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Re: Fwd: A Parent's Wish

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Ron, this is beautiful. I do hope that everyone clicks on the link, and listens to the music--

So my friend, how are you doing?

With love,

Tracie

NS Co-owner/moderatorSee what's new at AOL.com and Make AOL Your Homepage.

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Ron, this is beautiful. I do hope that everyone clicks on the link, and listens to the music--

So my friend, how are you doing?

With love,

Tracie

NS Co-owner/moderatorSee what's new at AOL.com and Make AOL Your Homepage.

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I have no idea what the music sounds like but I did enjoy everything else. I am not what I consider a senior citizen, but my disability fell in line with everything I read and my relationship with my Mom who is a senior citizen. So it was an eye opening experience for me. I hope some of the other members can benefit and relate to it as well.

As for me, I continue to do the same. What about you, how are you doing?

Take care of yourself and please tell Kim I asked about her.

Warm regards,

See what's new at AOL.com and Make AOL Your Homepage.

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I have no idea what the music sounds like but I did enjoy everything else. I am not what I consider a senior citizen, but my disability fell in line with everything I read and my relationship with my Mom who is a senior citizen. So it was an eye opening experience for me. I hope some of the other members can benefit and relate to it as well.

As for me, I continue to do the same. What about you, how are you doing?

Take care of yourself and please tell Kim I asked about her.

Warm regards,

See what's new at AOL.com and Make AOL Your Homepage.

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Ron, as for me, I too am the "same." I spent today in Sacramento, just got home after 13 hrs, a brain MRI and EEG. Too long a day..

I have been having signs of neuro stuff, facial palsy, leg weakness, balance issues-- so wanted to address these. I'll call tomorrow so he can call me w the results next week.

We've upped my Remicade to the maximum dose-- and that I have scheduled for tomorrow, but I need to go to the Chronic Pain Support Group mtg, and so I may reschedule for Thurs. when I need to be at a Spiritual Growth group mtg. I have a feeling that this week is going to be one of those that takes me 2 weeks to recover from.

Priorities, and patience-- what a concept....

Love to you,

TracieSee what's new at AOL.com and Make AOL Your Homepage.

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Ron, as for me, I too am the "same." I spent today in Sacramento, just got home after 13 hrs, a brain MRI and EEG. Too long a day..

I have been having signs of neuro stuff, facial palsy, leg weakness, balance issues-- so wanted to address these. I'll call tomorrow so he can call me w the results next week.

We've upped my Remicade to the maximum dose-- and that I have scheduled for tomorrow, but I need to go to the Chronic Pain Support Group mtg, and so I may reschedule for Thurs. when I need to be at a Spiritual Growth group mtg. I have a feeling that this week is going to be one of those that takes me 2 weeks to recover from.

Priorities, and patience-- what a concept....

Love to you,

TracieSee what's new at AOL.com and Make AOL Your Homepage.

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Ron, thanks for sending this; it's beautiful.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22Boo! Scare away worms, viruses and so much more! Try Windows Live OneCare! Try now!

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Ron, thanks for sending this; it's beautiful.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22Boo! Scare away worms, viruses and so much more! Try Windows Live OneCare! Try now!

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Tracie, I’m

sorry to hear you are having more problems therefore more tests. My

doctor that has been working with my insurance to get me on at least Humeria,

had to leave town on a family emergency, so that’s on hold. I have an

O.T. appt, tomorrow, has anyone tried O.T. and found it helpful?? I’ve

had a couple of bad days and told the nurse at my pulomologists but since he

was out of town she refereed me to the Neuro I saw, that was Monday, here it is

the end of Thursday and they still have not called me back, I guess I could lay

down and die and they wouldn’t care, what did you say, “priorities and

patience’s”

I am

having a lot of trouble with weakness in both legs now, left worse and balance

too.

My biggest

fear is that all this time waiting for different medication may end up to late,

and ??

It is

much harder to reverse symptoms then it is to treat them, why are we the only

ones that can see that, even my husband who means well, but when he says just

relax, I want to explode instead, oh well I will get by. Hope you get the

treatment you need Tracie, Marla

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of tiodaat@...

Sent: Tuesday, November 06, 2007

9:37 PM

To: Neurosarcoidosis

Subject: Re:

Re: Fwd: A Parent's Wish

Ron, as for me, I too

am the " same. " I spent today in Sacramento, just got home after 13 hrs, a

brain MRI and EEG. Too long a day..

I have been having

signs of neuro stuff, facial palsy, leg weakness, balance issues-- so wanted to

address these. I'll call tomorrow so he can call me w the results next

week.

We've upped my

Remicade to the maximum dose-- and that I have scheduled for tomorrow, but I

need to go to the Chronic Pain Support Group mtg, and so I may reschedule

for Thurs. when I need to be at a Spiritual Growth group mtg. I

have a feeling that this week is going to be one of those that takes me 2 weeks

to recover from.

Priorities, and

patience-- what a concept....

Love to you,

Tracie

See what's new at AOL.com and Make AOL Your

Homepage.

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Tracie, I’m

sorry to hear you are having more problems therefore more tests. My

doctor that has been working with my insurance to get me on at least Humeria,

had to leave town on a family emergency, so that’s on hold. I have an

O.T. appt, tomorrow, has anyone tried O.T. and found it helpful?? I’ve

had a couple of bad days and told the nurse at my pulomologists but since he

was out of town she refereed me to the Neuro I saw, that was Monday, here it is

the end of Thursday and they still have not called me back, I guess I could lay

down and die and they wouldn’t care, what did you say, “priorities and

patience’s”

I am

having a lot of trouble with weakness in both legs now, left worse and balance

too.

My biggest

fear is that all this time waiting for different medication may end up to late,

and ??

It is

much harder to reverse symptoms then it is to treat them, why are we the only

ones that can see that, even my husband who means well, but when he says just

relax, I want to explode instead, oh well I will get by. Hope you get the

treatment you need Tracie, Marla

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of tiodaat@...

Sent: Tuesday, November 06, 2007

9:37 PM

To: Neurosarcoidosis

Subject: Re:

Re: Fwd: A Parent's Wish

Ron, as for me, I too

am the " same. " I spent today in Sacramento, just got home after 13 hrs, a

brain MRI and EEG. Too long a day..

I have been having

signs of neuro stuff, facial palsy, leg weakness, balance issues-- so wanted to

address these. I'll call tomorrow so he can call me w the results next

week.

We've upped my

Remicade to the maximum dose-- and that I have scheduled for tomorrow, but I

need to go to the Chronic Pain Support Group mtg, and so I may reschedule

for Thurs. when I need to be at a Spiritual Growth group mtg. I

have a feeling that this week is going to be one of those that takes me 2 weeks

to recover from.

Priorities, and

patience-- what a concept....

Love to you,

Tracie

See what's new at AOL.com and Make AOL Your

Homepage.

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Hey Ron

how are you doing, I did not get any attachment with this, was there suppose to

be one? Thinking of you, and praying life is treating you well, marl a

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of anewronald@...

Sent: Tuesday, November 06, 2007

4:28 PM

To: Neurosarcoidosis

Subject: Re:

Fwd: A Parent's Wish

I have no idea what

the music sounds like but I did enjoy everything else. I am not what I

consider a senior citizen, but my disability fell in line with everything I

read and my relationship with my Mom who is a senior citizen. So it was an eye

opening experience for me. I hope some of the other members can benefit

and relate to it as well.

As for me, I continue to

do the same. What about you, how are you doing?

Take care of yourself and

please tell Kim I asked about her.

Warm regards,

See what's new at AOL.com and Make AOL Your

Homepage.

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Share on other sites

Hey Ron

how are you doing, I did not get any attachment with this, was there suppose to

be one? Thinking of you, and praying life is treating you well, marl a

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of anewronald@...

Sent: Tuesday, November 06, 2007

4:28 PM

To: Neurosarcoidosis

Subject: Re:

Fwd: A Parent's Wish

I have no idea what

the music sounds like but I did enjoy everything else. I am not what I

consider a senior citizen, but my disability fell in line with everything I

read and my relationship with my Mom who is a senior citizen. So it was an eye

opening experience for me. I hope some of the other members can benefit

and relate to it as well.

As for me, I continue to

do the same. What about you, how are you doing?

Take care of yourself and

please tell Kim I asked about her.

Warm regards,

See what's new at AOL.com and Make AOL Your

Homepage.

Link to comment
Share on other sites

Marla, I agree when you don't get phone calls answered from the drs.even when you may call them more than once and leavea messages. It is so disrepectful. I say the same thing to my husband "I could be dying and they wouldn't care; remember this and sue them after I'm gone!" JK LOL What kind of OT are you going for ? For your legs? I went for my hands once. Hugs, Debbie Co-ModeratorMarla Bramer wrote: Tracie, I’m sorry to hear you are having more problems therefore more tests. My doctor that has been working with my insurance to get me on at least Humeria, had to leave town on a family emergency, so that’s on hold. I have an O.T. appt, tomorrow, has anyone tried O.T. and found it helpful?? I’ve had a couple of bad days and told the nurse at my pulomologists but since he was

out of town she refereed me to the Neuro I saw, that was Monday, here it is the end of Thursday and they still have not called me back, I guess I could lay down and die and they wouldn’t care, what did you say, “priorities and patience’s” I am having a lot of trouble with weakness in both legs now, left worse and balance too. My biggest fear is that all this time waiting for different medication may end up to late, and ?? It is much harder to reverse

symptoms then it is to treat them, why are we the only ones that can see that, even my husband who means well, but when he says just relax, I want to explode instead, oh well I will get by. Hope you get the treatment you need Tracie, Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of tiodaat@...Sent: Tuesday, November 06, 2007 9:37 PMTo: Neurosarcoidosis Subject: Re: Re: Fwd: A Parent's Wish Ron, as for me, I too am the "same." I spent today in Sacramento, just got home after 13 hrs, a brain MRI and EEG. Too long a day.. I have been having signs of neuro stuff, facial palsy, leg weakness, balance issues-- so wanted to address these. I'll call tomorrow so he can call me w the results next

week. We've upped my Remicade to the maximum dose-- and that I have scheduled for tomorrow, but I need to go to the Chronic Pain Support Group mtg, and so I may reschedule for Thurs. when I need to be at a Spiritual Growth group mtg. I have a feeling that this week is going to be one of those that takes me 2 weeks to recover from. Priorities, and patience-- what a concept.... Love to you, Tracie See what's new at AOL.com and Make AOL Your Homepage. Debbie T.Co-Moderator __________________________________________________

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Debbie wrote: Marla, I agree when you don't get phone calls answered from the drs.even when you may call them more than once and leavea messages. It is so disrepectful. I say the same thing to my husband "I could be dying and they wouldn't care; remember this and sue them after I'm gone!" JK LOL

What kind of OT are you going for ? For your legs? I went for my hands once. Hugs, Debbie Co-ModeratorMarla Bramer wrote: Tracie, I’m sorry to hear you are having more problems therefore more tests. My doctor that has been working with my insurance to get me on at least Humeria, had to leave town on a family emergency, so that’s on hold. I have an O.T. appt, tomorrow, has anyone tried O.T. and found it helpful?? I’ve had a couple of bad days and told the nurse at my pulomologists but since he was out of town she refereed me to the Neuro I saw, that was Monday, here it is the end of Thursday and they still

have not called me back, I guess I could lay down and die and they wouldn’t care, what did you say, “priorities and patience’s” I am having a lot of trouble with weakness in both legs now, left worse and balance too. My biggest fear is that all this time waiting for different medication may end up to late, and ?? It is much harder to reverse symptoms then it is to treat them, why are we the only ones that can see that, even my husband who means well,

but when he says just relax, I want to explode instead, oh well I will get by. Hope you get the treatment you need Tracie, Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of tiodaat@...Sent: Tuesday, November 06, 2007 9:37 PMTo: Neurosarcoidosis Subject: Re: Re: Fwd: A Parent's Wish Ron, as for me, I too am the "same." I spent today in Sacramento, just got home after 13 hrs, a brain MRI and EEG. Too long a day.. I have been having signs of neuro stuff, facial palsy, leg weakness, balance issues-- so wanted to address these. I'll call tomorrow so he can call me w the results next week. We've upped my Remicade to the maximum dose-- and that I have scheduled for tomorrow, but I need to go to the Chronic Pain Support Group mtg, and so I may reschedule for Thurs. when I need to be at a Spiritual Growth group mtg. I have a feeling that this week is going to be one of those that takes me 2 weeks to recover from. Priorities, and patience-- what a concept.... Love to you, Tracie See what's new at AOL.com and Make

AOL Your Homepage. Debbie T. Co-Moderator __________________________________________________

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, This was beautiful. It made me cry, I am actually sending this on to my mother. Although my grandmother passed 2 yrs. ago , it brings back so many memories because I was so close to her. Thank you for posting this. Debbieanewronald@... wrote: In a message dated 11/5/2007 12:29:58 A.M. Eastern Standard Time, DBlanchett813 writes: . Click here: PARENT'S WISH See what's new at AOL.com and Make AOL Your Homepage. Climb to the top of the charts! Play Star Shuffle: the word scramble challenge with star power. Play Now! = Email and AIM finally together See what's new at AOL.com and Make AOL Your Homepage. To: cyblanchett@..., one_perfect_lady@..., anewronald@..., spunkyb74@..., Alesiaj63@..., ladyeugeniajones@..., lmcglon@..., ilovemyhijos@..., mmyers@..., prescon@..., prescon2@..., Lizzniv@..., HubbardFamilyMin@..., B0236@..., rlewis@...Subject: Fwd: A Parent's

WishDate: Mon, 05 Nov 2007 00:29:56 -0500From: dblanchett813@... A Parent's Wish Date: Tue, 23 Oct 2007 15:43:42 +0000 . Click here: PARENT'S WISH See what's new at AOL.com and Make AOL Your Homepage. Climb to the top of the charts! Play Star Shuffle: the word scramble challenge with star power. Play Now! = Email and AIM finally together. You've gotta check out free AOL Mail!Debbie T.Co-Moderator __________________________________________________

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Debbie, actually the OT is more for my memory. I ask the Neuro if PT would help my legs at all and he No, but keep using them, I do I try to do the treadmill when ever I can, some weeks that might be twice a week or three times, or none. Some days are good and some bad. But the treadmill does help me. Marla

Marla,

I have to disagree with your Neuro. I have been having progressive leg weakness myself, and I just did a round of phys therapy for it. It was hard-- very hard-- but I did get back some of my balance and by getting the muscles stretched and more flexible (barely I might add) it does make a difference in my gait.

What you want to ask for is physical therapy for "Gait" training. They will have you doing leg lifts with no wieghts, then up it to 2 or 3# , then up it to 5 # and increasing the reps along the way as you get stronger. They also had me using the rubber bands - you hook them on a door, and do leg kicks, front back, side in, side out-- for starting at 5 reps with minimal resistance--and work up to more reps, then more resistance. They then put me on a balance board where I had to keep my feet in place, but work with the muscles in the calves of my legs to keep the ball into play (it was computerized). We'd start with 10 min on a recumbent bike, then calf raises, then take a wedge and stretch the heel (toes up higher than the heel on the wedge) so that you don't get the shin splints. Then to the raises that work the thigh muscles, then to the resistance, then to balance, and finish with 7 minutes on a treadmill.

I'm still fighting the legs- and balance, but not near as much. I did find that I was totally exhausted for 2 -3 days following each session-- as the toxins don't clear like they should. So it meant really working on my fluid intake, and increasing both the MSM and Vit C--so my lymphs didn't get angry.

With any of this--it's baby BABY steps-- and a slow process-- but if I can keep off the go cart for as long as I can, I will. (We've decided I need a riding a riding mower, so I can earn my keep on my way to the grocery store) Hey-- we gotta play it anyway we can-- anyone need a yard mowed????

Hugs dear friend,

Tracie

NS Co-owner/moderatorSee what's new at AOL.com and Make AOL Your Homepage.

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Debbie,

actually the OT is more for my memory. I ask the Neuro if PT would help

my legs at all and he No, but keep using them, I do I try to do the treadmill

when ever I can, some weeks that might be twice a week or three times, or none.

Some days are good and some bad. But the treadmill does help me.

Marla

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Debbie

Sent: Saturday, November 10, 2007

9:30 PM

To: Neurosarcoidosis

Subject: RE:

Re: Fwd: A Parent's Wish

Marla,

I agree when you don't get phone calls answered from the drs.even when

you may call them more than once and leavea messages. It is so

disrepectful. I say the same thing to my husband " I could be

dying and they wouldn't care; remember this and sue them after I'm

gone! " JK LOL

What kind of OT are you going for ? For your legs? I

went for my hands once.

Hugs, Debbie Co-Moderator

Marla Bramer <mebramer (AT) gmail (DOT) com>

wrote:

Tracie,

I’m sorry to hear you are having more problems therefore more

tests. My doctor that has been working with my insurance to get me on at

least Humeria, had to leave town on a family emergency, so that’s on

hold. I have an O.T. appt, tomorrow, has anyone tried O.T. and found it

helpful?? I’ve had a couple of bad days and told the nurse at my

pulomologists but since he was out of town she refereed me to the Neuro I saw,

that was Monday, here it is the end of Thursday and they still have not called

me back, I guess I could lay down and die and they wouldn’t care, what

did you say, “priorities and patience’s”

I am

having a lot of trouble with weakness in both legs now, left worse and balance

too.

My

biggest fear is that all this time waiting for different medication may end up

to late, and ??

It is

much harder to reverse symptoms then it is to treat them, why are we the only

ones that can see that, even my husband who means well, but when he says just

relax, I want to explode instead, oh well I will get by. Hope you get the

treatment you need Tracie, Marla

From: Neurosarcoidosis

[mailto:Neurosarcoidosis ]

On Behalf Of tiodaat (AT) aol (DOT) com

Sent: Tuesday, November 06, 2007

9:37 PM

To: Neurosarcoidosis

Subject: Re:

Re: Fwd: A Parent's Wish

Ron, as for me, I too

am the " same. " I spent today in Sacramento, just got home after

13 hrs, a brain MRI and EEG. Too long a day..

I have been having

signs of neuro stuff, facial palsy, leg weakness, balance issues-- so wanted to

address these. I'll call tomorrow so he can call me w the results next

week.

We've upped my

Remicade to the maximum dose-- and that I have scheduled for tomorrow, but I

need to go to the Chronic Pain Support Group mtg, and so I may reschedule

for Thurs. when I need to be at a Spiritual Growth group mtg. I

have a feeling that this week is going to be one of those that takes me 2 weeks

to recover from.

Priorities, and patience-- what a concept....

Love to you,

Tracie

See what's new at AOL.com and Make AOL Your

Homepage.

Debbie T.

Co-Moderator

__________________________________________________

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Share on other sites

Ron,

Thank you

for sharing, this was awesome, although I felt as if I was already there, I just

hope my kids don’t give up on me as I already have some of these issues,

my son said I was worse with memory then my 85 year old Mom. J

I love

the song, we are blessed to have an Opera singer as a Director in Kay, and

he sang this song at our last retreat.

Thinking

about you and hope that you are doing well my friend, marla

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Debbie

Sent: Sunday, November 11, 2007

4:29 AM

To: Neurosarcoidosis

Subject: Re:

Fwd: A Parent's Wish

,

This was beautiful. It made me cry, I am actually sending this on to my

mother. Although my grandmother passed 2 yrs. ago , it brings back so

many memories because I was so close to her. Thank you for posting this.

Debbie

anewronald (AT) aol (DOT) com

wrote:

In a message dated

11/5/2007 12:29:58 A.M. Eastern Standard Time, DBlanchett813 writes:

..

Click here: PARENT'S WISH

See what's new at AOL.com and Make AOL Your

Homepage.

Climb to the top of the charts!

Play Star Shuffle: the word scramble challenge with star power. Play

Now! =

size=2

width="100%" align=center>

Email and AIM finally together

See what's new at AOL.com and Make AOL Your

Homepage.

To: cyblanchett (AT) yahoo (DOT) com,

one_perfect_lady (AT) yahoo (DOT) com, anewronald (AT) aol (DOT) com,

spunkyb74 (AT) hotmail (DOT) com, Alesiaj63 (AT) aol (DOT) com, ladyeugeniajones (AT) yahoo (DOT) com,

lmcglon (AT) aol (DOT) com, ilovemyhijos (AT) yahoo (DOT) com, mmyers (AT) sarasota-ymca (DOT) org,

prescon (AT) earthlink (DOT) net, prescon2 (AT) earthlink (DOT) net, Lizzniv (AT) aol (DOT) com,

HubbardFamilyMin (AT) aol (DOT) com, B0236 (AT) aol (DOT) com, rlewis (AT) goxanthones (DOT) com

Subject: Fwd: A Parent's Wish

Date: Mon, 05 Nov 2007 00:29:56 -0500

From: dblanchett813 (AT) aol (DOT) com

A Parent's Wish

Date:

Tue, 23 Oct 2007

15:43:42 +0000

..

Click here: PARENT'S WISH

See what's new at AOL.com and Make AOL Your

Homepage.

Climb to the top of the charts! Play Star Shuffle: the word

scramble challenge with star power. Play Now! =

size=2

width="100%" align=center>

Email and AIM finally together. You've gotta check out free AOL Mail!

Debbie T.

Co-Moderator

__________________________________________________

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Share on other sites

Tracie I

love the spin you put on things. My problem is that I can’t lift my

leg at all, how could I lift weights, or did I read it wrong, I could have my

husband pick it up and to leg lifts that way, you know I guess I can ask, he

said the best thing for me was the treadmill if I keep doing that, and I do, I go

until my legs say stop, sometimes 5 mins and sometimes 20mins. I find

myself going longer since I’ve been doing it on all my good days, so I got

on it 3 times this week, but today is not a good day. I see my OT on

Monday, so will check with her, thanks again, Marla

From:

Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of tiodaat@...

Sent: Tuesday, November 13, 2007

10:48 PM

To:

Neurosarcoidosis

Subject: Re:

Re: Fwd: A Parent's Wish

In a message dated

11/13/2007 6:31:56 P.M. Pacific Standard Time, mebramer (AT) gmail (DOT) com writes:

Debbie, actually the OT is more for my

memory. I ask the Neuro if PT would help my legs at all and he No, but

keep using them, I do I try to do the treadmill when ever I can, some weeks

that might be twice a week or three times, or none. Some days are good and some

bad. But the treadmill does help me. Marla

Marla,

I have to

disagree with your Neuro. I have been having progressive leg weakness

myself, and I just did a round of phys therapy for it. It was hard-- very

hard-- but I did get back some of my balance and by getting the muscles

stretched and more flexible (barely I might add) it does make a difference in

my gait.

What you want to ask

for is physical therapy for " Gait " training. They will have you

doing leg lifts with no wieghts, then up it to 2 or 3# , then up it to 5 # and

increasing the reps along the way as you get stronger. They also had me

using the rubber bands - you hook them on a door, and do leg kicks, front back,

side in, side out-- for starting at 5 reps with minimal resistance--and

work up to more reps, then more resistance. They then put me on a balance

board where I had to keep my feet in place, but work with the muscles in the

calves of my legs to keep the ball into play (it was computerized).

We'd start with 10 min on a recumbent bike, then calf raises, then take a wedge

and stretch the heel (toes up higher than the heel on the wedge) so that you

don't get the shin splints. Then to the raises that work the thigh

muscles, then to the resistance, then to balance, and finish with 7 minutes on

a treadmill.

I'm still fighting the

legs- and balance, but not near as much. I did find that I was totally

exhausted for 2 -3 days following each session-- as the toxins don't clear like

they should. So it meant really working on my fluid intake, and

increasing both the MSM and Vit C--so my lymphs didn't get angry.

With any of this--it's

baby BABY steps-- and a slow process-- but if I can keep off the go cart for as

long as I can, I will. (We've decided I need a riding a riding

mower, so I can earn my keep on my way to the grocery store) Hey--

we gotta play it anyway we can-- anyone need a yard mowed????

Hugs dear friend,

Tracie

NS Co-owner/moderator

See what's new at AOL.com and Make AOL Your

Homepage.

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