Re: New member

[Guest guest]

, hello to you too.I have mixed emotions about being on here myself. I

want the List for everyone's loving support, and yet not for the reasons they

give support., Caregivers are the greatest people I know.

When you sign in give it a pause, And get Everything in order and look at

our vending machined.

Welcome again

Caregiver for my True Texas Gentleman husband of 35 years. He has LBD with

Parkinsonism.

Imogene

In a message dated 7/4/2006 8:05:07 PM Central Daylight Time,

lzahavi@... writes:

Hi Everyone,

I am new to the list. My father, an " old " 79, was

recently diagnosed with LBD while spending 3 weeks on

a geri-psych ward. This was after he thought he had

been starving for 3 days and attempted to strangle his

caregiver. Unfortunately, he was forced to leave his

assisted living place, two other places rejected him,

and he is now in an " okay " place specifically for

people with dementia.

My husband, brother and I rescued him in Sept. '04

from a hurricane shelter after his home was severely

damaged (Florida). We had only a few days to gather

up his papers (no joke as he had saved everything

since 1947 and in an effort to remember, had written

his account numbers, ss number, etc. on little scraps

of paper all over the house). We shipped his papers

to Oregon and took him home with us.

Since being here, he has almost died from anorexia,

lived in foster care (where he was depressed and

neglected socially), lived at an amazing

state-of-the-art place (where his hygiene was badly

neglected) and now in what is probably a typical place

where they do their best, but miss imnportant details.

I'm very involved, no other family here to help. The

LBD diagnosis explains so many things but was missed

initially by supposed experts, possibly due to the

fact he does not have the hallucinations.

I'm curious who is " out there " also dealing with this.

I've learned a lot and still have many questions.

Thanks,

__________________________________________________

Do You Yahoo!?

Tired of spam? Yahoo! Mail has the best spam protection around

http://mail.yahoo.com

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

[Guest guest]

Dianne, a big warm welcome!

Imogene

In a message dated 8/20/2006 1:46:25 AM Central Daylight Time,

cadysgran@... writes:

My name is Dianne and I live in north Florida--about 60 miles east of

Tallahassee. My dad (83) who lives in Orlando with my mom (87) was diagnosed

with

Diffuse Lewy Body Disease about 3 years ago, but I believe that he has had it

for at least 5 or 6 years. My mom is his sole caregiver and my husband and I

get down to Orlando (about a 3 hour drive) at least once a month--many times

for doctor's appts but often just to visit. In addition to LBD he also has

macular degeneration which makes it difficult for him to see to do anything.

Once he was diagnosed I tried to find out as much as I could about this

disease online, but didn't get to this list until just a couple of months ago.

I am

an only child, so my mom depends on me to help her make all of the decisions

concerning him. I have read enough about LBD to know that this is not going

to have a happy ending--and she keeps thinking he's going to get better. I'm

not exactly sure where he is on the time line of the

disease. He has been having hallucinations for at least 6 years, but the

Parkinson's symptoms are probably 3 or 4 years old. He has had a heart attack a

few years ago and is on medications for that, the macular degeneration, LBD,

and the usual vitamins/supplementdisease. He has been having hallucinations

for at least 6 years, but the Parkinson's symptoms are probably 3 or 4 years

old. He has h

[Guest guest]

Hi Carmen,

Sounds to me like you need some T3. My sister has similar issues to you, but she

refuses to find another doctor. So she just keeps forming more diseases. I

learned the hard way that -You can lead a thirsty horse to water but you can't

make him drink it. Everyone has to make their own choice.

If you get lingering symptoms after the blood work is supposedly fine you may

want to look into a T3/T4 combo treatment. The mainstream medical belief is that

patients' inactive T4 hormones convert readily to the active T3 hormones needed

for the body to function properly.

But, reality is that some -many- patients do NOT convert adequate amounts of

inactive T4 into the active thyroid hormone T3, both T3 and T4 are needed in

appropriate amounts for the body to function properly. The amounts each body

needs are individualized.

This leaves patients on T4-only meds with lingering symptoms like achy joints,

memory problems and/or brain fog, can't lose weight, cholesterol issues, low

temps, thinning hair and/or outer eye brows, low energy, and low level

depression etc.

Some patients, taking T4 only meds have ended up with additional diseases in

cluding Dx with Chronic Fatigue Syndrome or Fibromyalgia plus others, ~myself

included.

Another thing to do is STOP eating GLUTEN! We have to stop eating gluten -note

gluten is found in ALL grains- if we have blood tests showing autoimmune thyroid

disease. We know that gluten is associated with some many diseases from

depression to migraines, from fatigue to infertility, from IBS to obesity, from

diabetes to thyroid disease etc. Antibodies can appear in the blood years before

presentation of symptoms in various disorders.

Also, stop eating SOY and all refined foods!

Hashis is an autoimmune disease so killing the thyroid or removing it does NOT

STOP the autoimmune attack. A friend that had a total thyroidectomy back in 2003

still has antiTPO antibodies. They have lessened but are still there 9 years

later.

Thyoid disease is the most unDX'd - underDx'd and mistreated disease in the

world. I am like Betty another poster, disgusted with the medical community and

doctors lack of knowledge. I would be dead had I not did my own research and

kept seeking-out competent help.

Hang in there and I HTH,

~Bj

>

> Hi, I'm new to the board so I want to introduce myself.

>

> I have Hashimoto for 17 years, and have been diagnozed with Fibromyalgia and

CFS.

>

> My current doctor says that all the damage is caused by the thyroid antibodies

and the only solution is to have a total thyroidectomy to get rid of the

antibodies. I can't decide if this surgery is a cure for real, or if this would

be let me more weak. So I'm looking for more answers.

>

> Thank you,

> Carmen

>