CJD

[Guest guest]

:

Welcome to the group. I know that losing someone to any disease is

painful, especially on where you can't do much. We are here for you.

Compassionately

a G.

----------

>

> To: cjdvoice (AT) onelist (DOT) com

> Subject: CJD

> Date: Tuesday, November 17, 1998 12:03 PM

>

> From: spaciey@... (sissy)

>

> Hi! my name is and I am from Indiana. I am new to the list. I am

> here for your support as best as I can be!?? I lost my Mother in 1995 on

> Good Friday=Easter weekend to CJD. This is a very awful disease and very

> painful to watch a loved one die from it!! Sometimes I feel we could

> have done more: But we did everything we could possiably think of!! when

> i say (we) I have 4 sisters that are like me and you? we want to know

> more and we need more support too!! Thank you!! Liz!!

>

>

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

>

[Guest guest]

Dear Sheryl, I feel terrible for what you and your sister are going through

with your mom. My Dad died of CJD in 1968,and even 30 years later the

memories are still strong. But you've come to the right place, we all

understand what emotions you are going through,so don't ever hesitate to

write any or all of us for help,support,or you just want to yell out in

frustration. [i have many times,and it's amazing how many soothing messages

you will get.] I have a question to ask you about Huntingtons disease. Has

it ever been detected genetically identified,or just diagnosed by symptoms.

The reason I'm asking is that I have read some papers that suggest that

not only is Cjd misdiagonosed as Altsheimers[sorry my spelling is bad] But

that it has also been mistaken for both ALS and Huntingtons disease.

Depending how the symptoms present themselves and the length of the disease

it can be very hard to tell. My dad suffered from CJD for over12 yrs. and

his sister about 15. So since CJD is so rare it would be easy to mistake it

for something more common.. My heart goes out to you having to deal with

this one disease, I'm just hopeing that maybe it's only one not 2. Don't

forget we're all here for you Nancie

[Guest guest]

Dear Sheryl, I feel terrible for what you and your sister are going through

with your mom. My Dad died of CJD in 1968,and even 30 years later the

memories are still strong. But you've come to the right place, we all

understand what emotions you are going through,so don't ever hesitate to

write any or all of us for help,support,or you just want to yell out in

frustration. [i have many times,and it's amazing how many soothing messages

you will get.] I have a question to ask you about Huntingtons disease. Has

it ever been detected genetically identified,or just diagnosed by symptoms.

The reason I'm asking is that I have read some papers that suggest that

not only is Cjd misdiagonosed as Altsheimers[sorry my spelling is bad] But

that it has also been mistaken for both ALS and Huntingtons disease.

Depending how the symptoms present themselves and the length of the disease

it can be very hard to tell. My dad suffered from CJD for over12 yrs. and

his sister about 15. So since CJD is so rare it would be easy to mistake it

for something more common.. My heart goes out to you having to deal with

this one disease, I'm just hopeing that maybe it's only one not 2. Don't

forget we're all here for you Nancie

[Guest guest]

Nancie,

Thanks for your kind words. I can easily understand that the memories of what

your Dad went through are still strong after 30 years, because I can't imagine

ever totally getting over what is happening to my mothr right now.

The Huntington's Disease is a genetic disease, and the presence of the gene

can be detected by a blood test that costs around $1,000 from what my father

tells me. My mother's father had it, her sister has it, and one of my cousins

has tested positive which gives her an 85% chance of developing symptoms at

some point in her life. She is currently in her mid-20's. My father asked

that a test be run on my mother with the condition that none of us be given

the test results without asking for them so that we could get counseling

beforehand. My mother never wanted to be tested when she still had her

faculties, and for her right now it is a moot point whether she would ever

develop Huntington's. She tested positive for CJD, so we are sure that is

what is killing her. I think Huntington's would have been a kinder death.

They have developed some treatments, one of which my aunt is taking which is

slowing down the progression of her disease. By the way, I don't believe that

CJD is so rare, just that they want us to think that it is. I'm sure that as

time goes on, we will find that many things that are CJD have been

misdiagnosed as something else. Take care. Maybe I'll see you at the

conference in June.

Sheryl

[Guest guest]

I just checked our local listings the the show, " Mad Cow " is coming on at

10:00 pm tonight (central standard time). I am going to record it.

Beverly G.

[Guest guest]

Hi Beverly

Just saw that you were going to record this. I was wondering if I could get a

copy.

Thanks,

hugs,

Beverly B

[Guest guest]

Beverly B:

I would be happy to make a copy of the tape for you. I want to check with the

post office in the morning to see if I can find a cheaper way to mail the

tapes (it was $3.00 last time).

Email your address to me privately and I will get a copy to you.

Take care!

Beverly G.

[Guest guest]

atrophy of the brain is present in most patients---they can see this on a

biopsy also---

[Guest guest]

atrophy of the brain is present in most patients---they can see this on a

biopsy also---

[Guest guest]

atrophy of the brain is present in most patients---they can see this on a

biopsy also---

[Guest guest]

Betty:

My dad had the following symptoms you mention:

Jerking

Memory Loss

Loss of Speech

Depression

Earache

Pneumonia (in the last week of his life - while he was comatose)

Failed eyesight (incorrectible vision that led to complete blindess;

unfortunately, he was also losing his mind and didn't even know he was

blind!!)

Mobility Loss

Hallucinations

Personality Change (BIG TIME!! -- he went from sweet and gentle to loud and

aggressive!!)

Insomnia

Constipation (last two weeks of his life)

Coma

In addition to the ones you mentioned, Dad had:

Balance Problems

Right hand turned inward and became stiff and clawlike

His eyes would dart back and forth the last two weeks of his life (it was like

watching someone who was watching a tennis match)

Extreme fear (the " deer in the headlights " look in his eyes)

Hope this helps.

Beverly G.

[Guest guest]

Betty:

My dad had the following symptoms you mention:

Jerking

Memory Loss

Loss of Speech

Depression

Earache

Pneumonia (in the last week of his life - while he was comatose)

Failed eyesight (incorrectible vision that led to complete blindess;

unfortunately, he was also losing his mind and didn't even know he was

blind!!)

Mobility Loss

Hallucinations

Personality Change (BIG TIME!! -- he went from sweet and gentle to loud and

aggressive!!)

Insomnia

Constipation (last two weeks of his life)

Coma

In addition to the ones you mentioned, Dad had:

Balance Problems

Right hand turned inward and became stiff and clawlike

His eyes would dart back and forth the last two weeks of his life (it was like

watching someone who was watching a tennis match)

Extreme fear (the " deer in the headlights " look in his eyes)

Hope this helps.

Beverly G.

[Guest guest]

In a message dated 2/21/99 2:29:43 PM Mountain Standard Time,

BBWELLS@... writes:

<< Jerking Failed eyesight

Memory Loss Mobility Loss

Loss of speech Hallucinations

Depression Personality Change

Earache Mouth sores

Frequent Pneumonia Insomnia

Constipation Coma >>

My best friend Bissell had the following:

Bleeding from her ear

Considered legally blind 1 month before death

jerking

mobility loss

speech was slurred almost stroke-like symptoms

loss of speech

hallucinations

personality change

She had brain surgery about 7 or 8 years ago; the dura matar was contaminated.

She passed away on 9/21/98 at the age of 39 in Denver, CO. But we talked up

until she went into the hospital before she was admitted to hospice. When I

visited her she was not aware of anything; or so we think, but I know that

when I was in her room, and I talked to her, she turned her head and tears

came from her eyes. I don't know how much these victims know or understand,

but I do know that they can be aware, as some are in comas, and we just don't

know it. I have to believe that she knew I was there, because she was best

friend. She was like family to me and I miss her so much, I can't stand it.

Symptoms seem to be the same.

ALANA

[Guest guest]

Betty,

My mother in law's MRI showed brain shrinkage also. The pattern on her EEG

was a more important key to the neurologist.

Vicki

[Guest guest]

Dear Betty-

Yes, my brother had alot of brain shrinkage. They called it atrophy of

the brain. Their reasoning.........................Alzheimers, possible

stroke, primary progressive aphasia, dementia, etc. Take care Betty.

It sounds like you are a very strong woman, with your priorities set on

getting some answers, just like the rest of us. God Bless.

a

[Guest guest]

Yuck. Everybody seems to mention that look in their eyes of FEAR. My

brother as well. He was only 35 yrs old. A very healthy man who loved

the outdoors, and loved to hunt. Unfortuneately, his love for deer

probably killed him. That look in his eyes bothered me more than

anything, because by the time that arose, he couldn't talk to say what

was on his mind. I hope it wasn't a fear of dying, or wondering WHAT

THE HELL IS GOING ON. He died not knowing anything about CJD.

a

[Guest guest]

They weren't able to deduce any info. from my brothers EEG'S. It wasn't

until his last months that he was taken to St. Louis for a spinal tap to

check for the prion protein. This was only because there happened to be

a specialist there that was familiar with CJD. If he hadn't been

brought there, he would have been diagnosed with Primary Progressive

Aphasia............................

[Guest guest]

I also remember my dear mother having that look of fear in her eyes. If I

came up to her to say " hi " , she'd jump. I had no idea what was going on at

the time....since I had just hear of CJD and knew little to nothing about

the disease.

I can still see her eyes.............

Suzanne

Re: CJD

>

>

>Yuck. Everybody seems to mention that look in their eyes of FEAR. My

>brother as well. He was only 35 yrs old. A very healthy man who loved

>the outdoors, and loved to hunt. Unfortuneately, his love for deer

>probably killed him. That look in his eyes bothered me more than

>anything, because by the time that arose, he couldn't talk to say what

>was on his mind. I hope it wasn't a fear of dying, or wondering WHAT

>THE HELL IS GOING ON. He died not knowing anything about CJD.

> a

>

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

>Come see our new web site! http://www.onelist.com

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

>If you have any questions, problems, concerns, etc... please contact Liz at

LArmstr853@..., Pat at Ape826@..., Dolly at DBC006@... or

Beverly G at Bevalso@....

>

[Guest guest]

Betty

My husband also had the symptoms you mentioned.

Jerking Memory Loss

loss of speech depression

Ear infections (puss in both ears)

pneumonia in the last week of life - he was also comatose

failed eyesight - he also did not realize he was losing his eyesite

mobility loss

hallucinations

personality change - BIG TIME TOO

Insommnia

Constipation then incontinence

coma

the right hand was also held stiff and clawlike

and the last two weeks, his arms were drawn up to his body and we couldn't get

him to straighten them out

Balance problems

FEAR

seizures

also, I don't know if this has anything to do with it, but Steve seemed to be

" addicted " (I don't know if that is the right word) to anything he was doing.

If he was reading a book, he couldn't stop until someone stopped him or if he

was watching tv, he couldn't stop or even eating, it seemed once he started,

he couldn't get enough....and so on. I don't know if this has anything to do

with it, but it just seemed so odd.

anyway, hope this helps too

hugs, Beverly B

[Guest guest]

I just found out today that my mother's MRI showed brain shrinkage. About her

EEG, they wrote, " Her EEG was grossly abnormal at that time with general

slowing and triphasic waves. " This was on 10/28/98. On 11/2/98, another EEG

" showed again, bilateral slow wave with occasional rhythmic sharp activity,

sharp waves seen were more prominent in the righ temporal area tracing appears

less sharp on the second and amplitude of lower voltage than the prior EEG but

both were abnormal. "

Can anybody tell me what that means?

Sheryl

[Guest guest]

Margo,

My mother in law would have impacted bowels--it was one of the first signs.

Her chronic bowel problems got worse. At the nursing home they would

" unimpact " her " manually " every 4 or 5 days or so. The gastroenterologist

that she saw before we knew about the CJD said that she had a neurological

problem that was preventing the message to " go " from moving from the brain to

the bowel. She also had stomache pains from the constipation and after she

couldn't tell us what was wrong, we had to guess from her symptoms.

Yes, I think the bowels are another affected area given the number of bowel

problems we have discussed here. They were all similar tales.

Vicki

[Guest guest]

Dear Betty,

My dad had both a Cat-scan and a MRI, both showed brain shrinkage. The EEG

was normal. The test using his spinal fluid confirmed CJD. My dad, in the

hospital now, has

developed a bowel blockage, I wondered if this was related to his CJD or a

problem we were

unaware he had.

At 04:29 PM 2/21/99 -0500, you wrote:

>From: BBWELLS@... (BETTY WELLS)

>

>Hi Friends:

>

>I have not noticed that no one has mentioned something that I would like

>to know.

>

>My husband was diagnosed with CJD on Tuesday a week prior to his death

>on Saturday.

>A braiin scan had been done, an MRI and then an EEG. The brain scan

>showed nothing. The MRI showed brain shrinkage, such teh Dr. explained

>some Alzheimers patients may show or a much oder patient would have.

>Then the EEG varified her suspicions that he had CJD.

>

>What I would like to know...Has any other patients or victims had any

>such report about brain shrinkage?

>

>My husband did have the right shoulder pain.

>Jerking Failed eyesight

>Memory Loss Mobillity Loss

>Loss of speech Hallucinations

>Depression Personality Change

>Earache Mouth sores

>Frequent Pneumonia Insomnia

>Constipation Coma

>

>Are these symptoms related to CJD? Since he was a Diabetic and a

>Renal/Dialysis patient the symptoms are so close in comparison. He has

>had many surgeries over the past 2 years and many blood transfusions.

>During one of the blood transfusioms there was a blood spill I call it,

>where the tubing came loose and spilled the blood everywhere. But I was

>told that it could cause no harm to him,

>

>WE were married for 18 years of which he was sick most of the time. But

>all of the symptoms I listed were not present until the past 2 years

>that he was on Dialysis. The last month before God merciflly took him

>HOME, was one of those horrible times that I have read of your

>experiences. my heart goes out to you and my prayer is that God will

>give us all the strength that we need to survive. I plan to to try turn

>all my negatives into POSITIVES.

>

>Thanks for what the CJDVoice has meant to me..

>

>Be Blessed....Betty

>

>

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

>Come see our new web site! http://www.onelist.com

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

>If you have any questions, problems, concerns, etc... please contact Liz at

>LArmstr853@..., Pat at Ape826@..., Dolly at DBC006@... or

>Beverly G at Bevalso@....

[Guest guest]

, I don't think very highly of doctors but I must say if it weren't for

one in particular then we wouldn't of had any help. We couldn't get help

cause there was no diagnosis for her & she was too young to get Medicare or

Medicaid (52). My dad had to take care of her along with a 12 yr. old & a 14

yr. old. We all made a trip to the doctor. I was in tears. I begged him to

get help. Finally he said that he'd try Hospice. We got Hospice for 1 hr. a

day & we also had volunteers (for about

6 hrs./week) My sister set up the volunteers (From the " Alzheimers Assoc. " )

Contact those 2 firms & see if they could help. The people from " Alzheimers "

were outstanding!!!!!!! They went above & beyond the call of duty. It's sad

but it's very hard to get help. Of course we needed around the clock care but

we got what was given to us. Hang in there & pray! I prayed EVERY day (And I

still do out of habit & because I want to) God will give you guys the courage

& strength to go on.

Good Luck,

e

[Guest guest]

She can get help!! She has to work fast, before he dies, and get this

info. in to them. My sister in law is getting S.S. for herself, and

their son. My brother didn't have insurance, etc., cuz he had to quit

his job of many years, due to his illness. DON " T GIVE UP!!!! It is

owed to her!!!!!!!!!!!!!!!!!!!!!!!!!!!! She has to pull it together

enough to get this info. from the inlaws, before she deserts them.(???)

Annette

[Guest guest]

I prefer - " Speaking for those we've lost "

(that's my choice)

fyi - e