Re: New Member

[Guest guest]

Hi,

CMV stands for Cytomegalovirus. It's a virus that you can get through

corporal fluids e.g. saliva. Once you get it, you become a carrier for life.

It is not a problem at all to get it (many people carry it without knowing)

unless you are pregnant, since it can seriously affect the baby (brain,

eyes, etc).

When you have it current symptoms are fever, big ganglions, feeling very

tired, and sometimes hepatyte, but they disappear after some weeks/months

since there is no treatment. Sometimes there are no symptoms at all. The

only thing you can do to check if it's there is blood tests.

This is what I know, hope it helps,

Angeles (Ines' mom)

Re: Re: New Member

Hi,

Could someone tell me what CMV infection is? It is the first I heard about

this and I have been to many doctors, genetic testing etc. I have an appt

at

Mt. Siani with Dr Sybyell Wallas on the 16th of this month. They say they

can answer all my questions ?! We'll see.

Thanks,

('s Mom)

[Guest guest]

In a message dated 2002-05-28 6:20:54 PM Eastern Daylight Time,

PhoenixTubs@... writes:

> , he began to develop a shuffling gait, and a

> certain stiffness about him.

>

Dear Ed,

You will receive a warm welcome from our little group..but we are sorry to

get so many new members. Methinks the medical field is finally learning.

Re the above snipped from your note, has any doctor mentioned LBD with

Parkinsonism?

Be aware that there are almost as many different reaction to drugs as there

are LBDers, and that what one day brings is usually completely changed the

following day. But most of all your loved one is still your Father/ Mother/

wife/husband/ and it is the disease causing the changes.

There are others who will be far more able than I to explain the road ahead.

Best of luck.

Ev

[Guest guest]

Ed

Welcome to a group with a wealth of knowledge and hearts full of caring.

My dad, who will be 65 in July was diagnosed about 5 yrs ago with

Diffuse Lewy Body....another name for Lewy Body Dementia. Sounds like

the same happened to us that happened to you. Almost over night we (my

brother and I) started noticing changes in our dad. I was around him

much more than my brother so the changes were more noticable to me.

After my dads mild heart attack, he really changed and since hasn't been

the same dad I knew growing up. He has been in a nursing home for 3 or

so yrs with 2 of those years at this current nh. I wish I could give

you a mapped out journey you will be taking, however, this disease takes

such sudden and unexpected turns that we all have been taken by surprise

at some point or another. If you have time, I would suggest to read

through some of the archives and also search out Lewy Body Dementia on

the internet. You will find many useful websites concerning this

horrible disease and helpful information about medication that

should/should not be given to a LBD patient. Of course, I have noticed

even though there are similarities, there are also often many

differences. What happens to or works for one LBD person, may be the

total opposite for another. I am so glad you found this group as you

will find it helpful for searching out information and also a place to

ask questions and vent. I will add you to my ever so growing list for

prayer for you and your dad. I have found in the midst of all storms I

truly am not alone as I turn to prayer for all good and all not so good

in my life.

Keep us posted!

Sandie

Des Moines, IA

[Guest guest]

Welcome Ed,

The Doctor gave my dad 6 months to a year, a year ago in February. He has

lost all skills except for swallowing. He still knows us and tries to

communicate but is very hard to understand.

This group has been a life saver for me, to know that there are others out

there who can relate to this illness, and to know you are not alone.

Debbie Curtis,

IA.

[Guest guest]

Ed,

Welcome, and not to discourage you, but to give you some idea, you can

expect a roller coaster ride. Expect the unexpected. My Mom is now 88.

She refused to come live with me until there was a crisis. And it seems

like it has been one crisis after the next for the last 4 years. She is

now in a nh, which I never expected to happen. But that is another long

story.

Good luck.

Donna

A balanced diet is a cookie in each hand. Courtsey of The-Mouth.com

[Guest guest]

PS Ed,

Your name sounds so familiar. Know anyone in Wisconsin?

Donna

A balanced diet is a cookie in each hand. Courtsey of The-Mouth.com

[Guest guest]

Like everyone else, I say welcome. And I hope I'm not repeating what others

have said but here goes:

Check out the Links section of the www.lewybodydisease.org site. There you

will find standard definitions of LBD and other research about the disease

and meds. I haven't updated the links and you can find more recent sites

thru out email group.

As was said, meds work so differently for LBD people. But generally, most

of them are on SOME sort of medication that is usually prescribed for

Alzheimers: Aricept, Excelon or others. They help a lot and your father may

get back some of his abilities.

You need to find someone well versed in LBD because the mixture of meds is

very important. For instance, meds for the Parkinsonism symptoms will

adversely effect the mental condition. So a fine balance has to be found of

what can be tolerated and treated.

Also, LBD people are very susceptible to a disease called Neuroleptic

Malignant Syndrome. They should avoid standard neuroleptics which may be

given if delusions or hallucinations appear.

Depression can also be part of the disease and may manifest itself through

the angry behavior so anti-depressants, again appropriate for someone with

LBD, may be given.

Any doctor your father sees must be aware of the disease. Drugs you might

not think of, such as some drugs for urinary incontinence to name just one,

may have affect on the brain. All his med will need to be reviewed.

And finally, personally, my husband's neurologist, suggested he take daily:

800 IU of vitamin e and all the co-enzyne Q-10 that we could afford. Maybe

some docs wouldn't agree with this so check it out first.

Imelda

To learn more about Lewy Body Disase, please visit the Lewy Body Disease

Association site at: http://www.lewybodydisease.org

[Guest guest]

Ed, a warm welcome, although I am sorry for your need to be here. How very

frustrating to spend so much time getting an accurate diagnosis. It is

interesting to me that your dad's onset was so sudden. It was very gradual

here, with simultaneous physical and cognitive symptoms. I am catching up on

the mail, so will wait to see what you are told about what is coming before I

add my own two cents. The only things that is certain about this disease is

its uncertainties.

Cheryl

[Guest guest]

In a message dated 6/15/02 6:28:13 PM Central Daylight Time, ajb@...

writes:

> When we switched neurologists in January this year, the new dr. wanted to do

> an MRI, something her former dr. deemed unnecessary.

>

>

Hi Lana,

We are also from TN.. (East TN.) I'd like to have the contact info of

the Walsh Lab & Dr. Barkovich if you don't mind. You can contact me off list

if you''d like. We're also hunting for another Neuro in TN. If you come

across a good one, PLEASE let us know.

Thanks,

K.

Father to:

Cody Colton

Age 6

75 lbs. 4 " 1inches tall 2 WW shoe

Perventricular Bilaterial Nodular Heterophia & Polymicrogyria

Medication Dialantin 200 mg's per day

Seizures that shut down his resperatory system when his trough level gets to

16 or below. Running a temperature effects his trough level lowering it by

two points.

Favorite things: Spending the night with the grandparents, watching videos &

being outside & giving all of daddy's kisses to his momma.

[Guest guest]

Dear Lana,

Please tell me more about the lab you sent your MRI to. I got copies of mine

and I was gonig to send them to Dr. Dobsyn. What do you know about each of

them?

Thanks,

Bivens

abj@...

Re: File - Request.txt

Hi,

We are the Beard family in Tennessee: , Lana, (10), Joy (6),

& (twins--4) and Emma (2). One of the twins, , has just

recently been diagnosed with Congenital Bilateral Perisylvian Polymicrogyria.

She had originally been diagnosed with neuromotor disorder (under the cerebral

palsy umbrella) at 18 months of age. When we switched neurologists in January

this year, the new dr. wanted to do an MRI, something her former dr. deemed

unnecessary.

In Feb. we had the MRI done. The original diagnosis was pachygyria. We

joined the pachygyria group and found out about Walsh Lab in Boston. We

contacted them and had 's MRI films sent for them to look at. After Dr.

Walsh reviewed them, he sent them to Dr. Barkovich. This week we got the

report from Walsh Lab that Dr. Walsh and Dr. Barkovich both agree that

actually has CBPS.

Now we are trying to find out as much as we can about this disorder. Thank

you for having this group for support and exchange of information. If you need

to know anything else, please let me know.

Sincerely,

Lana Beard

[Guest guest]

Dear Antonella Bozza,

Hello, I read your introduction. I am from Canada and also Italian. Only write

me in Italian if you need to and my parents will translate for me. My daughter

was diagnosed with Polymicrogyria. Not specifically on the right but all over.

She also had an atrial septal defect and ventricular septal defect. Until now ,

they don't know what syndrome she had. It is very difficult because the

chromosomes were normal too. Please contact me and we can compare our stories

and maybe try to investigate further.

I hope to talk to you soon,

Carolyn mom to angel and sister Ciara 4

File - Request.txt

>

> Hello

>

> We are the moderators of the Polymicrogyria email group at .

Thank you for your interest in joining our community. Do you have a child

or relative with the diagnosis of Polymicrogyria? This is a private group

so please let us know a little bit more about yourself with regard to PMG

and how you were referred to us. We will get right back to you.

>

> Thanks,

> , Kim, & Kate

> PMG Group Administrators

>

>

>

[Guest guest]

Dear Antonella Bozza,

Hello, I read your introduction. I am from Canada and also Italian. Only write

me in Italian if you need to and my parents will translate for me. My daughter

was diagnosed with Polymicrogyria. Not specifically on the right but all over.

She also had an atrial septal defect and ventricular septal defect. Until now ,

they don't know what syndrome she had. It is very difficult because the

chromosomes were normal too. Please contact me and we can compare our stories

and maybe try to investigate further.

I hope to talk to you soon,

Carolyn mom to angel and sister Ciara 4

File - Request.txt

>

> Hello

>

> We are the moderators of the Polymicrogyria email group at .

Thank you for your interest in joining our community. Do you have a child

or relative with the diagnosis of Polymicrogyria? This is a private group

so please let us know a little bit more about yourself with regard to PMG

and how you were referred to us. We will get right back to you.

>

> Thanks,

> , Kim, & Kate

> PMG Group Administrators

>

>

>

[Guest guest]

Mom saw a new psychiatrist at the NH today. Now he says he's not convinced

Mom has LBD. Thinks it is end stage Alzheimer. I'm not convinced that it

isn't LBD. I hope to tell the group my Mom's long and sad saga in the near

future. Right now I've been busy just dealing with helping Mom adjust to the

NH. I understand where you are coming from with your Mom. Your in my

prayers.

Mariea

[Guest guest]

Welcome to you, new members! Though I am very sad for the reason you are here,

I think

you will find much information, as well as a few ways of managing this illness.

You might

want to go to the archives and read those topics which concern you the

most....that will

give you a lot of information quickly. , how painful for you to have to

be far away

when it is your desire to be with your mother!

Mai-Liis, caring for 63 yr. old husband with LBD

[Guest guest]

Welcome to a group full of knowledge, compassion and caring. I am

saddened daily to see so many newcomers, yet find peace in the fact that

we all have people we can turn to. Please post as often as you need and

ask as many questions as you need answers for. As far as LBD goes for

my dad, I am thankful daily that he is still living and that I am still

able to look into his eyes even though he doesn't seem to be the same

dad I grew up with. He is still with me on earth and still recognizes

me. I will add you to my ever so growing list of prayers and hope you

find peace in just realizing you love your mom so

unconditionally......:-)

She is lucky to have you and your family on her team during this battle

of LBD.

Sandie

Des Moines, IA

[Guest guest]

Mariea

Dealing with a LO in a nursing home opens up a whole new case of LBD.

My heart goes out to you at this time, and during the struggles you are

faced with. I have found that prayer has given me much needed strength

and courage to face situations I would have never dreamed I could have

handled. I will say a prayer for you tonight. Hang in there!!

Sandie

Des Moines, IA

[Guest guest]

Sharon

Welcome to the group. Unfortunately there is no straight path that LBD

takes....fluctuates, turns and twists often. Our neurologist gave us a

general time line of 5-7 yrs at diagnosis, where the LBD person is

immobile, wheel chair bound, head hung forward, drooling, just existing.

My dad was diagnosed almost 5 yrs ago and still walks, feeds himself,

and uses bathroom skills most of the time. Everyone is unique in their

own progression and it truly is difficult to say what is going to happen

and when. Please read through some of the archives, and post as often

as you want. Best of luck, and like the other new people, I will be

adding you to my growing list of prayers.

Sandie

Des Moines, IA

[Guest guest]

Dear ,

I feel so badly for you that your mother has been struck with this dreadful

disease. It is quite understandable that you feel extra sadness becaues of

your distance from home. Your discussion of those who thought this was a form

of depression and then other psychiatric possibilities does not surprise me.

Presumed depression is so common with LBD that it has even been suggested

this condition be on the list for assessment for this disease.

We were fortunate that I was on assignment with USCG and therefor close

enough to Baltimore for my husband to be diagnosed at s Hopkins.

Follow-up care there was superb. I wish for all that all the neurologists

knew as much about this disease, but realize that since it is so recently

known in this country, we've a long way to go in knowing about and

understanding it. As you read both old and new posts you will see how little

is known, how much remains to be learned, and how we as caregivers and family

can contribute to the growing body of knowledge.

Welcome aboard,

Cheryl

[Guest guest]

Hello, Sharon, and welcome. I'm sorry, though, for your MIL's diagnosis.

Your questions are the classics. The classicly unanswerable, that is. You

are so right about this being a devastating illness. One reason is that

there is no given path that the patient follows. We know where things are

going, but not when or by what route.

If you get a chance, try to read from the archives at our site. You will see

how varied the rate of progression and the accompanying behaviors are. And

how frustrating.

On a personal note, it is only about six weeks since my husband's new doctor

had me beginning to prepare for his death probably by the end of this year.

My husband has rallied and the doctor can hardly believe how well he is

doing. This disease keeps us on a rollercoaster, believe me.

I'm glad you have joined you and we will certainly share as best we can as

you have more and more new issues arise.

Cheryl

[Guest guest]

Welcome to all new members: This message is especially to who

identified a feeling many of us have shared:

" What is most awful for me is that I am miles away from my Mom because of

my chosen profession as a officer in the United States Navy. All I want to

do is take care of her 24 hours a day and give my Mom the same

unconditional love and support she has provided me my whole life.... For

now, it is a daily struggle for me to understand " why " and make not walk

around angry at the world or shut everything out and simply be overwhelmed

with sadness for the heartache I feel for my Mom "

, one of the first feelings we have is being overwhelmed with the

sadness of the disease, our loss and what the person with LBD has lost. You

are in a grieving process and grieving takes its own time and its own

course. If it gets to the point that it interferes with caring for yourself

or your mother than its time to get supplimental help, at least for the

short term. Most of us recover, get up and start looking for what we still

can salvage and hold dear. Your perspective changes and suddenly you are

happy for those small moments of clarity.

There is no " WHY " , there never is a why with illness like this, just as

there is no why to sudden deaths from car accidents. I once heard a woman

speaking about her cancer: she said before she got cancer she could walk

down a street and never think about that one in a million chance that a

brick would fall on her. But after her diagnosis she took nothing for

granted...the brick is going to fall, at random, on someone. If you believe

in God, that's something you will have to discuss with Him, or Her.

The things you have to be grateful for: that you got her into an assisted

living facility so quickly, that you found an expert on LBD, something that

can be very hard to do. That you have your sister-in-law and your father. I

hope he is getting all the support he needs. I hope your next assignment is

sympathetic to your situation. It won't hurt to ask. And if those feelings

of not being there overwhelm you...then I wonder if the military has family

leave provisions. Good Luck and draw strengh from us. Imelda

To learn more about Lewy Body Disase, please visit the Lewy Body Disease

Association site at: http://www.lewybodydisease.org

[Guest guest]

In a message dated 7/4/02 7:14:20 AM Central Daylight Time,

imelda4@... writes:

> And if those feelings of not being there overwhelm you...then I wonder if

> the military has family leave provisions

How well said, Imelda. Yes, the military does have such provisions, but it

usually means that the active duty personnel are the only ones who can take

care of the loved one or oversee their care. In the Coast Guard we have

Humanitarian transfers, but due to shortage of personnel they tightened up on

HUMS so much that they were almost impossible to get. HOWEVER, a sensitive

and caring Detailer can make all the difference in the world, assuming

adequate resources are available for him/her to help. A " mutual " is also

something to consider. A good ear for you, , would be one of your

chaplains aboard. He/she can be very helpful to you in the grieving process,

which Imelda has explained so well.

Cheryl

[Guest guest]

Dear ,

I remember well the stage prior to my mum going in to a nursing home. I was

my mum's main carer and was finding it very difficult to cope. My brothers

and sisters couldn't understand what the problems were, only seeing my mum

for short periods they couldn't really see her deterieoration. We all went

through a horrible time. It's now two years on - my sisters now are fully

aware of mum's condition and as well as being a support to one another, we

are all supporting mum, my brothers, however, still have not really got

there!

Making the decision to admit mum to a home was very difficult and still is

tough, but it was a desicion that was really taken out of my hands,a s I

really could not provide the level of care she required.

Best wishes

>

>Reply-To: LBDcaregivers

>To: LBDcaregivers

>Subject: new member

>Date: Thu, 25 Jul 2002 19:34:40 -0000

>

>Hi,

>I'm a new member, my name is . My mom has Lew body

>and is 79. In the past year she has gone from people not

>knowing she has anything wrong to now spending the day

>changing clothes. Today she had three pair of panties on. LOL

>

>My problem is my brother. He doesn't think there is anything

>wrong with mom and when he keeps her for a few days, he tells

>her that I am going to put her in a nursing home so when she

>gets home with me, she refuses to sleep because she is " on

>guard " . Needless to say, I don't have much use for my brother,

>but he just lies and tells me he doesn't say this. He is mentally

>ill himself so I never know when I can believe him.

>

>He also yells at mom for using a cane, so she forgets how to

>use one when she gets back with me and he yells at her for

>forgetting things. I'm to the point of sending elder abuse on

>him,. I am not well myself, and am getting a spinal block this

>afternoon. Since mom is not sleeping, she is forgetting how to

>use the bathroom today. Just what I need.

>

>Thanks for being here and I look forward to hearing how you all

>cope. BTW, I'm sending my mom to my sister to stay for a few

>weeks. She said she could stay with her for a few months, but

>we've got a pool in our family that she will send her back to me

>within three weeks.

>

>I keep telling Mom that it is only fair to me to put her in a home

>when I can no longer keep her. She is scared to death by

>hearing stories on the news and the stories my crazy brother

>tells her. I wish there were a way I could sue my brother. Money

>is the only thing he thinks of. (That's why I think he wants to take

>care of her. He would get money from her home when it is sold

>for income for taking care of her.)

>

>Again,

>

>

_________________________________________________________________

Join the world’s largest e-mail service with MSN Hotmail.

http://www.hotmail.com

[Guest guest]

,

can you have your mom's doctor talk to your brother? Maybe he/she can

explain to him how things are. I wouldn't even mention to your mom about the

nursing home right now. If things get much worse then will be the time and

more than likely she may not realize where she is and in the meantime she

won't worry about it so much. good luck...Shirley

>

>Reply-To: LBDcaregivers

>To: LBDcaregivers

>Subject: new member

>Date: Thu, 25 Jul 2002 19:34:40 -0000

>

>Hi,

>I'm a new member, my name is . My mom has Lew body

>and is 79. In the past year she has gone from people not

>knowing she has anything wrong to now spending the day

>changing clothes. Today she had three pair of panties on. LOL

>

>My problem is my brother. He doesn't think there is anything

>wrong with mom and when he keeps her for a few days, he tells

>her that I am going to put her in a nursing home so when she

>gets home with me, she refuses to sleep because she is " on

>guard " . Needless to say, I don't have much use for my brother,

>but he just lies and tells me he doesn't say this. He is mentally

>ill himself so I never know when I can believe him.

>

>He also yells at mom for using a cane, so she forgets how to

>use one when she gets back with me and he yells at her for

>forgetting things. I'm to the point of sending elder abuse on

>him,. I am not well myself, and am getting a spinal block this

>afternoon. Since mom is not sleeping, she is forgetting how to

>use the bathroom today. Just what I need.

>

>Thanks for being here and I look forward to hearing how you all

>cope. BTW, I'm sending my mom to my sister to stay for a few

>weeks. She said she could stay with her for a few months, but

>we've got a pool in our family that she will send her back to me

>within three weeks.

>

>I keep telling Mom that it is only fair to me to put her in a home

>when I can no longer keep her. She is scared to death by

>hearing stories on the news and the stories my crazy brother

>tells her. I wish there were a way I could sue my brother. Money

>is the only thing he thinks of. (That's why I think he wants to take

>care of her. He would get money from her home when it is sold

>for income for taking care of her.)

>

>Again,

>

>

_________________________________________________________________

MSN Photos is the easiest way to share and print your photos:

http://photos.msn.com/support/worldwide.aspx

[Guest guest]

,

Who has the LEGAL responsibility to take care of your Mom? If no one

has, I would suggest you find a way to get to a lawyer and get the legal

work that is really necessary anyway. Then that person will make the

decisions no matter what anyone else wants. Hopefully the siblings will

work together, but one person need to be legally responsible.

Donna

If you drink a diet soda with a candy bar, the calories in the candy bar

are canceled out by the diet soda.

[Guest guest]

Welcome to the group. As if the disease isn't enough to deal with, and

family issues on top of it. Just keep focused that the care of your mom

is most important. Best of luck!

Sandie

Des Moines, IA