Fwd: [Fwd: CJD and my Mom]

[Guest guest]

Terry:

I believe I have contacted Patti before... email address is:

berrymoon@...

If this email address is correct, please let me know. I want to write

her again and explain why her father is in denial and that, at this point in

time in his life, he is asking God for strength and hope. That is not

unusual... I believe I speak for all members who lost their spouse to

CJD...we never truly gave up hope until the very end. I knew JD was going to

die... but I loved him dearly and wanted to have hope... even though I knew

he was going to die and that there was absolutely NOTHING that I could do to

save him (heal him) from this dreaded disease.

When you love your spouse... you do not want to lose them. You pray

to God to give you hope and strength and you ask Him for healing for your

spouse. My heart goes out to her father... he is losing one-half of his life

also and is just not ready to give her up. I believe he will comes to terms

with the inevitable and remember that true love for someone means that you

are willing to let them go.

When I write to Patti, I will pass it thru the group... maybe it can

help and comfort others who are losing their loved one to CJD.

Thanks for passing this letter on thru the group, Terry. You have a

compassionate and caring heart. May God bless you for reaching out to help

others.

I am personally very proud of you and your continuing efforts.

Dolly

========================================================

In a message dated 5/5/99 12:44:57 PM Eastern Daylight Time, flounder@...

writes:

<< Subj: [Fwd: CJD and my Mom]

Date: 5/5/99 12:44:57 PM Eastern Daylight Time

From: flounder@... (Terry S. Singeltary Sr.)

Reply-to: cjdvoice (AT) onelist (DOT) com

To: cjdvoice (AT) onelist (DOT) com

-- I am passing this on, with

permission from one of the daughters of this Mother, who has been

diagnosed with CJD. It's truely another sad story. I am sure, in time,

she will speak to us, about her Families horrible experience with this

hideous disease. I thought her letter was very moving and really hit

home, so I ask her if I could pass it on. Some of you may want to write

her and give her support, she may or may not write back, but either way,

it will give some comfort and support for Her and her Family, and that

is what CJD Voice, is all about.................

Terry/MADSON

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

Dear Terry,

Thank you for your kind response to my posted message at CJD Voice.

It's comforting to know that there are people who are passionate about

speaking up for so many of us who are silently suffering the onslaught of

this disease.

Last May (on Mother's Day) my siblings and I first became aware that

something was " not right " with our mother. She had been grieving over the

loss of her 91-year-old mother who had died suddenly in a car accident

several months before. Some of my mother's short-term memory loss and

confusion was blamed on stress and grief; but, by August when she was

repeating herself constantly and then ephasia (Aphasia?) set in and she was

having trouble connecting the right word with the objects, we knew she was

in deep trouble. Her 'family doctor'said it was grief and anxiety related

and prescribed anti-depressants. As you have probably heard many times from

other CJD families, we went through many weeks of doctor-visits, multiple

phone calls to the doctors from each of us and it wasn't until the middle of

December that we got her to the specialists in Houston. After two rounds of

tests the same diagnosis of CJD was made. Seeking medical attention for the

appropriate tests was aggravated by our father who has lived in complete

denial until the last few weeks. Hospice has now been coming to care for my

mother everyday and the latest report is that they estimate " she probably

has another 6-8 weeks. "

It is difficult to believe Mother's body can survive that much longer,

especially since her spirit has been traveling to the other side for many

weeks now. As her family, we have decided to let her die

at home with no technical support that would only postpone the inevitable. I

have a sister in Houston who is able to visit 2 or 3 times a week (I live in

Austin so I see her less), but my father is the main caretaker for her. He

is still trying to feed her pureed foods, has functioned FOR her for several

weeks now, and is still believing that " God will heal her " . The rest of us

are simply praying that she will be delivered soon.

They live just north of Houston (many of our friends and family live in

the Galveston Bay area though)and the Hospice in that area is wonderful.

Everyone has been so kind, and wise in dealing with my old Marine Corps

daddy! And yes, we have been in touch with at least one department at the

TDH, here in Austin in the office of communicable diseases. It was a strange

little serendipity that Dr. Kate Hendricks at TDH is a long-time family

friend and my husband and I visited with her and her associates back in

February after the CJD dianosis was made. I gave her the names of my

mother's doctors in Houston and Kate, being familiar with them, said she

would contact them.

Excuse the length of this letter, but my sibs and I have all been

curious as to why the doctors have not asked, wondered, probed, nor tried to

figure out HOW my mother got CJD. Other than asking, " Did she have surgery

recently, or travel outside the US? " they have merely said it is " Sporadic "

and they don't seem to care much about the reasons why. We've tried to

think of everything possible,including the fact that she had cataract

surgery about 3 years ago. For awhile my sister was frantic to find out who

else might have had eye surgery around that time at the same clinic and

perhaps see if anyone else has contracted CJD....but again, we haven't had

much energy to pounce on some of these suspicions. Personally, I quit eating

beef a long time ago because I became convinced that too much was inherently

wrong with our beef consumption. It might have absolutely nothing to do with

my mother's illness and inevitable death, but I will never be able to eat

another hamburger as I live!

So....thanks for inviting me to write you, although you probably weren't

expecting such rambling. You just caught me in a week where I actually have

a couple of free hours. Again, thank you for caring out of your own loss and

suffering, and for your ongoing work.

More power to ya!

Patti