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Nan, I am drinking my tasters choice vanilla roast decaf coffee right

now. Isn't that stuff just the best. Have you tried the chocolate roast

yet?

I have been looking for the chocolate roast but have been unable to find

it.

Laverne

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Excuse me Nan...I am butting in...again<L>. I love the chocolate roast

with Chocolate Divinci and a hit of cream. Very nice.

>

> Nan, I am drinking my tasters choice vanilla roast decaf coffee right

> now. Isn't that stuff just the best. Have you tried the chocolate roast

> yet?

> I have been looking for the chocolate roast but have been unable to find

> it.

> Laverne

>

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  • 2 months later...

Lynn,

Doug is my husband he gets PLS email at work so he makes comments and I make comments sometimes on the same things Sorry for the confusion.

Flora Brand

St Pete Fl.

belgium46@...

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Flora,

Thanks for clearing that up for me. How is your husband doing?

Who does he work for? Are the fires down there, close to you? Thanks

again.

LYNN from Az.

Lynn,

Doug is my husband he gets PLS email at work so he makes comments and I make comments sometimes on the same things Sorry for the confusion.

Flora Brand

St Pete Fl.

belgium46@...

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Lynn,

I am the one who has PLS I retired in 1996 from a job I really loved. Working at a college bookstore. My husband is fine nothing wrong with him.

I use a four wheeler walker w/hand brakes getting a new one soon I have worn this one out its 4 yrs. old and believe me its has a lot of miles on it I'm thinking about putting one of those mileage gadgets on it to keep track of how far I can go.

Flora/St Pete Fl;

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  • 4 weeks later...
Guest guest

Rita,

Back to ya' and welcome back. Mike Gray

ritadfromhollis@... wrote:

Luv & Hugs!

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

Some people succeed in spite of their handicap. Others succeed

because

of them.

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  • 4 weeks later...
Guest guest

In a message dated 04-18-01 5:48:29 PM Eastern Daylight Time, secor3@...

writes:

<< Jan, can you let us know how it is when you get it and if you like it. I

am sure we'd all like to hear about it. >>

I'll do that.. I'll report back to yall after I get it :)

Jan " Typing is my life "

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  • 3 weeks later...
Guest guest

Hi Zsolt!

Actually the genetic tests that I had done were for

spino cerebellar ataxia. There are many genetic

defects that cause SCA and I was tested for all of

them. The results were negative, which I think is

good.(?)

There are no commercially available tests yet for HSP.

At least two defective genes, and several gene loci

for HSP have been discovered. But tests for the genes

discovered to date are only performed on a research

basis (with the possible exception of prenatal testing

for a couple with a known HSP gene defect).

Mark

--- The Zsolt wrote:

>snip<

> Dear Mark Weber,

> Did your tests for HSP come back positive? If so,

> does this change your

> diagnosis from possible PLS to HSP, or, like

> with his PLS/MS

> situation, are you now a PLSHSPer? Or would that be

> HSPPLSer? Also, is

> the test for HSP something that would automatically

> be included in the

> huge battery of tests many of us have undergone, or

> is it something we

> ought to be asking our doctors to look into? I look

> forward to hearing

> your views on the Symposium. (Also, thanks for

> forwarding Dean's message

> about walking sticks, wheelchairs, etc. Very

> pertinent and useful.)

>snip<

> Be well,

> Zsolt

__________________________________________________

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Guest guest

G'day Zsolt,

That was probably my main concern at first after my fall as I had seen

quite a few postings from people with PLS or ALS which stated that they

felt that after a significant fall and/or surgery and/or long hospital

stay their symptoms had progressed quickly and they never recovered to

anything like where they were before the trauma. Fortunately it seems

that despite the fall, surgery and a long hospital/rehab stay and despite

being more than six months further down the track with PLS I think I am

now about back to where I was before the fall.

Next week I intend starting to use my walker at work again whereas since

returning to work I have used my wheelchair. The reason for this

is that I have been experiencing pain when walking. There is as expected

some pain in my hip itself but this only tends to occur when I attempt

to take a longer than usual (but still very short by 'normal' people's

standards!) step. As I said, that was not unexpected but what has

been a problem is that every step of my right leg has been accompanied

by moderate pain in the front of my thigh, a few inches above the knee.

I guess it has come about because they had to slice and dice the muscles

above there in my hip in order to do do the repair job.

The problem is that every once in a while the pain suddenly becomes

a moderately severe shooting type pain which has the effect of making my

leg tend to buckle a bit. Of course for people with PLS who already

have precarious balance and strength that can result in a fall - not something

I want to try again! The upshot is that I have tended to walk even

more slowly than normal and haven't wanted to use even more of the time

of the people at work who accompany me from my car park to desk at the

start of the day and back again at the end.

I have been using the walker at home since I was allowed to put full

weight on my right leg about three months ago because the (lack of) speed

around the house is not a problem. In the last few weeks the pain

has been subsiding so I am ready to bite the bullet and go back to using

the walker again at work too. No doubt Monday morning will be a time

of trepidation until I get out of the car and past the point where it all

began so many months ago - unpleasant memories.....

One thing which I feel contributed to not suffering a deterioration

in my general condition was choosing not to have my operation under general

anaesthetic but instead opting to just have a spinal block. It did

mean that through my sedated haze I could hear all the drilling being performed

on my leg, but what the heck! I have memories of my operation to

take away and forever cherish??? :-)

The Zsolt wrote:

<snip>

Dear Covington,

You may have already done this,

but if not, I am interested in hearing

how your surgery and subsequent rehab have affected your PLS.

Specifically, I am interested to know if you feel you had any further

deterioration during this time, and how much you've been able to

rehabilitate to the condition you were in when the break occurred.

<snip>

Be well,

Zsolt

--

.

,-._|\ Covington

/ Oz \

\_,--.x/

v

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  • 2 weeks later...
Guest guest

Rita,

Calm down girl!! You are doing way too much!! I know exactly what you mean

by doing too much. When I came back from Vegas, I had to rest for weeks

before I felt better. I over did it by a lot. My PLS symptoms were all

much worse and I was so afraid I would stay at that point. I came back

eventually, but not to the place where I was before the vacation. I have

learned a great lesson. When on vacation, rest when you're tired and don't

try to do EVERYTHING!! Thanks for reminding of this again. Take care.

Sue

(unknown)

> Pressing the wrong damn button LOL

>

> 4. I could just go on and on, but I won't.

>

> As most of you know, I believe in " less is best " , and I always say

> " Listen to your body " . Well I should practice what I preach, because I

> have been so swept up with doing all these thing, that I didn't realize

> what I was doing to myself. By this past Saturday, I had arranged a

> meet of a Stock Investment Club " I had joined. The meeting started at

> 8:00 AM and lasted till 4:00. Well by 1:00 PM, I was near collapse. I

> just thought my PLS condition was getting worse, when all the time I was

> making it worsen by pushing myself beyond my bodies ability to function.

>

> So now things have quieted down (my choice), and I am starting to feel

> stronger, and my legs don't feel as week as they did a week ago.

>

> So I hope you get the message i am trying to relay to all of you, and

> that is, please do everything in moderation, and if you can't " do it " -

> don't bother, there are other things we still can less strenuous.

>

> Good to be back!

>

> Rita

>

> Luv & Hugs!

>

>

>

>

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

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

> of them.

>

>

>

>

>

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  • 1 year later...

Thank

so much for sharing this TERRIFIC poem – I am still chuckling!!

Barbi

(unknown)

GAL`S PRAYER:

Lord, Before I lay me down to

sleep, I pray for a man, who`s not

a creep,

One who`s handsome, smart and

strong, One who`s loves to listen

long,

One who thinks before he

speaks,

When he says he`ll call, he

won`t wait weeks.

I pray that he is gainfully

employed,

And when I spend his cash, he

won`t be annoyed.

Pulls out my chair and opens my

door,

Massages my back and begs to do

more.

Oh! send me a man who`ll make

love to my mind,

Knows what to answer to

" How big`s my behind? "

One who`ll make love till my

body`s a`twitchin,

In the hall, in the garden and

in the kitchen!

I pray that this man will love

me to no end,

And never attempt to hit on my

friend.

And as I kneel and pray beside

my bed,

I look at the creep you sent me

instead. Amen

" The

LUPIES Store " Come check out our store...

http://www.cafepress.com/thelupies

" The LUPIES Web Page "

http://www.itzarion.com/lupusgroup.html

" The LUPIES online photo albums! "

Check out what your fellow Lupies look like...

http://www.picturetrail.com/gallery/view?username=lupies

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  • 5 years later...

Go to Youtube and search robotic prostate surgery. You will have to sign up and get an account but it easy and its free. Check it out, these guys are good.

Rick

(unknown)

Hi : Pl. let me know how to get to 'Youtube" to watch the prostectomy operation, which u claimed u have watched it. Thanks

Never miss a thing. Make Yahoo your homepage.

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  • 3 weeks later...

,

Yes, I would choose surgery again. I did a lot of research prior to making my decision. It was not an easy one, but I believe for me, the appropriate one. I was 56.

Hans

Re: (unknown)

Hans,

Would you choose surgery if could do it all over again? If you don't mind sharing your age. Not that should matter regarding quality of life.

STephanie

Never miss a thing. Make Yahoo your homepage.

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

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Hi ,

You did not write to me, but if I had it to do over, I believe

that there are better alternatives.

I wish you all the bestAubrey Pilgrim, DC (Ret.) Author ofA Revolutionary Approach to Prostate Cancer-Read the original book for FREE at: http://www.prostatepointers.org/prostate/lay/apilgrim/Read new edition for FREE at http://www.cancer.prostate-help.org/capilgr.htmDr. E. Crawford is co-author of the revision

Hans,

Would you choose surgery if could do it all over again? If you don't mind sharing your age. Not that should matter regarding quality of life.

STephanieStart the year off right. Easy ways to stay in shape in the new year.

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We live in New Hampshire. My husband had colon cancer a few years ago so he can't have the robotic surgery. Thank you for your response. Good luck to you in the future.

--------- (unknown)

My husband was just told he has an agressive form of prostate cancer. And the doctor wants to operate and then do radiation. We're going for a second opinion. But does anyone have aggressive form of prostate cancer and what did you do?

Never miss a thing. Make Yahoo your homepage.

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