Re: tawn-yin (hard y, like yet)

September 14, 2002

Rita,after pigging out on the cake be sure to give your grandson a gift. You

say this PLS person (Ed)is dieing to meet you,please give him my e-mail

address,I'd love to know what he thinks about you after he meets you,ha,ha!

Love and kisses C.

September 14, 2002

Rita,after pigging out on the cake be sure to give your grandson a gift. You

say this PLS person (Ed)is dieing to meet you,please give him my e-mail

address,I'd love to know what he thinks about you after he meets you,ha,ha!

Love and kisses C.

September 14, 2002

Rita,after pigging out on the cake be sure to give your grandson a gift. You

say this PLS person (Ed)is dieing to meet you,please give him my e-mail

address,I'd love to know what he thinks about you after he meets you,ha,ha!

Love and kisses C.

September 14, 2002

Rita take another look at your correction,I think you have misspelled word,or

did you mean world?Tee,hee!

September 14, 2002

Dolores & Folks:

I am going to Maine tomorrow for my grandson's 9th birthday celebration,

and I am going to visit a man named Ed who has PLS and I will be the

first PLSer he has ever met. He lives in the same town as my son, and I

found his name on the data base that R. had passed on to us. He

is eager to meet me (no cracks C or Mike). He can't took but has

a way to communicate thru his computer. I will brief you all on how it

goes. Hey , more birthday cake tomorrow.

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

When you worry it's like sitting in a rocking chair, it gives you a good

ride, but it doesn't get you any where.

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

September 14, 2002

Dolores & Folks:

I am going to Maine tomorrow for my grandson's 9th birthday celebration,

and I am going to visit a man named Ed who has PLS and I will be the

first PLSer he has ever met. He lives in the same town as my son, and I

found his name on the data base that R. had passed on to us. He

is eager to meet me (no cracks C or Mike). He can't took but has

a way to communicate thru his computer. I will brief you all on how it

goes. Hey , more birthday cake tomorrow.

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

When you worry it's like sitting in a rocking chair, it gives you a good

ride, but it doesn't get you any where.

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

September 14, 2002

Dolores & Folks:

I am going to Maine tomorrow for my grandson's 9th birthday celebration,

and I am going to visit a man named Ed who has PLS and I will be the

first PLSer he has ever met. He lives in the same town as my son, and I

found his name on the data base that R. had passed on to us. He

is eager to meet me (no cracks C or Mike). He can't took but has

a way to communicate thru his computer. I will brief you all on how it

goes. Hey , more birthday cake tomorrow.

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

When you worry it's like sitting in a rocking chair, it gives you a good

ride, but it doesn't get you any where.

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

September 14, 2002

OOOOPS, the world is talk not took!

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

When you worry it's like sitting in a rocking chair, it gives you a good

ride, but it doesn't get you any where.

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

September 14, 2002

OOOOPS, the world is talk not took!

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

When you worry it's like sitting in a rocking chair, it gives you a good

ride, but it doesn't get you any where.

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

September 14, 2002

OOOOPS, the world is talk not took!

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

When you worry it's like sitting in a rocking chair, it gives you a good

ride, but it doesn't get you any where.

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

September 15, 2002

UNsubscribe! ! ! ! !

September 15, 2002

UNsubscribe! ! ! ! !

September 15, 2002

UNsubscribe! ! ! ! !

September 15, 2002

C, he is not DIEING to meet me he is ANXIOUS, and I will have to

give your request some DEEP thought.

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

When you worry it's like sitting in a rocking chair, it gives you a good

ride, but it doesn't get you any where.

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

September 15, 2002

Dear Yetser, the imaginative one,

Thanks for the explanation. It sounds neat. Congratulations on having

the novel published. Was it a fantasy sci fi novel?

Yes, PLS does affect the immune system. I think it is called

" immunosuppression. " I am on Symmetrel, an anti-viral agent, to help me

keep from getting many of the viruses going around the hospital where I

work. If I do get one, it is usually a mild case. I take 2 20 mg pills

daily in the summer and 3 during the Autumn, Winter and early Spring. I

also am required to get a flu shot every season. I have the " dry eye

syndrome " also, but it could be caused by my allergies and the

medication I take for them. I do have some sinus problems, but have had

them for a lifetime, so they're not PLS related. No other infections,

but I do get cold sores frequently, or used to. Seems the Symmetrel may

be keeping those under some control.

I don't know about the voice problems being the first symptom. I

think many of us have had spasticity in the lower extremities first. The

slowness of walking and beginning to fall frequently without explanation

are usually the first symptoms mentioned.

Your hallucinations may be related to the medication you are taking.

I used to have them just before I fell asleep, was sleepy, or just

getting up. They don't seem as frequent now, but they were obviously

there when I was having them. I have also had very bizarre dreams. I

have hit my wife or kicked her in bed several times just in the past two

years. No medication changes until about 14 weeks ago. With that, they

seemed to stop. I had my baclofen increased by 20 mg per day. The

medication that I believe caused the hallucinations is Zanaflex. I have

some weird stories to tell about that. Yetser would come in handy here,

or, better, would understand it.

I hope this answers some of your questions. Thanks for answering mine

Mike Gray

tanniyny wrote:

> Mike Gray:

> the last y is for " Yetser " , as in yet-sir. it's a pen name, a

> character from a novel i wrote (and had published!!!!) many years ago.

> (i still think God was humoring me with the publication deal.)

> Tanniyn means dragon, Yetser is imagination in ancient Hebrew. it

> was an allegory, and a lot of fun to write.

> okay, now to the serious stuff: i've tried two times to post

> this, and got interrupted each previous time. is PLS in any way

> connected to the immune system? since developing this stuff, i've

> also developed chronic sinus, eye, urinary, and now digestive tract

> infections. my neurologist says no, my family physician says maybe,

> but som many things have been " off " since developing PLS, i'm not

> sure what is and what isn't related to who.

> next question: most people in this site talk of throat and speech

> difficulties. what form does this take? someone (can't remember

> who) said it was the first, or most common symptom - or earliest

> indicator. true, false, or am i hallucinating again? (i've got tow

> straps dangling from the ceiling of the bedroom, now. they ate my

> vacuum last night.)

> any information anyone could give would be very much helpful. and

> at this point, i could really use all the help i can get. and if

> there's a website out there that details all this, direct me (again,

> if necessary), and i'll leave everyone alone (at tleast until i read

> and understand it!)

>

> Yours in Him,

> tanniyny

>

September 15, 2002

You have to do it yourself. Read Gentner's posting about how to do

it and then check on the blue line, which will take you right to the

site and you can follow their instructions and unsubscribe. It really is

simple.

KYDONN@... wrote:

> UNsubscribe! ! ! ! !

>

September 15, 2002

You have to do it yourself. Read Gentner's posting about how to do

it and then check on the blue line, which will take you right to the

site and you can follow their instructions and unsubscribe. It really is

simple.

KYDONN@... wrote:

> UNsubscribe! ! ! ! !

>

September 15, 2002

You have to do it yourself. Read Gentner's posting about how to do

it and then check on the blue line, which will take you right to the

site and you can follow their instructions and unsubscribe. It really is

simple.

KYDONN@... wrote:

> UNsubscribe! ! ! ! !

>

September 16, 2002

Tanniyny, My PLS started with my voice we think. My neurologist thinks I may

have both PLS & Spasmodic Dystonia. My vocal cords are squeezed together

making it hard to speak they call this the abductor (sp) stage. I believe

most of the other PLS'er are just the opposite their voice cords are in the

relaxed stage were the vocal cords are not coming together. There is a name

for that but I can't remember it at the moment. I get the Botox shots into

the vocal cords. Botox is injected protein that stops the contraction of the

muscles around the injection area. The voice problem start in 1991 and I had

no other symptoms until 1995 when I started to trip and I would fall

backwards. The other symptoms later were exaggerated reflex,fascicilation

twitches, emotional libility,loss of balance.

Hope I have helped you regarding the voice being the first symptom in MY case

it was.

Flora Brand

St sburg FL.

September 16, 2002

I don't understand the subject " tawn-yin (hard y, like yet)

Did I miss something? Or, does it have nothing to do with

the messages below.

I don't get it.

But, then, there's a lot of stuff I don't get, and I don't think

it's the PLS that's doing it.

Sometimes, though, the subjects sure don't fit the messages

I read.

Blessings to all,

Laurel

Re: " tawn-yin (hard y, like yet)

You have to do it yourself. Read Gentner's posting about how to do

it and then check on the blue line, which will take you right to the

site and you can follow their instructions and unsubscribe. It really is

simple.

KYDONN@... wrote:

> UNsubscribe! ! ! ! !

>

September 16, 2002

I don't understand the subject " tawn-yin (hard y, like yet)

Did I miss something? Or, does it have nothing to do with

the messages below.

I don't get it.

But, then, there's a lot of stuff I don't get, and I don't think

it's the PLS that's doing it.

Sometimes, though, the subjects sure don't fit the messages

I read.

Blessings to all,

Laurel

Re: " tawn-yin (hard y, like yet)

You have to do it yourself. Read Gentner's posting about how to do

it and then check on the blue line, which will take you right to the

site and you can follow their instructions and unsubscribe. It really is

simple.

KYDONN@... wrote:

> UNsubscribe! ! ! ! !

>

September 16, 2002

I don't understand the subject " tawn-yin (hard y, like yet)

Did I miss something? Or, does it have nothing to do with

the messages below.

I don't get it.

But, then, there's a lot of stuff I don't get, and I don't think

it's the PLS that's doing it.

Sometimes, though, the subjects sure don't fit the messages

I read.

Blessings to all,

Laurel

Re: " tawn-yin (hard y, like yet)

You have to do it yourself. Read Gentner's posting about how to do

it and then check on the blue line, which will take you right to the

site and you can follow their instructions and unsubscribe. It really is

simple.

KYDONN@... wrote:

> UNsubscribe! ! ! ! !

>

September 16, 2002

Donna, I do run out of air when talking. I got my last shot in January

17 of this year so I am about ready for one but I do stretch them out. I

should get one ever 6 to 7 months but I really don't like going through it.

It doesn't hurt, really but its always been the idea what they are doing to

me. You think I would be use to them. I think since 1991 I've had 12 to 13

shots by three different doctors but I love my ENT doctor that does it now.

In the beginning there were not many doctors around that knew much about it.

My first was at University of Fla. Medical Center by a doctor Riddell. He

went on a medical sabbatical so I went to another ENT in Tampa but I left

crying. He had only done a few patients and had stuck me 4 times so I told

him to stop because compared to Dr Riddel this doctor didn't have a clue.

Now I have Dr Coundreotis here in St Pete. When I go in for the procedure my

neurologist and his tech person (that puts the probes on my neck to let them

know were the muscles are) and the ENT doctor is there. So I feel relaxed

knowing I have that many minds on ME!! After they all agree they are in the

right spot the botox is released. The entire procedure is over in 5 to 10

minutes because they do both sides of the vocal cords. Before I have the

procedure I take a valium that just takes the edge off of things. I go home

and resume my normal activity. Right now my voice is ok but if I talk a lot I

do run out of air and strain to get the words out. My voice has always been

deep but after the shot it gets deeper after the botox wears off. I should

say that in about a week after the shot you lose your voice to a whisper. It

can vary to three to six weeks before your voice gets back to normal (what

ever that is). What ever decision you make I would look long and hard for a

doctor that has done this a number of times. By the way my voice is loud!!!

..............................Flora

September 16, 2002