Duration - Your Mom & Answers

[Guest guest]

Hi Sheryl:

My name is Dolly and I am one of the founders of CJD Voice. I

wanted to respond to your email of 11-17-98.

I am so sorry to hear of your mother has been diagnosed with CJD. I lost my

husband, JD, to CJD on March 18, 1997. I stayed with him on a constant basis

from August 1996 until the moment of his death on March 18, 1997 so I have

walked the CJD pathway and have in-depth personal experience with CJD and how

it progresses in the patient.

Concerning the feeding tube, is it the nasal or gastric type? Do you know

when your mother's first symptoms appeared?

From your description of her current symptoms, I would say your mom is in the

latter stages of CJD ... probably the only thing keeping her alive is the

feeding tube. I did have a feeding tube in my husband but had it removed when

a confirmation of CJD was made. We also had living wills and I knew he would

not want to be trapped in his own body with no way out. He could not move or

do anything at all from January 1997 until his death. The feeding tube only

prolongs the inevitable end with CJD ... which is death.

The fever may be coming from an infection inside her body. It could be from

the feeding tube or elsewhere inside her. Has she been given any antibiotics

to combat this? My husband also had a fever for some time which was thought

to be caused by internal infection.

I estimate your mother has perhaps a month to live ... however, if the

feeding tube remains in her, she may survive longer. If her fever is

infection, she will develop congestion from this. The fever, congestion and a

final comatose state would indicate she does not have long to live with this

dreaded disease.

If you send me your telephone number to my personal email address at

dbc006@..., I would be happy to call and discuss these matters with you

further.

Sheryl, may God bless you, your mom and your family during this very

difficult time. The thoughts and prayers of CJD Voice are with you.

Thoughtfully,

Dolly