with us,

there's such a wealth of information shared here that I think anyone with

any type of UMN condition can benefit from it.

Blessings to each of you & take care for now.

Jen L.

_________________________________________________________________

Send and receive Hotmail on your mobile device: http://mobile.msn.com

[Guest guest]

Jo, Bill & :

Welcome to you all, I'm a relative newcomer as well and was diagnosed for

about 2 yrs. before stumbling upon this group...it's proven an incredible

help.

I started having symptoms at age 39 after two falls that fractured my

tailbone each time within weeks of each other, the falls were a result of

slipping on ice and not lack of balance, etc. I slowly started having

symptoms after that caused difficulty walking so all the specialists who

were doing testing on me at first thought my symptoms were as a result of

the falls. After ruling out brain tumors and stroke and also after just

about every test imaginable, about two years+ later I finally got a

diagnosis of PLS. I'm a single mom of two teens so this tended to make the

whole process that much scarier as I was deeply frightened by the fact that

I may have something terminal that would leave my children on their own, so

the diagnosis of PLS came as somewhat of a relief. As one of my

neurologist's once told me, " if you had to end up with an upper motor neuron

condition, this is the best one out of them all! " I had been quite

pysically active prior to the onset so dealing with that change was very

difficult. I started to use a cane shortly after the symptoms started,

graduated to a 4-wheeled walker about 1 year later and have now just gotten

a power chair and am trying to " learn " how to use it. My speech has

recently been affected within the past 8 months or so.

:

I live just east of Ottawa so am just around the corner from you, I'm

guessing we likely share some of the same neuros/specialists depending where

in the city you are. You sound very knowledgeable on this condition, much

more so than I am so I'm sure I'll learn alot from you! I'm glad to hear

you have such a great support system of friends and family.

Jo:

I like your idea of " making hay while the sun shines " . Also living in

Ontario, I know how much our winters can affect my spasticity and try to

take advantage of the summer to get out as much as possible. I'm interested

in your use of magnesium, if you have a chance can you tell me more?

Bill:

In spite of your lack of a diagnosis, I hope you continue to share with us,

there's such a wealth of information shared here that I think anyone with

any type of UMN condition can benefit from it.

Blessings to each of you & take care for now.

Jen L.

_________________________________________________________________

Send and receive Hotmail on your mobile device: http://mobile.msn.com