Various

[Guest guest]

I get the digest version of CJDVoice, so I'll comment on three issues

that have been brought up in the past couple of days.

Re: private insurance. Private insurance (except for some long term

care policies) and also Medicare will not cover " dementia " because it is

believed to require custodial rather than skilled nursing care.

Fortunately for families, if a person with CJD requires nursing home

care, it is often for a short period--and up to thirty days or so WILL be

covered by Medicare if the person is transferred to the nursing home from

a hospital. Also, people with CJD may have some unusual symptoms that

will allow doctors to justify skilled nursing care for a longer period of

time. Medicaid WILL also cover custodial care, but to be eligible many

families have to " spend down " or make legal provisions that would take

longer than CJD typically lasts. (Families with loved ones who suffer

the most common form of dementia [Alzheimer's] may endure an illness that

lasts five, ten, fifteen, or even twenty years, and unless they get good

legal help early on, they are likely to become impoverished in the

process.)

Re: CJD Behavior. My mom, too, remained sweet-natured, as she had been

all her life. The only atypical comment/behavior I remember is that one

time she became a bit suspicious, thinking I had left her. (In fact I

had been in the same room all along but must have been out of her

immediate line of sight.) However, she could become fearful (and she

also exhibited the startle relex that several people have alluded to).

If she watched television, we had to monitor what she watched because she

sometimes thought that all the events on the screen were real.

Re: 's hypothesis that longevity might have to do with age. You

may be right. This is what Bernoulli, Masters, Gadjusek, Gibbs, &

have to say [ " Early Clinical Features of Creutzfeldt-Jakob Disease, " in

Slow Transmissible Diseases of the Nervous System, Vol. I, ed. Stanley B.

Prusiner & J. Hadlow]: " There was a significant positive

correlation between the duration of stage 1 and the duration of stages 2

and 3 combined, and a significant negative correlation between the

duration of stage 1 and the age of the individual. " In other words, the

older the individual, the faster the progression of the disease.

Still another researcher [possibly from another article in the same

volume or in Advances in Neurology, Vol. 38--I can't put my finger on it]

classified CJD into three types based on the duration of the

illness--type I having a duration of a few weeks, type II having an

average duration of seven months, and type III having a duration of 2-5

years. I don't think the types had any relation to the mode of

transmission (iatrogenic, familial, or sporadic), but I don't remember

off-hand if the researcher went so far as to theorize about what may have

caused the differences in the duration of the disease.

Elaine