I'mmmmm Baaaaaack

[Guest guest]

Dear Group,

I have been trying to get this letter out to you ever since yesterday. My

server was down, and when I did get back on line, It kept disconnecting on me

and I'd lose everything I'd written.

But anyway, I am overjoyed at being a part of this research study on RLS.

I guess to some extent research is secret, but I can tell you what I observed

from my end of it.

And yes, I did keep a step by step journal of each day. But first let me tell

you about these wonderful doctors sent from heaven.

Dr. Bara-Jeminez and Dr. Oksu (the doctor working with him on this) are both

very nice and considerate young doctors. They listen to what you have to say

with interest and concern, and never make you feel as though you are wasting

their time as some doctors do. Sorry if there are any doctors out there, but

it's true. I said some, not all.

Dr. Bara is from Columbia and Dr. Oksu is from Turkey. He (Dr Oksu) hasn't been

here very long, and it's not hard to make him smile and blush, because he is

very shy.

They are both down to earth, regular guys. Sometimes when Dr. Bara would come

in for the night sessions, he would be wearing a pair of shorts and a T-shirt

with a picture of a whale on it. You know, something like what we would do.

All of the nurses and staff were just great, there was only one that I called

Miss Rules and Regulations behind her back. Jodi will know which one when she

gets here. At the end of the wing I was in there was a lounge room with a watts

telephone line that I was allowed to make as many long distance calls as I

wanted. So of course I took advantage of that. I even called Connie & Jodi a

few times. Would have called more of you if I had had your phone numbers

..

The 14th floor is a recreation area for the patients. A gym, arts & craft room,

library with a computer for patients use. I tried to send you all a message

from there, but I did something wrong. and it got lost in space. Jodi said it

didn't arrive. Don't know much about MacIntosh. excuses, excuses. I painted an

entrance rug with Seasons Greetings on it, and two T-shirts, and make a wooden

secraterys box. They had all kinds of needle point, crochet, knitting, you name

it. Down stairs on the 1st floor ther is an auditorium, and I just happen to be

coming off the elevator and heard an orchestra practicing. I went in and sat

down and watched. The MIH orchestra was practicing for a Sunday at 3:00

production of " The Messiah " one hour after I was to leave. I missed it, but at

least I got to hear them practice, and heard some very good singers. It didn't

seem to matter that I was sitting there with about a zillion multicolored wires

jotting out all over me. I guess they knew it was a research hospital. I

looked like Phillis Diller with her fingers in a light socket, and felt like I

was bound up in a wire spider web. !!LOL!! But I'll get to that. I also could

have gone outside on a bike if I had wanted to. NOT

Of course all of these leisure things can only be done during your free time,

and mine was after lunch until about 7 or 8 PM

Anyway, the MIH has a lot more to offer than I have mentioned to keep the

patients from being bored while they are there. And by the way, the food is

great.

One of the first things they did was to connect all these electrobes to my

head, arms legs, feet, back and neck. Bonnie Graham, the sleep technicion spent

3 1/2 hours with me doing that. I liked Bonnie right away, and got to know her

pretty well. She is good at what she does. Even Dr. Bara commented that Bonnie

was amazing, and willing to come in if needed, even if she was off. He said

some nurses only do what they have to do, but not Bonnie, she loved to work and

was always willing to help.

The first night session, stimulant were applied to my right foot. Small shock

waves, and another kind that was like a thump, thump, thump. Not so much though

that I couldn't stand it, even though some of the times I was more sensitive to

the same strength than other times. After several hours, they stopped and

wanted me to sleep and do the same procedure while I slelpt. But I couldn't

sleep at all that night, so at 6:00 AM they cancelled it, which resulted in me

having to stay an extra day.

This same procedure continued twice a day, with a few deviaations added and/or

deleted with each session.

The hardest thing I found to do was to stare at a

certain object without blinking (a blink break now and then), and relaxing so

the symlptoms would do their thing on their own without me stopping them by

moving or stretching out my legs. I wasn't aware my legs could fly on their own

without my help. Boy did I find out.

To me, one of the most important things that I learned was the sensitivity of my

skin. The slightest touch of anything, a wire, a piece of cloth, a tiny tickle

or itch, even air blowing across my feet would set off my symptoms like you

wouldn't believe. The third and forth night they were jerking without warning

so hard and strong that my upper thighs were soo sore the next day. He said

that was PLMS, I didn't even know I had that. He was pleased with the strong

and very readable readouts on the screen. He didn't hide his reactions from me.

Once or twice he said " This is great, are you sure you aren't doing that

yourself? " " Is it happening on it's on? " He even videotaped my legs at times. I

had to sign a paper before he would do that. He told me often I was doing

great, and was a good subject.

The last night , before the session began, he asked me many questions, writing

everything down, and wanting my descrpions of the things he was asking me.

Nothing goes unnoticed and he is very thurough. Because of my sensitive skin,

he started checking my reflexes and found all of them to be hyper excitable.

His questions were about my neck pain and lower back pain, also if I ever had

shooting pains down my legs and if they ever got numb. Same with my arms.

When he finished writing down everything I said, he told me he wanted me to come

back in two weeks, He wants to do a MRI and some other test to see if I have a

pinched nerve. My neck and lower back have never been X-rayed, and for years

when I would tell doctors about my back and neck pain, all they would do is send

me to therapy for some exercises that would make it worse, or in some cases they

would just pass it off and not even listen. I'm not saying this could be my

whole problem with RLS, but it sure gives me hope. He didn't hesitate, he

immediately said he wanted me to come back. So you can see why I am soo

overjoyed and willing to go through anything to get to the cause of this horrid

disorder. Also he wants me to check into my family history, and contact as many

as possible to find out if any of them have it. I know my brother does, but my

parents are passed away, so I don't know about them. I have 4 daughters, and

have already found out that 3 of them do have mild cases. So far I've found out

one of my grandsons, 13 years old, has it and was diagnosed with ADHD. I talked

to him on the phone night before last and by the was he described it, I

recognized it.

It's getting late, and I have to get up early tomorrow whether I sleep or not,

so I'll sign off for now, but there is more to tell, and as it all comes back to

me in bits and pieces I will tell you in future emails.

I know this is long, but many of you told me you wanted a detail letter, so bear

with me.

Before I left, I told both doctors that God is working through them, that they

were an answer to prayer for us.

I am excited and feel like progress is being made. I am so grateful for these

guys. They are a Godsend. Even if the cure doesn't come during my lifetime

(and I believe it will), It will surely help the generations to come. And that

makes it worth anything I have the privilage to go through.

If you are a praying person, Pray. If you're not, you better think again,

because you need it and these doctors need it.

Signing off until I can think of more.

Gutzy June 65, Delaware

[Guest guest]

hi gutzy june - very very interesting and hopefully very benificial to our

group - please keep us posted. as i recall the exams are being done at

bethesda naval hospital is that not correct??

JACK

27 degrees in western nys but still on the warm side for this time of year

At 06:38 AM 12/9/98 -0000, you wrote:

>From: jwharton@...

>

>Dear Group,

>

>I have been trying to get this letter out to you ever since yesterday. My

server was down, and when I did get back on line, It kept disconnecting on

me and I'd lose everything I'd written.

>

>But anyway, I am overjoyed at being a part of this research study on RLS.

>

>I guess to some extent research is secret, but I can tell you what I

observed from my end of it.

>And yes, I did keep a step by step journal of each day. But first let me

tell you about these wonderful doctors sent from heaven.

>

>Dr. Bara-Jeminez and Dr. Oksu (the doctor working with him on this) are

both very nice and considerate young doctors. They listen to what you have

to say with interest and concern, and never make you feel as though you are

wasting their time as some doctors do. Sorry if there are any doctors out

there, but it's true. I said some, not all.

>

>Dr. Bara is from Columbia and Dr. Oksu is from Turkey. He (Dr Oksu)

hasn't been here very long, and it's not hard to make him smile and blush,

because he is very shy.

>

>They are both down to earth, regular guys. Sometimes when Dr. Bara would

come in for the night sessions, he would be wearing a pair of shorts and a

T-shirt with a picture of a whale on it. You know, something like what we

would do.

>

>All of the nurses and staff were just great, there was only one that I

called Miss Rules and Regulations behind her back. Jodi will know which

one when she gets here. At the end of the wing I was in there was a lounge

room with a watts telephone line that I was allowed to make as many long

distance calls as I wanted. So of course I took advantage of that. I even

called Connie & Jodi a few times. Would have called more of you if I had

had your phone numbers

>.

>The 14th floor is a recreation area for the patients. A gym, arts & craft

room, library with a computer for patients use. I tried to send you all a

message from there, but I did something wrong. and it got lost in space.

Jodi said it didn't arrive. Don't know much about MacIntosh. excuses,

excuses. I painted an entrance rug with Seasons Greetings on it, and two

T-shirts, and make a wooden secraterys box. They had all kinds of needle

point, crochet, knitting, you name it. Down stairs on the 1st floor ther

is an auditorium, and I just happen to be coming off the elevator and

heard an orchestra practicing. I went in and sat down and watched. The

MIH orchestra was practicing for a Sunday at 3:00 production of " The

Messiah " one hour after I was to leave. I missed it, but at least I got to

hear them practice, and heard some very good singers. It didn't seem to

matter that I was sitting there with about a zillion multicolored wires

jotting out all over me. I guess they knew it was a research hospital. I

looked like Phillis Diller with her fingers in a light socket, and felt

like I was bound up in a wire spider web. !!LOL!! But I'll get to that. I

also could have gone outside on a bike if I had wanted to. NOT

>Of course all of these leisure things can only be done during your free

time, and mine was after lunch until about 7 or 8 PM

>Anyway, the MIH has a lot more to offer than I have mentioned to keep the

patients from being bored while they are there. And by the way, the food

is great.

>

>One of the first things they did was to connect all these electrobes to

my head, arms legs, feet, back and neck. Bonnie Graham, the sleep

technicion spent 3 1/2 hours with me doing that. I liked Bonnie right

away, and got to know her pretty well. She is good at what she does. Even

Dr. Bara commented that Bonnie was amazing, and willing to come in if

needed, even if she was off. He said some nurses only do what they have to

do, but not Bonnie, she loved to work and was always willing to help.

>

>The first night session, stimulant were applied to my right foot. Small

shock waves, and another kind that was like a thump, thump, thump. Not so

much though that I couldn't stand it, even though some of the times I was

more sensitive to the same strength than other times. After several hours,

they stopped and wanted me to sleep and do the same procedure while I

slelpt. But I couldn't sleep at all that night, so at 6:00 AM they

cancelled it, which resulted in me having to stay an extra day.

>

>This same procedure continued twice a day, with a few deviaations added

and/or deleted with each session.

>

>The hardest thing I found to do was to stare at a

>certain object without blinking (a blink break now and then), and relaxing

so the symlptoms would do their thing on their own without me stopping them

by moving or stretching out my legs. I wasn't aware my legs could fly on

their own without my help. Boy did I find out.

>

>To me, one of the most important things that I learned was the sensitivity

of my skin. The slightest touch of anything, a wire, a piece of cloth, a

tiny tickle or itch, even air blowing across my feet would set off my

symptoms like you wouldn't believe. The third and forth night they were

jerking without warning so hard and strong that my upper thighs were soo

sore the next day. He said that was PLMS, I didn't even know I had that.

He was pleased with the strong and very readable readouts on the screen.

He didn't hide his reactions from me. Once or twice he said " This is

great, are you sure you aren't doing that yourself? " " Is it happening on

it's on? " He even videotaped my legs at times. I had to sign a paper

before he would do that. He told me often I was doing great, and was a

good subject.

>

>The last night , before the session began, he asked me many questions,

writing everything down, and wanting my descrpions of the things he was

asking me. Nothing goes unnoticed and he is very thurough. Because of my

sensitive skin, he started checking my reflexes and found all of them to be

hyper excitable. His questions were about my neck pain and lower back

pain, also if I ever had shooting pains down my legs and if they ever got

numb. Same with my arms.

>When he finished writing down everything I said, he told me he wanted me

to come back in two weeks, He wants to do a MRI and some other test to see

if I have a pinched nerve. My neck and lower back have never been

X-rayed, and for years when I would tell doctors about my back and neck

pain, all they would do is send me to therapy for some exercises that would

make it worse, or in some cases they would just pass it off and not even

listen. I'm not saying this could be my whole problem with RLS, but it

sure gives me hope. He didn't hesitate, he immediately said he wanted me

to come back. So you can see why I am soo overjoyed and willing to go

through anything to get to the cause of this horrid disorder. Also he

wants me to check into my family history, and contact as many as possible

to find out if any of them have it. I know my brother does, but my parents

are passed away, so I don't know about them. I have 4 daughters, and have

already found out that 3 of them do have mild cases. So far I've found out

one of my grandsons, 13 years old, has it and was diagnosed with ADHD. I

talked to him on the phone night before last and by the was he described

it, I recognized it.

>

>It's getting late, and I have to get up early tomorrow whether I sleep or

not, so I'll sign off for now, but there is more to tell, and as it all

comes back to me in bits and pieces I will tell you in future emails.

>

>I know this is long, but many of you told me you wanted a detail letter,

so bear with me.

>

>Before I left, I told both doctors that God is working through them, that

they were an answer to prayer for us.

>

> I am excited and feel like progress is being made. I am so grateful for

these guys. They are a Godsend. Even if the cure doesn't come during my

lifetime (and I believe it will), It will surely help the generations to

come. And that makes it worth anything I have the privilage to go through.

>

>If you are a praying person, Pray. If you're not, you better think again,

because you need it and these doctors need it.

>Signing off until I can think of more.

>Gutzy June 65, Delaware

>

>

>

>

>------------------------------------------------------------------------

>