-----Original Message-----
From: Terry Singeltary <flounder9@verizon.net>
To: cjdvoice <cjdvoice@yahoogroups.com>
Cc: bloodcjd <bloodcjd@yahoogroups.com>
Sent: Mon, Oct 16, 2017 11:25 am
Subject: THE MANY FACES OF CJD AND CJD WATCH and CJD Voice, and CJD Foundation, and BloodCJD

Greetings CJD FAMILIES AND Friends, well, this is where it all began back around 1997. i thought some of you might want to review some old history here, cjd watch, cjd voice, data base, message boards and this will take you back to about 1998 or so. cjd watch and the many faces of cjd are both pretty much dead in the water, and have been for some time, and there was also CJD Voice. anyway, i ran across this on the internet today and did not even know it was still there...


CJD WATCH

http://community.fortunecity.ws/heal...9/part1cjd.htm

CJD WATCH DATA BASE

http://community.fortunecity.ws/heal...9/index-2.html

CJD WATCH MESSAGE BOARD

HIT NEXT AT BOTTOM OF PAGE TO MOVE TO NEXT SET OF MESSAGES IN MESSAGE HISTORY.

http://disc.yourwebapps.com/Indices/236650.html#1395

The Many Faces of Creutzfeldt-Jakob Disease (CJD)

http://community.fortunecity.ws/heal...pr/798/cjd.htm

BARBARA FREDERICK POULTER
DIED 12-14-97

If I had one last thing I could tell you, it would be, I love you. I'm sorry for the stupid argument we had the last few months, BEFORE this hideous disease ROARED through your body. BUT, I PROMISE MOM, YOUR DEATH WILL NOT GO UNANSWERED!

HEIDENHAN VARIANT CREUTZFELDT JAKOB DISEASE

We got a call from my Mother around the end of Oct. saying "the damn'est thing has happened, I can't see, and if I'm talking to you and I don't make sense, bare with me, I'll come back". It was a shock to all of us. It seems that a few days before, she was crossing the ferry and became frightened because she was having problems seeing. She explained it as looking down a tunnel or not being able to see from the sides, and seeing brown spots.

We had NOT been talking, over something, we had NO control of, for a few months. So I did not know she had been having these visual problems, until she was blind. These were her first symptoms. From that point on, I was with her most everyday. I had to cross the Galveston/Bolivar ferry, and its about 30 minutes each way, so as the disease progressed, it gave me a great deal of time to think.

When the visual problems started, it was about 2 weeks later, and she was blind. That led to coordination, and balance problems starting. But as this hideous disease progesses, it just GOES. You don't seem to catch up with it.

It was like a fire in a hurricane. We would go out and get her things she needed one day, and the next day it would be obsolete, because the disease had gone to another stage. So you started over.

Her coordination and balancing led to being in a wheel-chair. She was starting to get these trembles. I also noticed how her hands and feet started to go inward.

Her speech was nothing more than jerble at this time, and this was probably about the 6th week, (at this point we had to tie her to the wheel chair, to keep her from falling out).

The trembles had turned into SEVERE JERKS, that at times would take 3 of us to hold her down.

I will never forget that....

About her 8th week she became comatose....

She died around the 10th week.

I had spent the night, she had problems through the night, so the nurse came. She checked her out and comforted us, (HOSPICE IS A WONDERFUL ORGANIZATION). The nurse said she seemed to be alright and that it would probably be alright to go home for a few hours. I was on the Ferry, going back to Galveston, when I got the call, she was gone. What can you do, Mom was gone, and I was stuck on the Damn Ferry, going the wrong direction.

She knew what she had. I remember, before she had lost her speech completely. After a doctors conference, and CJD had come up. She heard us say CJD, and she screamed, SHE knew! At that point, I didn't know what was, much less, CREUTZFELDT JAKOB DISEASE.....I have learned a lot since. I have learned I truly miss my Mom and I am MAD as hell that she is gone!

Terry/MADSON!!!

SYMPTOMS:

VISION - BLIND IN ABOUT 10 TO 14 DAYS
COORDINATION AND MUSCLE CONTROL
SWALLOWING DIFFICULTY
CONFUSION AND DEMENTIA
SPEECH PROBLEMS
HALLUCINATIONS
TREMBLES TOO SEVERE
JERKING
LOSS OF WEIGHT
HANDS AND FEET GREW INWARD
UPPER TRUNK STIFFNESS, SHOULDER, UPPER
ARM

http://community.fortunecity.ws/heal.../798/terry.htm

NOT TO FORGET CJD VOICE FOUNDERS Liz, Pat, Dolly, and Dorothy...whom got this all started. love them girls...

Liz at LArmstr853@aol.com, Pat at Ape826@aol.com, Dolly at DBC006@aol.com or Dorothy at DEK@provalue.net.

CJD VOICE

http://creativegumbo.net/cjdvoice/

CJD VOICE MESSAGE BOARD

http://disc.yourwebapps.com/Indices/7498.html

also, i thought i might remind everyone of our friend and founder of the 1st original CJD Foundation, a beautiful person... Cele Sardo

Terry S. Singeltary Sr.
CJD FOUNDATION MIAMI FOUNDER CELE SARDO
Mon Jun 15, 2009 13:04
68.238.97.136

Greetings CJD Family,

I want to let the old timers, and everyone know, that Cele Sardo, founder of the original CJD Foundation out of Florida, who pioneered support for CJD victims of all types here in the USA first, before the CJD Foundation INC at CWRU took it over, before CJD voice, or CJD watch. Cele passed away this morning about 4 AM. she was my friend, and as twisted as i may seem sometimes, she has always understood my anger. Joe told me that the family will bury Cele in the Kendall area of Miami later this week where Mr. Sardo, Joe's father is buried.Cele lost her husband Joe (Joseph's Father), to sporadic CJD around 1989. Mr. Sardo was 56 when he died from CJD. Cele and and her friend Mayra Lichter did a great job with the CJD Foundation when they had it, and Cele knew too well that the CJD surveillance was lacking here in the USA. Cele Sardo and Mayra Lichter Founded the CJD Foundation originally back in Miami, Florida around 1993, and what an organization of support is was. The Sardo Family has done a _great_ deal for research for CJD. Our thanks go out to them, along with our prayers for the family at this difficult time...

Two Women Against Mad Cow Disease November 1, 2001 Good Housekeeping by Lisa Belkin

http://www.organicconsumers.org/madcow/women110101.cfm

Proper sterilization may ward off deadly CJD transmission Healthcare Purchasing News , May, 2001

http://findarticles.com

with saddest regards,
i will miss my friend. ...terry

http://disc.yourwebapps.com/Indices/236650.html

Two Women Against Mad Cow Disease

ORGANICCONSUMERS.ORG


THE ORIGINAL CJD FOUNDATION FOUNDER AND FRIEND Cele Sardo

http://disc.yourwebapps.com/discussi...D;pagemark=350

not to forget our friend Debbie Oney bloodcjd

CREUTZFELDT-JAKOB DISEASE EXPLAINED

by Debbie Oney
September 28, 1998


Children can be affected by Creutzfeldt-Jakob Disease ("CJD"). They may have received blood products which were withdrawn from the market due to possible CJD risk and their parents may have received withdrawal notifications. Or they may lose family members to the disease. Student-athletes need to be warned about the dangers of black market cadaver-derived growth hormones which put them at risk for CJD.

CJD is an infectious, rapidly progressive fatal brain-deteriorating disease. One strain, nvCJD, is linked to Mad Cow Disease in England. We have classical CJD in the United States and throughout the world. In one Yale University study of Alzheimer patients, 13% -- when autopsied -- were found to be have CJD. The cause of most cases of CJD is unknown. The incubation period can be decades.

CJD should be considered whenever a person develops a rapid dementia and involuntary, irregular jerking movements. Initial symptoms are often psychological, visual and coordination problems. The person usually dies within a year of showing symptoms.

It is not known if CJD is spread to humans by blood. The infectious agent has been found in blood, but there have been no documented cases of people getting CJD through blood products. Blood products are present in many vaccines such as the measles-mumps-rubella and allergy vaccines, in In Vitro Fertilization cultures, and in medical test fluids. As a precaution, blood relatives of CJD victims and people who are at risk for CJD due to past medical procedures should not donate blood. The Centers for Disease Control is conducting a study to determine if CJD can be transmitted to humans by blood. Until September 1998, blood products were withdrawn from the market if a donar died of CJD or was at risk for the disease.

The CJD Voice website has a great deal of information on the disease. It is located at http://members.aol.com/larmstr853/cjdvoice/cjdvoice.htm. CJD Voice is an e-mail discussion support group.

Blood Recall/Withdrawal - CJD is an e-mail group for people who have received blood recall/withdrawal notifications. The website is at http://members.aol.com/debbieoney/blood.htm. ;

Biographical Sketch: Debbie Oney has a Masters degree in Social Work, University of Illinois, Chicago, Illinois, 1974 MM (Master in Management) with specializations in Hospital and Health Service Management and in Finance, Kellogg Graduate School of Management, Northwestern University, Chicago, Illinois, 1981.

Debbie Oney writes the above article in the following capacity: as Director of Public Awareness, CJD Voice Discussion/Support Group Cofounder, Blood Recall/Withdrawal - CJD Discussion/Support Group.


without all these folks, i don't think we would be where we are today with knowledge and support for cjd tse prion victims and their families...THANK YOU!


warmest regards, terry