Re:

[Guest guest]

,

I also have ALS. I want to let you know that there are others on this group

with ALS. I am also on the living-with-alsyahoogroups (DOT) ...

E-mail Address(es):

living-with-als you subscribe to that the same way you

subscribed to the PLS group. You will find it a helpful group also. It is

moderated and so is slower to see your posts. Another site is called

www.Braintalk.com got there and sign in . Go throught the necessary steps to

get to the ALS group. There is good information there. They are way ahead of

most of the ALS sites on trials and tests.

Feel free to email me personally also if you would like to.

Sherrykbeau@...

You will need all the support you can get.

Sherry

Sherry Ketzbeau

Lindenwood Acres

http://lindenwoods.tripod.com/index.html

-----

From: Granger

To: PLS-FRIENDS

Sent: Sunday, May 25, 2003 9:44 PM

Subject:

[Guest guest]

HI RACHEL,

WELCOME TO THE GROUP. I AM SO SORRY FOR YOUR DX.

MY HUSBAND ALSO HAS ALS. HE STARTED OUT WITH A PLS DX. IN 2000 AND LAST

YEAR WAS CHANGED TO ALS. DO YOU HAVE HELP.

DON IS GETTING PRETTY ADVANCED. HE NOW HAS A FEEDING TUBE. FOR LIQUIDS. HE

IS ABLE TO EAT SOFT FOODS YET AND THICKEN LIQUIDS. WITH SOME EMAGINATION I

HAVE BEEN ABLE TO ADJUST MOST EVERYTHIG SO THAT HE IS ABLE TO ENJOY HIS

FOODS. I USE BABY CERIAL TO THICKEN MILK BASED FOODS. RICE LEAVES LESS OF

A FLAVOR BEHIND. INSTANT POTATOES WORKS WELL TO THICKEN SOUPS. AND THICK

IT FOR JUICES. HE'S HAD SOME OTHER HEALTH PROBLEMS CAUSED BY THE INABILITY

TO MOVE LIKE BEFORE. AND HE HIS W/C BOUND. WE JUST GOT A VAN WITH A

LIFT WITH A LOT OF HELP FROM SOME FRIENDS. AFTER ALMOST A YEAR OF BEING

HOME BOUND IT IS SO NICE TO BEABLE TO GET HIM OUT AGAIN.

RACHEL, IF WE CAN BE OF ANY ASSISTANCE PLEASE DON'T HESITATE TO ASK. YOU

MAY CONTACK US ON AN INDIVIDUAL BASIS IF YOU WOULD LIKE. BLUCAS @WINESBURG

COM

HANG IN THERE.

LOVE

BONNIE CAL

DON PAL DX 9/03

--

Hello,

My name is Granger and I am 43 years old. I was diagnosed with ALS in

January and am happy to be joining a support group. I know I have a tough

road ahead of me but I'm a fighter and have hope that a cure for this

disease will be found soon.

Thanks for having me.

[Guest guest]

Comments interspersed...

In a message dated 06/25/2003 5:14:56 PM US Mountain Standard Time,

debbiesg@... writes:

> Neuropathy is a common complication of long-term diabetes.

>

> The exact cause of diabetic neuropathy is not known.

I checked under Google - diabetic neuropathy, cause of - and got 16,100 hits.

I only read a few of them (smile) but a number of them agreed with what I

understand is the cause of PN, which is nerve or blood vessel injury due to

prolonged high levels of blood glucose.

>

> Most people with diabetes develop some neuropathy over the years.

>

> I have periferal neuropathy and I have feeling in my feet. You don't only

> get it in your feet.

>

I understand that. You can also get it in you gut, and that's called

gastroparesis.

> It wasn't the world news or whatever it was the CDC, Center for Disease

> Control.

>

> They had diabetes back in the old days. Like 3000 BC. It was documented.

>

Well, sure. I think it was the Greeks who named it diabetes which, if I

recall correctly, meant something like " sweet urine " . That's how they diagnosed

it -- tasted urine. (Wouldn't have wanted that job!)

> You all keep on believeing that you won't have complications if you keep

> your sugar in control and you are exempt from caring for your feet, eyes,

> kidneys and heart.

>

> All medical journals I have read agree the longer you have diabetes the more

> complications you will have. Doesn't qualify that you have to be out of

> control. I believe over 30 years is the normal number used. Type 1's are more

> likely than type 2's to get them.

>

Up until fairly recently there was no such thing as " tight control " so

anything the journals say about complications being inevitable won't wash. I

still

maintain that if we can consistently keep our BGs at non-diabetic numbers, we

won't get complications.

> How many of you here fit that category? Type 1 for over 30 years?

>

> Just me.

Well, actually I know at least two people at my " other diabetes list " who

have had it that long.

But I guess you've got me there (you win) because I'm probably not going to

have it for 30 years unless I live to 90. Well, OTOH maybe I will, my mother

recently died at 99.

Vicki

[Guest guest]

At 06:36 PM 6/25/2003, Debbie wrote:

>You all keep on believeing that you won't have complications if you keep

>your sugar in control and you are exempt from caring for your feet, eyes,

>kidneys and heart.

>

>All medical journals I have read agree the longer you have diabetes the

>more complications you will have. Doesn't qualify that you have to be out

>of control. I believe over 30 years is the normal number used. Type 1's

>are more likely than type 2's to get them.

Hi Debbie,

I'm not sure if you are familiar with the D.C.C.T. (Diabetes Control and

Complications Trial). It was conducted from 1983 to 1993 by the NIDDK

(National Institute of Diabetes and Digestive and Kidney Diseases). Here

are two passages from their website:

" What Is the DCCT?

The DCCT is a clinical study conducted from 1983 to 1993 by the National

Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). The study

showed that keeping blood glucose levels as close to normal as possible

slows the onset and progression of eye, kidney, and nerve diseases caused

by diabetes. In fact, it demonstrated that any sustained lowering of blood

glucose helps, even if the person has a history of poor control.

The largest, most comprehensive diabetes study ever conducted, the DCCT

involved 1,441 volunteers with type 1 diabetes and 29 medical centers in

the United States and Canada. Volunteers had diabetes for at least 1 year

but no longer than 15 years. They also were required to have no, or only

early signs of, diabetic eye disease.

The study compared the effects of two treatment regimens--standard therapy

and intensive control--on the complications of diabetes. Volunteers were

randomly assigned to each treatment group. "

" DCCT Study Findings:

Lowering blood glucose reduces risk:

Eye disease

76% reduced risk

Kidney disease

50% reduced risk

Nerve disease

60% reduced risk "

The link is: http://www.niddk.nih.gov/health/diabetes/pubs/dcct1/dcct.htm

Based on the findings from this trial, the manner of treatment for diabetes

has changed considerably over the last few years. There is a far greater

emphasis on trying to obtain " near normal " blood glucose levels - unless

advanced age or co-morbid disease renders tight control irrelevant.

Rick

[Guest guest]

Complications are not at all inevitable; nearly all of the complications

are associated with free radical damage. The wrong oils and high insulin

levels are a big source of that but other things can also be factored in.

> Up until fairly recently there was no such thing as " tight control " so

> anything the journals say about complications being inevitable won't wash.

> I still maintain that if we can consistently keep our BGs at non-diabetic

> numbers, we won't get complications.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?CMD=search & DB=PubMed

diabetes glutathione

diabetes peroxidation

diabetes oxidative

is the kind of thing to search for that information.

I used glutathione as an example because it's the most plentiful and

versatile, and it's created by your body, but all of the antioxidants

work together. As a bonus, they'll reduce damage potentially caused by

drugs too.

Duncan Crow

[Guest guest]

In a message dated 6/27/03 8:13:14 PM Pacific Daylight Time,

debbiesg@... writes:

>

> Twos don't loose there beta cell function. They just don't produce enough or

> the body doesn't use the insulin right. But they still work.

> Debbie

Debbie,

Usually, by the time we are diagnosed T2, we have lost about 80% of beta-cell

function. This is, in fact, what results in the diagnosis when our remaining

beta-cells are no longer able to produce enough insulin to overcome the

" insulin resistance " (IR) which is the underlying cause of T2 diabetes.

T2's can, and do progress to the full loss of beta-cell function resulting in

the need for injected insulin.

Now, in most cases, this progression is caused by the use of oral meds

(sulfonylurea-class, etc.) that force the remaining beta-cells to overwork and

produce insulin to overcome the IR. There is good evidence that, in the presence

of

high bg's, forcing beta-cells damages them.

And, IMHO, since we lost that 80% of beta-cells before diagnosis, and our

bg's were high, it is a logical step to conclude that, given enough time, they

are damaged in the presence of high bg's, whether forced or not. But you can

make your own conclusions on that.

All this is just another reason to do our best to maintain " normal

non-diabetic " bg's (70-110mg/dl & HbA1c 6.0% or less).

The 150mg/dl & HbA1c 7.0% goal that has been the edict of the medical

community for many years has just led to their conclusion that diabetes is a

progressive disease, complications will result, and inevitably the need for

insulin.

Recent extensive studies (DCCT & UKPDS) have shown that maintaining tighter

control with lower goals will result in less complication risk by some very

hefty percentages, and they didn't even achieve quite non-diabetic levels in

most

cases in the studies.

, T2, dx'ed 4/98, controlling with LC, average bg 100mg/dl, last HbA1c

5.6%

[Guest guest]

hi , what homeopathic did you take for fungus

[Guest guest]

A few questions/ Candi and

Candi - you write in the last sentence of your post that you have systemic

yeast. I would like to ask you - have you ever been diagnosed scientifcally

with a systemic fungus by biopsy/culture of the colon or bowel which was

positive? These are valid tests which can confirm the presence of yeast

in several parts of the body, and without them it is not likely that we can

know whether or not we suffer from systemic yeast.

Candi, During the time that you are doing the cleanses, aren't you also

taking other products to boost your immune system and or improve your over

all health? I seem to remember that you are on/use a number of things

(herbs, homeopathic remedies, probiotics - which by the way also bolster the

immune system and so on ). You have, I believe, even changed your diet

somewhat while on this path to a cure. I think it's possible that by

improving your vitamin and homeopathic intake alone - you could and probably

did improve your vulvar condition because you have boosted your immune

system. I guess what I'm saying is that, like most of us, you are trying

many things at once and cannot be sure which of those things (or combination

thereof) has begun the vulvar healing process for you.

, since one of the theory's out there concerning vulvodynia is that

it may well be an autoimmune disorder - it would be a good thing to eat as

healthy as possible and to take all the right vitamins and/or herbs for

boosting an immune system (with the proper research, of course). Please

read up on anything you decide to take to be sure how it will affect you

personally -for instance you may be a diabetic and unable to take a vitamin

herb that warns against use by diabetics, or you may be pregnant or have

ulcers or whatever. Read all labels carefully before you buy - herbs and

vitamins can be just as dangerous as prescription meds if you don't heed the

warnings.

Regards

Dusty

,

You will find that there are differing opinions here about yeast and VV. I

finally got my gyn to admit we can have fungal/yeast problems even though

every single one of our vaginal cultures come back negative. Yeast in the

system can cause health problems in the vulvar area as well as in the rest

of the body. My gyn said that even a yeast infection can cause inflammation

of the nerves and even f the yeast infection is gone, we can be left with

red, burning vulvas. Vulvodynia and vestibulitis are just two words that

describe a red, burning vulva and vestibule. Yeast can cause both, hormone

troubles can cause both, fibromyalgia can cause both and so on.

SNIP SNIP SNIP SNIP

[Guest guest]

In a message dated 6/6/04 9:35:52 AM, VulvarDisorders writes:

<< I dont know why people are so afraid of herbs and homeopathics, thats

what mankind lived on before all of these chemical drugs. >>

Probably because our life expectancy was half of what it is now.

Your systemic fungi wasn't diagnosed with a medical diagnostic test but

instead by the Q machine?

Debbie

Tiger

[Guest guest]

Oh Peggy, me too!

Sher; ipf 3-06; OR.Don't fret about tomorrow, God is already there!

[Guest guest]

I went to an Obama rally and saw him exhibit similar behavior to my friend's son who is wheelchair used and has a tracheotomy too. Obama was gentle, kind, held his hand and asked him how he was and if there was anything he needed. The compassion from his heart was real and moving!TonySubject: Re: To: sList Date: Wednesday, October 29, 2008, 4:28 PM

Hi,

I will pass this story along. tears filled my eyes when I read your story. thank you so much for sharing it with me. I hope you can somehow get a hold of a video tape of this. I am sure there is one out there! Yesterday I spent two hours in the voting line. Not for me, but in the hopes someone will finally at least try to make a difference. I have heard a few others stories about Mr. Obama, but not quite like yours. Please tell your daughter she def. had the angels around her! thank God she was not hurt!

AS I made my way to the voting polls, after weeks of "knowing" the facts..I still didn't know who to choose. I have never votes before. EVER. I hate to say it, but I went on pure instint this this , despite all the promises for either side. Then I pictured my sweet little girl, and tought of Obama. Thats how I decided on my vote. As strange as that may seem, it is def.s stories like yours that lead me to the polls to begin with, and made me cast my vote for the first time. Now all we can do is pray we make the right choice. Thank you so much for your story, and thank your daughter for me too,

Kriss

PS> You have to share this with more people, have you contacted the news about it yet? If not..I am telling you..please do it. Your daughter was not overlooked, I can only dream this too will one day happen for all our children suffering.

From: "Blanco, Sherry" <sblanco@browardheal th.org>To: sList@ yahoogroups. comSent: Wednesday, October 29, 2008 10:04:32 AMSubject:

Yesterday, October, 21, 2008, Barack Obama came to visit Lake Worth , at Palm Beach Community College . My daughter, who has spina bifida and is a wheelchair-bound paraplegic, attends school there. She was awaiting his arrival in front of a long line of other people. When he arrived, she was able to see him get out of his vehicle. The next thing she knew the crowd engulfed her and pushed her out of the way so they could get close to Mr.Obama. Somehow, with everything else Mr.Obama had on his mind at this busy time, he was attentive to the situation. My daughter said, "He (Mr. Obama) grabbed me from the crowd and pulled me away from all of the people who were pushing me out of the way. He hugged me and whispered in my ear, "When I become president things will be better for you." She told me that

she was so

overwhelmed all she could do was cry. Then he hugged her again, and personally wheeled her wheelchair into the building, gave her two t-shirts and instructed the secret service to assist her to the VIP section, which is where she sat to watch the speech. I called everyone I know and shared this touching story because it speaks volumes to me, much more than any campaign speech, commercial, or debate. We were lucky enough to have a personal experience with Barack Obama, the man...the human. I am so overwhelmed that he was perceptive enough to observe what was happening to my daughter (as she was being swallowed by the thoughtless crowd) and that he took the time to remedy the situation (even though he was running late that very busy day.) This gave me insight into the type of person he is in everyday life. He didn't have to go into the

crowd and save her, he could have pretended he didn't see her and go about his business, or he could have instructed the secret service to help her. But, he didn't. He took his time and made a difference.. .right there...right then...no fancy campaign speech, no media coverage...just his true essence, shinning through, with an incredible act of kindness that one Tuesday Morning. I felt compelled to share this story with others, so they too, can get a glimpse of the inner essence of this man. It is not often we have the opportunity to see the true nature of a person making a spontaneous choice in a difficult situation. Mr. Obama's choice lets me know that he is attentive to his environment, willing to get involved, compassionate, and will make a change...even in the seemingly small problems of everyday life. Barack Obama, won this our hearts, because of this seemingly simple act

of kindness to our daughter who was being swallowed by a thoughtless crowd. If he would stand up for her like he did, I now believe without ANY doubt he would stand up for this country and do the right thing. Mr. Obama you have my vote. You touched us beyond what I can express with mere words. Dawn Leacock Please share our story...pass it on.......... ......... ......... .- ------------ --------- --------- --------- -------Broward Health