new member

[Guest guest]

Kim-

Welcome... welcome... welcome! It's always so much fun to meet new

" family members " . Your group sounds like a hoot! My little Aubrie is 2

yrs old. Her big brother is also named . He's 8 and he loves her

very much. I'm amazed at how good he is with her -- letting her get

into his stuff, sharing his food, letting her play with him and his

friends... He is compassionate about the nasty stuff she has to deal

with -- doctor visits, medicines, therapies... Fortunately, we're not

dealing with any very serious medical issues right now. Our biggest

problems are weight gain, tear duct blockage, and ear infections. Minor

stuff compared to oxygen, heart surgeries, etc. slept with us

until I was pregnant with Aubrie. Now Aubrie won't sleep with us -- she

wants her crib. I miss that cuddle time and waking up to that little

cutie. I'm looking forward to getting to know you and your family more!

Michele W

mom to Aubrie (25 mos) CHaRgE and (8 yrs), wife to DJ, in IL

west@...

[Guest guest]

Attn:

I know you

We have written back and forth a few times by mail when I firsr joined the

Charge Foundation.

Thanks for the welcome.

angie and joel fice (alex 6, rachel 5, ryan 3 and (charger) 2 years)

[Guest guest]

Angie,

Welcome to the list, glad to have another Canadian aboard!!! Hope you enjoy it here in CHARGEland...

Mom to Kennedy 2yr old CHARGEr, 10, 8, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716ICQ #1426476

New Member

From: bearpawzx4@... Dear members,HelloI am a new member. My name is Angie. I am married with four children (ages 6, 5, 3 and a 2year old(Charger)).Feel free to connect me.thanks

For information about the CHARGE Syndrome Foundation or to become a member please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org

[Guest guest]

Vicki wrote:

<< Hi, Roseann, welcome to the list ... >>

Hey, ? This one is a " keeper. " Vicki has concisely summed up the core

of our approach.

Susie

[Guest guest]

Vicki wrote:

<< << This list is particularly focused on low-carbing. >>

And Meniowl responded:

<< Uh oh, before the flames start shooting.....I think it would be better to

say

this list focuses on lower carb. 225 carbs is a lot of carbs! >>

I always ask diabetics to focus on the nature of their disease. Is this

*not* a disease of carbohydrate intolerance? Diabetes is a " disease " of

carbohydrate intolerance. Once we are recognized, then it becomes our chore

to reduce carbohydrates, in order to improve our health. If you do not

recognize this reality, it is time to do some research. The internet is

wonderful for this.

The average American carbohydrate intake is 300 grams daily. Ketogenic diets

recommend 20-40 grams daily ... but those recommendations are only

*temporary* ... I emphasize that! If you think you are supposed to eat 20-30

grams of carbs daily for the rest of your lives, please go back and re-read

your books. Please do not load up on animal fats, month after month.

Regular exercise cannot be emphasized enough. I have already lost five

pounds this week, humping boxes to the new house. I really miss being able

to work out daily. (My " horse wreck " shoulder is still clunking and falling

out of its socket.) You do not even have to join a gym if that option is

unavailable. I bought a metronome and discovered that the music I enjoy the

most for workouts is around 120 beats a minute, so I recorded some tapes and

I work out on my own front porch with eight-pound weights. And once we get

set up in the new place, I hope to add a full set of weights. I really enjoy

the workouts, and the feeling of muscles!

I try very hard to get people to focus on " the problem " . We diabetics are

the best authorities on this disease. We deprive ourselves; we stick

ourselves; we worry ourselves ... If the " white coats " had more wisdom, they

would be listening intently to us. But for now, we at least have the comfort

and wisdom gleaned from listening to each other - thanks to the internet!

Susie

[Guest guest]

Welcome . Your going to enjoy this group, they always have lots of

great ideas and recipes to share. Way to go on losing 20 lbs already.

Shanda

>

>Reply-To: Serious-Weight-Watchers

>To: <Serious-Weight-Watchers >

>Subject: New Member

>Date: Thu, 29 Nov 2001 09:15:33 -0600

>

>Hi everyone!

>

>My name is , and I have just joined your group. I've been doing

>Weight Watchers since June and have lost 20 pounds. I've got about 40 more

>to go to get to goal. I've hit the point where I need to get more serious

>and start following the program more diligently again, so I thought this

>group would be a good source of informatin and inspiration.

>

>I look forward to sharing in your journeys.

>

>Sincerely,

> Cisneros

>Austin, Texas

>

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

[Guest guest]

Thank you !

Hugs,

Kim

> > Kim---Just My Opinion

> >

> > I submit to you that it was likely that it was the hidden

thyroid

> problem

> > causing the fibro, weight gain, and may have even cause the

> problems that

> > led up to your hysterectomy. I don't know your history, but

this

> WAS the

> > case with me, I'm sure of it now. I believe that the loss of

> progesterone

> > is ONE factor in causing thyroid problems, though there are

many,

> sometimes

> > all combined.

> >

> >

> >

> > Re: new member

> >

> >

> > > Thanks ,

> > >

> > >

> > > I also have Fibromyalgia and suffer from chronic pain, so I'm

sure

> > > this contributed to my Thyroid problem.

> > >

> > > I had a Hysterectomy Two years ago and it seemed to make the

> Fibro ,

> > > Fatigue, and weight gain worse.

> > >

> > > Hopefully once the Thyroid gets under control the Fibro will

> follow.

> > >

> > > I look forward to getting to know you and all the other

members.

> > >

> > > Thanks again,

> > > Kim

> > >

> > >

>

>

>

[Guest guest]

You have really been thru the wringer. ((((Hugs)))

I can prove the genetic thing in the fact that I have 4 birth children, 3

girls and a boy, and the 2 oldest girls and myself all have Hashimotos and

destroyed thyroids. The youngest girl and boy seem to have none of these

problems. You will find that most of the people on this site have a family

thing.

Re: new member

> ,

>

> Thank You so much for that information.

>

> The only results I have on my blood tests are that my Free T4 is 1.19

> with the normal ranges being 0.89-1.80 amd my TSH is 7.988 with

> normal ranges being between 0.350-5.500. I will be getting the full

> report in the mail shortly.

>

> I am no stranger to health problems though. I had a rare form of

> Ovarian Cancer at 18. At the time one Ovary was removed and I was

> treated with chemotherapy.

>

> After that I suffered with Endo for years and had several surgeries

> and hormone treatments in order to spare my Uterus. Two years ago I

> was diagnosed with Adenomyosis and my Uterus was removed. I still

> have one Ovary but it's not working as well as it should. I know this

> because I sometimes have hot flashes and terrible mood swings.

>

> I was also in a car accident in 1998. this resulted in Herniated

> Disks in my Back and Neck, as well as Fibromyalgia and chronic pain.

> I have had both Knees and Wrists operated on as well. I am currently

> on disability due to this. I take Ultram, Baclofin, Ambian, and

> Prevacid on a daily basis.

>

> My grandmother had a Goiter. I don't know if Hypothyrodism is

> hereditary.

>

> I will post my complete blood work as soon as I recieve it. I will

> look into the other test you mentioned as well. Thank You.

>

> Oh and I forgot to mention my age. Today is my birthday, I am 38

> years young!

>

> Thanks Again,

> Kim

>

>

>

>

>

>

[Guest guest]

Thank You !

Hugs,

kim

> You have really been thru the wringer. ((((Hugs)))

> I can prove the genetic thing in the fact that I have 4 birth

children, 3

> girls and a boy, and the 2 oldest girls and myself all have

Hashimotos and

> destroyed thyroids. The youngest girl and boy seem to have none of

these

> problems. You will find that most of the people on this site have

a family

> thing.

>

>

>

>

> Re: new member

>

>

> > ,

> >

> > Thank You so much for that information.

> >

> > The only results I have on my blood tests are that my Free T4 is

1.19

> > with the normal ranges being 0.89-1.80 amd my TSH is 7.988 with

> > normal ranges being between 0.350-5.500. I will be getting the

full

> > report in the mail shortly.

> >

> > I am no stranger to health problems though. I had a rare form of

> > Ovarian Cancer at 18. At the time one Ovary was removed and I was

> > treated with chemotherapy.

> >

> > After that I suffered with Endo for years and had several

surgeries

> > and hormone treatments in order to spare my Uterus. Two years ago

I

> > was diagnosed with Adenomyosis and my Uterus was removed. I still

> > have one Ovary but it's not working as well as it should. I know

this

> > because I sometimes have hot flashes and terrible mood swings.

> >

> > I was also in a car accident in 1998. this resulted in Herniated

> > Disks in my Back and Neck, as well as Fibromyalgia and chronic

pain.

> > I have had both Knees and Wrists operated on as well. I am

currently

> > on disability due to this. I take Ultram, Baclofin, Ambian, and

> > Prevacid on a daily basis.

> >

> > My grandmother had a Goiter. I don't know if Hypothyrodism is

> > hereditary.

> >

> > I will post my complete blood work as soon as I recieve it. I will

> > look into the other test you mentioned as well. Thank You.

> >

> > Oh and I forgot to mention my age. Today is my birthday, I am 38

> > years young!

> >

> > Thanks Again,

> > Kim

> >

> >

> >

> >

> >

> >

[Guest guest]

Welcome to the list . Looking forward to getting to know you. This

is an amazing group of people here. A great source of information and

support. Personally, I don't know where I'd be without these wonderful

people. Glad to have you aboard, but sorry it's because of Fibromyalgia.

welcoming hugs,

Norah Bleazard - Burlington, Ontario Canada

www.bleazard.net ~ www.janorlites.com

E-MAIL=

norah.fibroyahoo@...

CHAT=

MSN = black_dak_98@...

Yahoo = drazaelbn

AIM = black98dak

ICQ = 105346330

Fibromites_Fighting_Weight:

http://groups.yahoo.com/group/Fibromites_Fighting_Weight

http://fibromites.ath.cx

wrote:

> Hi everyone,

>

> I just found and joined the group today. What a blessing!!! I was

> diagnosed with Fibromyalgia a little over a year ago, after two years

> of severe pain that the doctor's kept telling me was all in my head. I

> have been scanning through some of the recent post and it is amazing

> and comforting to see that so many of the problems I have been

> experiecing in the past few years in those posts.

>

> For just a little fyi about me, I'm 39, a single mom of two teenagers

> and I live in south Arkansas.

>

> Until later,

>

[Guest guest]

My name is Donna and I am glad to have found this group. I am in mymid-40's, was diagnosed with bronchiectasis about 15 years ago. I aminterested to know what daily routines others with bronchiectasisfollow for their self-care -- specific to the disease, that is! Thanks in advance for your messages.

Hello Donna

My name is Sandie. I live in MD. I'm 57.

My primary dx is Alpha1 Antitrypsin Deficiency. This is a genetic liver/lung disorder. We're comparable in lung symptoms to Cystic Fibrosis. however, our disorder begins in the liver and manifest to our lungs, if we survive to adult hood, and arent born liver symptomatic.

My secondary dx is bronchiectasis. I was dx'd 3 years ago and it's getting worse for me.

My daily routine is my neb..that helps to open me up.

I use the VEST at least once a day..I try for 2 times/day .

I use Guafinesin to help loosen the tacky crap in my lungs <expectorant> and bring it up easier. This is simply Tussin. I get mine at Walmart. A big generic Walmart brand costs me only about 3 bucks.

And I live on water..it goes w/me everywhere I go

Stay in touch

Sandie

A1ATD ZZ

MD

Never look down on SomeoneUnless you're willing to help them UpSee what's new at AOL.com and Make AOL Your Homepage.

[Guest guest]

Hi, Donna. I'm Anne, 49 years old, diagnosed earlier this year.

I take Advair twice a day, which does help. I know this because if I

skip a couple of doses, I cough harder and more frequently. Other

than that, I just cough. I now keep tissues handy at all times

(yuck). I also use sugar-free cough drops, mostly out of habit

because I've been coughing for years and am used to having a pocket

full of them.

As the disease progresses, I'm sure I'll be incorporating some of the

solutions used by others on this list.

-Anne

>

> My name is Donna and I am glad to have found this group. I am in my

> mid-40's, was diagnosed with bronchiectasis about 15 years ago. I am

> interested to know what daily routines others with bronchiectasis

> follow for their self-care -- specific to the disease, that is!

>

> Thanks in advance for your messages.

>

[Guest guest]

Hi there

This is interesting . What is MAC and MAI? , I haven't been able to find

anything on either.

Thanks

>

>

>

>

> Hello

>  

> I have recently been diagnosed with this problem and am

> keen for the support of a group.  Can someone please

> confirm that this group originates in Australia.  Thank

> you.

>  

> Can someone also assist with with some ideas on the

> following

>  

> My problem seems to be caused by MAC.  Does someone else

> have this and if so, what specific problems has this caused.

>  

> I am experiencing considerable hair loss and this is

> causing me more distress that the bronchiectasis.  Has

> anyone else had this problem and if so, how have they dealt

> with it?

>  

> Is having hot flushes and sweating a feature of this

> problem or is it solely menopausal.

>  

> Thanks

> Beth

[Guest guest]

Hi ,

If you enter mac disease in the google or other search engine box many sites will come up including the CDC. Here is one:

http://www.maclungdisease.org/index.php?option=com_content & task=view & id=32 & Itemid=55

Same goes for mai enter mai disease. Here is one:

http://www.lungdoc.md/PatientEd/MAI.htm

Stay well and happy,

Nan

Re: New member

Hi thereThis is interesting . What is MAC and MAI? , I haven't been able to find anything on either.Thanks > > > > > Hello> > I have recently been diagnosed with this problem and am> keen for the support of a group. Can someone please> confirm that this group originates in Australia. Thank> you.> > Can someone also assist with with some ideas on the> following> > My problem seems to be caused by MAC. Does someone else> have this and if so, what specific problems has this caused.> > I am experiencing considerable hair loss and this is> causing me more distress that the bronchiectasis. Has> anyone else had this problem and if so, how have they dealt> with it?> > Is having hot flushes and sweating a feature of this> problem or is it solely menopausal.> > Thanks> Beth

[Guest guest]

Hi ,

It stands for Mycobacterium Avium Intracellular (MAI), a cousin to TB however it is not contagious.

Eileen-FL

> > > > > Hello> > I have recently been diagnosed with this problem and am> keen for the support of a group. Can someone please> confirm that this group originates in Australia. Thank> you.> > Can someone also assist with with some ideas on the> following> > My problem seems to be caused by MAC. Does someone else> have this and if so, what specific problems has this caused.> > I am experiencing considerable hair loss and this is> causing me more distress that the

bronchiectasis. Has> anyone else had this problem and if so, how have they dealt> with it?> > Is having hot flushes and sweating a feature of this> problem or is it solely menopausal.> > Thanks> Beth

[Guest guest]

How many of us have MAC or MAI with our

bronchiectisis? I for one do. And I think Jan, Joy, beth and Eileen.

From Joan

From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of Eileen Bauer

Sent: Tuesday, August 26, 2008

9:59 AM

To: bronchiectasis

Subject: Re: New

member

Hi ,

It stands for Mycobacterium Avium

Intracellular (MAI), a cousin to TB however it is not contagious.

Eileen-FL

>

>

>

>

> Hello

>

> I have recently been diagnosed with this problem and am

> keen for the support of a group. Can someone please

> confirm that this group originates in Australia. Thank

> you.

>

> Can someone also assist with with some ideas on the

> following

>

> My problem seems to be caused by MAC. Does someone else

> have this and if so, what specific problems has this caused.

>

> I am experiencing considerable hair loss and this is

> causing me more distress that the bronchiectasis. Has

> anyone else had this problem and if so, how have they dealt

> with it?

>

> Is having hot flushes and sweating a feature of this

> problem or is it solely menopausal.

>

> Thanks

> Beth

[Guest guest]

kat,

i am sorry you had to find us but welcome to our family, and yes you are part of

our family now, many of us have been here for years despite the deaths of our

loved ones to help others on this terrible journey that ther are NO rules what

is a Godsend to one patient is worthless to another patient, some patients live

a long time, even after diagnosis some like my father didnt, but his was

complicated by shattering his hip and having surgery, looking back i would NOT

have had the surgery and when he reinjured it we said no  more surgery. 

feel free to vent, ask questions, yell,cry, scream and laugh whatever it takes

to help you, no topic is taboo we discuss the sexual habits or inappropirateness

of our loved ones, my dad was one of teh worst in thsi, others have little or no

probelms  so the rule is there are no rules, there is no set of drugs that works

for everyone there are some that seem to cure some yet for others make the turn

for the worse.  so with any new medicine you go low dose and slow in changes,

the lbd'ers cannot take much change and if you do more than one at a time you

cannot tell which is the one that worked and which didnt. you have to keep a

journal, include on that journal i recommend one of those one day a page

calendars gives you lots of room to write whatever needs to be reembered. write

medicine changes, reactions to those changes, including appetite, thirst,

attiutde, bladder /bowel incontinence and changes of abilities. good bad and

indifferent, beucase you

may eventually or the doctor may eventually see patterns,  also on the days fo

teh doctor appts write your quetsions you want ot ask him/her so you cant fake

it with you and not forget anything, i did that for dad and it was wonderful, we

found out that whenever donnie went out of town that daddy went ballistic,

eventhough iwas his daughter, he lvoed donnie and donnie would go visit his

family in tennessee and daddy would miss him terribly.  well, if we told daddy

that donnie would be home friday on thrusday dad would treat me like dirt under

his feet, he would yell and scream at me and throw things at me and give me the

worst of his treatment well if he would talk to donnie then and calm down so we

got smart we would tell daddy he would be home saturday and he would come home

firday and we would avoid the day from satan. you need to play in theri world

they no longer play in ours  good luck and hugs sharon

Subject: New Member

To: LBDcaregivers

Date: Tuesday, August 26, 2008, 5:47 AM

Hi All,

I have kinda been observing how things work. Here is my intro:

My Mom has been seeing a Neurologist since her hemmoraghic brain stem

stroke in Feb '06. Zolpidem was given during her stay in rehab for a

week after the stroke. She was misdiagnosed with side effects from

medicines and low vision (which causes hallucinations) . She is also

dealing with double vision and balance issues from the stroke. 20

months after the stroke, she had learned to walk and do the stairs

both with assistance. At 86 years young, she told her

Neurologist, " I'm an old lady now. I'm 86 you know. " Clonazepam was

considered the wonder drug that helped control her anxiety and

uncontrollable movements of her left leg allowing her to walk with

little assistance. She has had care 24/7 since her stroke and thinks

I hold her back by not allowing her to walk by herself, " And when are

you going to let these girls (caregivers) go and leave me alone? "

In 10/07 her complaint was a man singing in her head. He didn't have

a bad voice. He just sang the same songs over and over. Neurologist

started with Seroquel then switched to Zyprexa. Mom had problems

walking on these meds and was trying to perform in rehab for her

stroke in order to qualify for more rehab. I chose rehab over the

singing in the head. At this time we could explain away the

hallucinations. She had several bouts with pneumonia all cured at

home with antibiotics. Levaquin was ruled a contributor to her drug

induced hallucinations. A neuropsych eval in 2/08 showed lewy body

disorder without dementia. Neurologist put her on Namenda in 4/08.

She suggested a Geriatric Psychiatrist, who took her off Namenda and

put her on Abilify and Exelon. No mention of the Clonazepam by the

Psychiatrist. I worked to get the dosage up on the Clonazepam to

help with the tremors in her left shoulder and uncontrollable kicking

of her left leg which seemed to be getting stiffer and she complained

that her foot was stuck on the floor (both stroke or so I thought).

I then started the Abilify. I received a call at work that an

ambulance had been called by daycare because my Mother was

unresponsive. The Psychiatrist told me no way the Abilify would

affect her walking. ER said she was over medicated. Hmmmm

Stop Abilify; lower Clonazepam; call Psychiatrist. He pats me on the

back. Now he says Clonazepam is not good for someone hallucinating.

Thanks. Neurologist confirms I should follow the Psychiatrist now

that she is diagnosed. Note to self: time to accept clinical

diagnosis of LBD any more proof will come in symptoms...until death.

Today she is on her second week without Clonazepam. I always hated

that drug. It's not covered by any insurance. Look forward.

Prozac, Abilify, Exelon are the mix of the moment.

Kat

Caregiver for Jane, Mother, 86, diagnosed 3/08 LBD

[Guest guest]

Given I fall into this category, I'd like to hear more from others on it. My history is that I am 57 y/o, postmenopausal and with an otherwise unremarkable health history - throughout my life (up to now that is) I have had few colds, flu or viruses. It appears there has been limited research into this area, largely because it is not contagious. More info on affects and managing it would be great.

Beth

Re: New member

Hi ,

It stands for Mycobacterium Avium Intracellular (MAI), a cousin to TB however it is not contagious.

Eileen-FL

> > > > > Hello> > I have recently been diagnosed with this problem and am> keen for the support of a group. Can someone please> confirm that this group originates in Australia . Thank> you.>

> Can someone also assist with with some ideas on the> following> > My problem seems to be caused by MAC. Does someone else> have this and if so, what specific problems has this caused.> > I am experiencing considerable hair loss and this is> causing me more distress that the bronchiectasis. Has> anyone else had this problem and if so, how have they dealt> with it?> > Is having hot flushes and sweating a feature of this> problem or is it solely menopausal.> > Thanks> Beth

[Guest guest]

Laurie F,

Welcome!

(I am doing to distinguish you from other Lauries who have been or are here.)

Your Mom's early onset is very hard on your family, I am sure.

There is an " early onset " dementia group with one of the Alzheimers groups that

I get a newsletter from and I will find it and forward it to you personally.

You are so right to be concerned about the driving issue. I have read stories

of those who have driven across several states and found themselves lost. We

haven't had that here but we often advise to get the keys away from our LOs very

soon. Several of our members have had car incidents and they may share those

with you. Fortunately no one has gotten hurt, but that can happen so easily.

Sometimes MDs can contact Licensing Dept and they can get drivers license

revoked and it still may not stop the driving.

One of our members had a " kill switch " put on her car so her husband couldn't

start it as he wouldn't give up his keys. It didn't cost much and he couldn't

figure out how it worked but she could and she could still drive. Then we don't

have to fight about it and can tell some " loving lies, " like " guess the car had

a glitch. "

Hugs,

Donna R

Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in

a nh.

She was almost 89 when she died in '02. No dx other than mine.

new member

Greetings,

I am writing here because my mother was given a preliminary diagnosis of LBD.

She is just 58 as of a few weeks ago. She lives with my father, I am 20 min

away and my brother is 3 hours away. She started with hearing voices in the

house, and thinking the house was tapped. (backing up I honestly believe she

has undiagnosed and untreated depression since my birth) She than went on to

lose words in her sentences. She has been on abilify to take care of the

psychosis, and now that we are thinking LBD, we are thinking it hass hastened

the parkonisms that she has now. I am going to talk to her neurologist on

monday. He changed her to seroquel, but I am wondering if we should not scale

it back or try to stop it for awhile. She has been at the same job for 38

years. They had to reduce her job to bagging groceries from stocking shelves.

We found out yesterday she is not doing that well now. This has all been over a

year and a half that the psychosis started(crisis) and abou

t 3 years since she started making small comments about the house being bugged

and paranoia. I am almost done my degree in mental health and human services,

and a minor in geriatric human services. Just in time I guess, ugg!

She was still driving as of yesterday, but I am worried about it now. I am

worried she will not beable to make a judgement call. We had an EEG with major

slowing in the brain areas, we are having an MRI next week (we had on last march

showing no changes), we are also going to see a neuropsych and having a PET???

We are in Maine, and I am looking for a geriatric specialist. I am not sure

that is even the way to go.

Thank you all for being here, and also thank you for listening to this.

Laurie French

" There is much more to rescue than handling the dog. There are calls to be

made, miles to drive, paperwork to fill out, records to keep. It all costs

money. " ~Laurie French

For animals needing homes: www.petfinder.com

www.neorescue.net

http://www.mastiffrescue.org/

_________________________________________________________________

See how Windows connects the people, information, and fun that are part of your

life.

http://clk.atdmt.com/MRT/go/msnnkwxp1020093175mrt/direct/01/

[Guest guest]

Welcome Heidi,

How great for Sherry to have a support person like you in her corner.

Hugs,

Donna R

Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in

a nh.

She was almost 89 when she died in '02. No dx other than mine.

Re: new member

thanks for the welcome and I'm happy to listen sometimes its the best I can

do

Heidi

Mz T sun conure

ie aka bUg BuG tiel

http://shops.ittybittybirdiebites.com/Heidi/

www.mywellnessoils.com/heidikeitz.htm

That you may retain your self respect,it is better

to displease the people by doing what

you know is right,than to temporarily please

them by doing what you know is wrong

J.A. Boetcker

Re: new member

> Welcome Heidi, I'm glad you're here .

>

> Heidi is indeed a close friend of mine - so close in fact that I file her

> emails in my " Family " folder - lol. She gets to listen to me talk about

> my

> mom both on the phone and in emails, lucky girl .

>

> His,

> Sherry

> www.owly.net

> daughter of , (mis?)diagnosed with AD in 2005, descent slowed by

> Aricept; diagnosed with LBD March 2008, in a wonderful NH 1/2 mile from my

> house. We're learning to live with Lewy...

>

> ----- Original Message -----

>

>> I am a close friend of Sherry's and she has been letting me know how

>> things are going with her mom so I asked if she thought I could join

>> the group as well.I am an LPN currently working in pediatric home

>> care , have had years working in nursing homes both as a certified

>> aide and as a liscenced nurse.There is a possibility that I my go

>> back to geriatric nursing in the future and thought it would be a

>> good thing to be up to date as it were on diseases, etc of the

>> elderly.For the most part I'll probably be a lurker at least for a

>> bit,working nights and dealing with fibromyalgia sometimes all I do

>> is get my emails and skim them til I have time to read,lately I have

>> had alot of stress in my life so if I focus on others problems maybe

>> I can calm down a bit too.

>> So thanks for letting me be apart of this group and please don't let

>> me being in the medical profession worry you ,I'm not here to

>> judge,tell on you or anything like that ,I'm here to learn and offer

>> what support I can

>

>

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

>

> Welcome to LBDcaregivers.

>

>

[Guest guest]

Dear Laurie,

I am sorry to have to welcome you to our group. It sounds like you

aer doing everything right. My Mom had a cat or pet scan a few years

into this disease (I don't remember which - my brother took her) and

the result was " normal " signs of aging.... in other words, they

didn't see what was going on. Hopefully now, the docs are better

able to get a handle on what's happening.

My good wishes and thoughts are with you,

Helene in NY

>

>

> Greetings,

> I am writing here because my mother was given a preliminary

diagnosis of LBD. She is just 58 as of a few weeks ago. She lives

with my father, I am 20 min away and my brother is 3 hours away. She

started with hearing voices in the house, and thinking the house was

tapped. (backing up I honestly believe she has undiagnosed and

untreated depression since my birth) She than went on to lose words

in her sentences. She has been on abilify to take care of the

psychosis, and now that we are thinking LBD, we are thinking it hass

hastened the parkonisms that she has now. I am going to talk to her

neurologist on monday. He changed her to seroquel, but I am

wondering if we should not scale it back or try to stop it for

awhile. She has been at the same job for 38 years. They had to

reduce her job to bagging groceries from stocking shelves. We found

out yesterday she is not doing that well now. This has all been over

a year and a half that the psychosis started(crisis) and about 3

years since she started making small comments about the house being

bugged and paranoia. I am almost done my degree in mental health and

human services, and a minor in geriatric human services. Just in

time I guess, ugg!

> She was still driving as of yesterday, but I am worried about it

now. I am worried she will not beable to make a judgement call. We

had an EEG with major slowing in the brain areas, we are having an

MRI next week (we had on last march showing no changes), we are also

going to see a neuropsych and having a PET??? We are in Maine, and I

am looking for a geriatric specialist. I am not sure that is even

the way to go.

> Thank you all for being here, and also thank you for listening to

this.

>

> Laurie French

>

> " There is much more to rescue than handling the dog. There are

calls to be made, miles to drive, paperwork to fill out, records to

keep. It all costs money. " ~Laurie French

> For animals needing homes: www.petfinder.com

>

> www.neorescue.net

>

> http://www.mastiffrescue.org/

>

> _________________________________________________________________

> See how Windows connects the people, information, and fun that are

part of your life.

> http://clk.atdmt.com/MRT/go/msnnkwxp1020093175mrt/direct/01/

>

>

[Guest guest]

My mom, soon after her Alzheimer's (mis?)diagnosis, had to stop driving.

But she was always a night owl and one night while her partner was

sleeping she got up and got the keys and went for a drive " just to get out

of the house " . (This was while her symptoms were still fairly mild.) She

had a hallucination on the road, swerved, and ended up rolling her minivan

several times, ending up with the wheels in the air, hanging from her

seatbelt and unable to free herself, for over 3 hours as near as the police

could tell, before someone saw the van back in the woods in the early dawn.

The van was totalled.

His,

Sherry

www.owly.net

daughter of , (mis?)diagnosed with AD in 2005, descent slowed by

Aricept; diagnosed with LBD March 2008, in a wonderful NH 1/2 mile from my

house. We're learning to live with Lewy...

----- Original Message -----

> Several of our members have had car incidents and they may share those

> with you.

[Guest guest]

Laurie...............if you have access to a good neurologist specializing in

dementia, I'd suggest that would be the way to go.

new member

Greetings,

I am writing here because my mother was given a preliminary diagnosis of LBD.

She is just 58 as of a few weeks ago. She lives with my father, I am 20 min away

and my brother is 3 hours away. She started with hearing voices in the house,

and thinking the house was tapped. (backing up I honestly believe she has

undiagnosed and untreated depression since my birth) She than went on to lose

words in her sentences. She has been on abilify to take care of the psychosis,

and now that we are thinking LBD, we are thinking it hass hastened the

parkonisms that she has now. I am going to talk to her neurologist on monday. He

changed her to seroquel, but I am wondering if we should not scale it back or

try to stop it for awhile. She has been at the same job for 38 years. They had

to reduce her job to bagging groceries from stocking shelves. We found out

yesterday she is not doing that well now. This has all been over a year and a

half that the psychosis started(crisis) and about 3 years since she started

making small comments about the house being bugged and paranoia. I am almost

done my degree in mental health and human services, and a minor in geriatric

human services. Just in time I guess, ugg!

She was still driving as of yesterday, but I am worried about it now. I am

worried she will not beable to make a judgement call. We had an EEG with major

slowing in the brain areas, we are having an MRI next week (we had on last march

showing no changes), we are also going to see a neuropsych and having a PET???

We are in Maine, and I am looking for a geriatric specialist. I am not sure that

is even the way to go.

Thank you all for being here, and also thank you for listening to this.

Laurie French

" There is much more to rescue than handling the dog. There are calls to be

made, miles to drive, paperwork to fill out, records to keep. It all costs

money. " ~Laurie French

For animals needing homes: www.petfinder.com

www.neorescue.net

http://www.mastiffrescue.org/

__________________________________________________________

See how Windows connects the people, information, and fun that are part of

your life.

http://clk.atdmt.com/MRT/go/msnnkwxp1020093175mrt/direct/01/

[Guest guest]

thank you for the welcome,I try my best even though I don't know anything

about this disease,I had no idea that it could show as early as the mid to

late 50's thats kind of scarey to me,mostly I guess because I feel I can

relate somehow,I have always had different reactions to many medications and

now wonder if thats a sign of something other than I'm just wierd LOL,

Heidi

Re: new member

>

>

>> Welcome Heidi, I'm glad you're here .

>>

>> Heidi is indeed a close friend of mine - so close in fact that I file her

>> emails in my " Family " folder - lol. She gets to listen to me talk about

>> my

>> mom both on the phone and in emails, lucky girl .

>>

>> His,

>> Sherry

>> www.owly.net

>> daughter of , (mis?)diagnosed with AD in 2005, descent slowed by

>> Aricept; diagnosed with LBD March 2008, in a wonderful NH 1/2 mile from

>> my

>> house. We're learning to live with Lewy...

>>

>> ----- Original Message -----

>>

>>> I am a close friend of Sherry's and she has been letting me know how

>>> things are going with her mom so I asked if she thought I could join

>>> the group as well.I am an LPN currently working in pediatric home

>>> care , have had years working in nursing homes both as a certified

>>> aide and as a liscenced nurse.There is a possibility that I my go

>>> back to geriatric nursing in the future and thought it would be a

>>> good thing to be up to date as it were on diseases, etc of the

>>> elderly.For the most part I'll probably be a lurker at least for a

>>> bit,working nights and dealing with fibromyalgia sometimes all I do

>>> is get my emails and skim them til I have time to read,lately I have

>>> had alot of stress in my life so if I focus on others problems maybe

>>> I can calm down a bit too.

>>> So thanks for letting me be apart of this group and please don't let

>>> me being in the medical profession worry you ,I'm not here to

>>> judge,tell on you or anything like that ,I'm here to learn and offer

>>> what support I can

>>

>>

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

>>

>> Welcome to LBDcaregivers.

>>

>>

[Guest guest]

not sure if is the new member or .... but Welcome to the group ..

I can well understand your feeling you don’t need another on top of what you’ve already been through and have already!! However, a CT is usually a good indicator. As it is a new dx it may not be affecting you too much, and also it’s probably localised ie most of your lung areas are ok. BUT is does increase if infx are left untreated.

I was dx as having Pseudomonas 7-8 yrs ago, told “don’t worry, it’s only commensal”.... Many many infx later... I have a few forms now, including mucoid. (forms mucous itself plus what your lungs produce in reaction to infx). I recently read that initial non-mucoidal phase is treatable (with specific abx) but once mucoid, it’s there to stay. Some articles say it is one of the worst infx to have, out of the typical ones that bronch and CF sufferers usually end up acquiring (may take many yrs – I was dx ~ 40 yrs ago!).

I recommend doing as much research as poss & talking further w/ your pulmonologist. I don’t want to worry you unduly – just that most of us have learnt drs aren’t familiar w/ this condition or its variations, so it’s good to be well-informed.

I’m happy to send you a pdf of an excellent article on bronch to your personal e-address, with your permission.

Happy breathing J

Joy

-- --

" Wealth is nothing, position is nothing, fame is nothing.

Who you become inside is everything.

What happens to you is not as important as how you react to what happens. "