Newly diagnosed

[Guest guest]

Hi:

Everyone has been so wonderful and supportive that I feel overwhelmed.

Tonight I was discussing loneliness with a newly widowed woman. I told her

that this is the first time that I truly do not feel alone since May 30, when

I was told that I had a motor neuron disease. So many of you wonderful people

have asked me to tell you something about myself.

In a nutshell I am a retired teacher who went back to school and became a

Clinical Social Worker. I work 2 days a week, I work as a Literacy volunteer

once a week, I go to physical therapy twice a week, active in my religion and

spend as much time with my 5 granddaughters as possible. I am working on

leaving the grandkids happy memories of me.

I ignored the lack of strength and foot dropping because I thought it had to

do with age and my being overweight. When I started to fall I contacted my

doctor who referred me to a neurologist. After 5 tests he referred me to a

neurologist who is very experienced in ALS and is doing research in the

field. He referred me to a specialist in ALS thinking that I might fit into

his research. After 17 tests I finally was coming to terms with the diagnosis

of ALS and had my house made wheel chair accessible. Then the doctor at

Columbia dropped his bombshell and said that it was not ALS, at least not at

this time, because I didn't meet all the criteria. So I'm at the point where

all tests have ruled out everything else....and that leaves PLS.

Right now I've been put back on Rilutek and Baclofen, swallowed my false

pride and just started to use a cane (with bright blue and purple flowers).

Decided that I want people to focus on my " outrageous " cane rather than

me!!!!!!!

So thanx to all of you who share your strength, experience and wisdom.

May the New Year be filled with the " Joys of Living " for you and all your

loved ones.

Bebe

[Guest guest]

Bebe:

Hello dear! My cane is purple paisley! Welcome to the Group! I'm sorry

about your diagnosis, but glad you're here. Sounds like you're just as wild

and crazy as me, Rita, Ronnie, and Jeanne Ann! Right Girls?

Happy New Year with much love from,

Laurel

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

just started to use a cane (with bright blue and purple flowers). Decided

that I want people to focus on my " outrageous " cane rather than

me!!!!!!!

*******************I LOVE IT!!

[Guest guest]

Bebe,

You asked about the PLS/HSP gathering on Long Island this April.

On Friday - Saturday, April 19 - 20th, the (about to be created

extremely soon) Spastic Paraplegia Foundation will hold its first

PLS/HSP Patient Conference. The conference will be held at the

Brookhaven Memorial Hospital in Patchogue, NY (Long Island).

On Friday, there will be an arrival dinner and social gathering.

The actual conference will begin on Saturday morning and continue

until mid-afternoon. The featured speaker will be Dr. Mark Gudesblatt

(neurologist) who will speak about the diagnosis and treatment of PLS

and HSP. A cocktail gathering/dinner will wrap up the conference.

Hotel rooms will be set aside in a nearby hotel.

All of those interested in attending should contact Delevan at

clanddelevan@... .

Mark Weber

> Hi:

> This " Newly Diagnosed " lives on Long Island and would be interested

in more

> information regarding the meeting being held here in April.

> Thanx

> Bebe

[Guest guest]

Dear Laurel:

I may get a red paisley cane to match the rest of my wardrobe, guess I will

have to make sure that we don't go to the same party. I went to an open

house today and it was the first time that friends saw me using a cane. The

fantastic part was they could only focus on the outlandish cane. Maybe the

next step is to get matching hats!

Happy New Year.

Bebe

[Guest guest]

You are way too cool Bebe!!!!

Have you read " When I Get Old, I Shall Wear Purple? "

It's one of my favorite poems, and the rest of the book is

fabulous! Gosh, if we meet in May, along with Rita, JeanneAnne, and

Ronnie, you never know what may happen!

Right girls?

Laurel

Re: Newly Diagnosed

> Dear Laurel:

> I may get a red paisley cane to match the rest of my wardrobe, guess I

will

> have to make sure that we don't go to the same party. I went to an open

> house today and it was the first time that friends saw me using a cane.

The

> fantastic part was they could only focus on the outlandish cane. Maybe

the

> next step is to get matching hats!

> Happy New Year.

> Bebe

>

>

>

>

>

[Guest guest]

Hi, I saw this on the livingwithALS list. Most of the

info can be applied to PLS. I think there are some

really good points made here.

Recommended Steps after Diagnosis

*If you suspect you have ALS but are not diagnosed

yet, look into the

possibility of getting additional term life insurance

and/or long

term disability insurance.

*ALS is difficult to diagnose. If you were not

diagnosed by a

neurologist who specializes in neuromuscular diseases,

request a

referral to one for a confirmation of the diagnosis.

*Come to grips with the fact that ALS is bigger than

any one person

or family. You will need help. There is a fine line

between being

proud and being stupid. There are agencies and

organizations out

there whose specific purpose is to help. Find them and

take advantage

of what they can offer.

*Register with the Muscular Dystrophy Association

().

Request information about services and publications

available.

*Register with the ALS Association ().

Request

information about available services and publications.

*Contact your medical insurance provider and request

that you be

assigned a case manager to be your primary point of

contact.

*Contact an attorney who specializes an elder care law

and make an

appointment to discuss legal and financial planning

recommendations.

*If you served in the military, contact the Department

of Veteran

Affairs () about eligibility for health,

vocational

rehabilitation and disability programs and services.

*If you are employed, contact the Oregon Vocational

Rehabilitation

Division () and request information about

available

services.

*If you don't have a computer and internet access,

consider getting

one. There is a wealth of information and support

available on the

internet.

*If you can, participate. Research ALS on the

internet, attend an ALS

support group meeting, join the ALS association, go to

advocacy day,

write your congressional delegates. Be active. Do what

you can. Do

not expect others to do it for you. Being active,

involved and

participating is the best medicine you have.

*When the time comes, use the cane, walker, wheel

chair to conserve

energy and protect your body. The last thing you need

is a broken

leg, arm or head. Besides, when you fall, it hurts.

*And finally, be careful with alternative treatments

that claim to

slow down, stop or cure ALS. If the claims were true,

they would be

frontpage news. Our community is very desperate and

there are too

many individuals that would be happy to treat your

wallet. It appears

the magic price for a cure is $15,000. No money-back

guarantee

though!

---------------------------------------------

Steve has ALS (Lou Gehrig's Disease).

You can learn more at www.alsoregon.org.

---------------------------------------------

=====

Thomson, Solana Beach, CA

www.als-pls.org

www.geocities.com/mdmfoo/pls.html

__________________________________________________

[Guest guest]

In a message dated 4/11/2003 7:26:02 PM Eastern Daylight Time,

cabc65@... writes:

> What he should and should not

> eat is very confusing. He really was only told to " cut out the

> carbs " . Any help is much appreciated

Hi and welcome to the group.

Your hubby needs to talk to a diabetes educator or a dietitian. Also, if

diabetes education classes are available, they would be beneficial. Diabetes

affects each of us differently. Some of us can eat more carbs than others.

The best way to know what can and cannot be eaten is by testing two hours

after eating. Did the doctor write a prescription for a glucose meter?

Foods that we should all stay away from are the starchy white foods -

potatoes, rice, noodles, white bread, etc. Exercise is one of the best ways

of lowering blood glucose (bg's).

The Joslin Diabetes Center has a lot of good information. Here is their

website.

<A HREF= " http://www.joslin.org/main.shtml " >http://www.joslin.org/main.shtml</A>

Ask any questions you may have. We are here to help in anyway we can.

Eunice

[Guest guest]

In a message dated 4/12/2003 10:44:35 AM Eastern Daylight Time,

seleblanc@... writes:

> but potatoes have very little effect on me

Hi Steve,

I'm glad you posted this. I can eat potatoes also. I was in another group

several years ago. I had posted my Thanksgiving dinner which included

potatoes. After dinner my bg's were something like 89. I was literally

" racked over the coals " for eating potatoes. Needless to say, I did not stay

with that group very long.

Eunice

[Guest guest]

If your medical plan offers diabetic classes, go to them. This will help in

answering you questions.

As you will learn, diabetes is a per person genetic issue. What one person

can eat, another can't.

My only advice is to have balanced meals. More fiber, less carbohydrates.

I started off with 2 - 3 oz of protein at each meal, egg or cheese counts as

1/2 a serving, 1 serving of fruit (1/2 apple or 1/2 banana / or some

cantaloupe), 1 - 2 servings of carbohydrates (2 slices of bread count as 2)

with 2 - 3 servings of fiber (celery, spinach, cabbage, broccoli,

cauliflower). After eating wait 2 hours and test. If the numbers are high,

think about what you ate and what may have had carbohydrates, remove that

from the next meal and do the same.

Actually it's going back to basics. The food pyramid.

FYI.. It took me several meals to actually pin down that rice causes my

blood glucose to rise, but potatoes have very little effect on me.

Newly diagnosed

I am looking for help. My husband has been newly diagnosed with type

2 diabetes. What do I need to know. What he should and should not

eat is very confusing. He really was only told to " cut out the

carbs " . Any help is much appreciated.

[Guest guest]

Thanks Eunice. He is really trying to avoid the dibetes education

class. I think he is afraid of being the youngest person there (he

has some major age hangups, long story there). He has the blood

glucose meter (Shocked that it wasn't covered by BCBS of MD). I

have encouraged him to test very often until he learns how different

foods will effect him and what he feels like with elevated or low

blood glucose. He has been exercising daily. Also, if blood glucose

is high, he will get on the bike or treadmill. He really wants to be

able to get off meds and manage through diet. All the more reason to

find a good RD.

I have tried to get him an appt for an endocrinologist but have yet

to find one that can see him before July. (He has only been seen by

the nurse practioner at our family " doctor's " office)I will feel

much better after he begins seeing an endocrinologist.

Well, I am rambling. Thanks for your quick response.

> In a message dated 4/11/2003 7:26:02 PM Eastern Daylight Time,

> cabc65@y... writes:

>

> > What he should and should not

> > eat is very confusing. He really was only told to " cut out the

> > carbs " . Any help is much appreciated

>

> Hi and welcome to the group.

>

> Your hubby needs to talk to a diabetes educator or a dietitian.

Also, if

> diabetes education classes are available, they would be

beneficial. Diabetes

> affects each of us differently. Some of us can eat more carbs

than others.

> The best way to know what can and cannot be eaten is by testing

two hours

> after eating. Did the doctor write a prescription for a glucose

meter?

> Foods that we should all stay away from are the starchy white

foods -

> potatoes, rice, noodles, white bread, etc. Exercise is one of the

best ways

> of lowering blood glucose (bg's).

>

> The Joslin Diabetes Center has a lot of good information. Here is

their

> website.

> <A

HREF= " http://www.joslin.org/main.shtml " >http://www.joslin.org/main.sh

tml</A>

>

> Ask any questions you may have. We are here to help in anyway we

can.

>

> Eunice

>

>

>

[Guest guest]

same here, withthat diabetic support group. it is still around. i joined

looking for some support, only to get attacked because i use Equal 'they'

say that it is bad and toxic for you and your body, yet, there has been no

real definitive proof of it. the 'tests' they do, cannot be repeated with

the same results.

i found out that the people perpetuating this 'report' are really sick and

have seem to have some sort of vengence against Equal and the drug company

that produces it. much of their information they provided, has been

disproved by other reputable sources.

i was hesitant to join another support group for diabetes, because of this.

however, i am glad that i did. the information here is a lot better and

more supportive than what i have encountered before.

i am a type 2 diabetic, requiring insulin. have been diabetic for about 16

+ years. only within the past two years, have i needed to add insulin to my

medicaton regime, i think.

gayle

Re: Newly diagnosed

> In a message dated 4/12/2003 10:44:35 AM Eastern Daylight Time,

> seleblanc@... writes:

>

> > but potatoes have very little effect on me

>

> Hi Steve,

> I'm glad you posted this. I can eat potatoes also. I was in another

group

> several years ago. I had posted my Thanksgiving dinner which included

> potatoes. After dinner my bg's were something like 89. I was literally

> " racked over the coals " for eating potatoes. Needless to say, I did not

stay

> with that group very long.

>

> Eunice

>

>

>

[Guest guest]

The best thing you can do is get a copy of Dr. Bernstein's book. Find out also

if there is a Diabetes Education class in your area; try the department of

health, the largest local hospital, and any colleges or universities with Health

Sciences programs.

Newly diagnosed

I am looking for help. My husband has been newly diagnosed with type

2 diabetes. What do I need to know. What he should and should not

eat is very confusing. He really was only told to " cut out the

carbs " . Any help is much appreciated.

[Guest guest]

According to yesterday's paper, Type II's as young as 8 or 9 are showing up.

Re: Newly diagnosed

Thanks Eunice. He is really trying to avoid the dibetes education

class. I think he is afraid of being the youngest person there (he

has some major age hangups, long story there).