Not what I wanted to hear last night.... - PeachParts Mercedes-Benz Forum

ramonajim · #1 08-22-2013, 02:15 PM

.... Uncle Ron - my dad's brother - was diagnosed with Creutzfeldt-Jakob Disease yesterday.

75 years old, more healthy than me, damn good shape, sharp as a tack. Couple weeks back noticed some memory glitches. Started having trouble with balance.

Expected to lose what is left of his memory within 2 weeks. Not expected to survive more than a few weeks, maybe a few months.

Ron was the one sane, sound, genuinely good human to come out of either of my parent's families. Looks like I'll be heading to Kansas rather than home from Ottawa.

RSVP status for The Great Chad Get Together now TBD for Darling Wife, Ed, and me.

sunedog · #2 08-22-2013, 02:37 PM

So sorry to hear that. All my best to your family.

SwampYankee · #3 08-22-2013, 02:46 PM

Damn, Jim.

Sorry to hear that. Thoughts and prayers are with you guys.

Kyle Blackmore · #4 08-22-2013, 06:53 PM

I'm so sorry to hear that Jim, do they know how he contracted the disease?
My daughter was given C-J tainted blood during one of her cardiac surgeries when she was three (she was born with congenital heart disease), the gestation period is 30 years....she has another 12 or so years to wait and see if she gets it.

kerry · #5 08-22-2013, 09:42 PM

Very sorry to hear that. Aren't some forms of that disease congenital?

The Clk Man · #6 08-22-2013, 09:44 PM

I will keep Him in my Prayers.

ramonajim · #7 08-22-2013, 09:46 PM

Quote:

Originally Posted by kerry

Very sorry to hear that. Aren't some forms of that disease congenital?

Very few. Most are in the "we have no bloody clue why you got it" category.

Quote:

There are three major categories of CJD:

In sporadic CJD, the disease appears even though the person has no known risk factors for the disease. This is by far the most common type of CJD and accounts for at least 85 percent of cases.

In hereditary CJD, the person has a family history of the disease and/or tests positive for a genetic mutation associated with CJD. About 5 to 10 percent of cases of CJD in the United States are hereditary.

In acquired CJD, the disease is transmitted by exposure to brain or nervous system tissue, usually through certain medical procedures. There is no evidence that CJD is contagious through casual contact with a CJD patient. Since CJD was first described in 1920, fewer than 1 percent of cases have been acquired CJD.

Source: NIH article

ramonajim · #8 08-22-2013, 09:49 PM

Quote:

Originally Posted by Kyle Blackmore

I'm so sorry to hear that Jim, do they know how he contracted the disease?
My daughter was given C-J tainted blood during one of her cardiac surgeries when she was three (she was born with congenital heart disease), the gestation period is 30 years....she has another 12 or so years to wait and see if she gets it.

I have very limited info at this point. Heading to Kansas Saturday, will learn what more I can.

Kyle, I can't begin to imagine the enormity of living with that kind of knowledge, either about myself or one of my children. My heart goes out to you sir - and to your daughter, her mother, siblings - all who have undoubtedly been affected.

ramonajim · #9 08-22-2013, 09:54 PM

Quote:

Originally Posted by The Clk Man

I will keep Him in my Prayers.

Thank you sir, and to you as well Swamp (and the others I know have and will step up in a similar vein). This is from your heart, this I know. That alone - whether we agree on which books to follow or stories to believe - gives great measure to your sentiment. Please know it is appreciated.

elchivito · #10 08-22-2013, 10:31 PM

Prion diseases are all sort of related. BSE (Mad Cow), CJD etc. Scrapie is a related prion disease of sheep. I have seen it in person and it is not pretty. At least you can put them down so they don't suffer. One can't help but wonder about these diseases' origin and why (or if) there seem to be more of them. None have good outcomes. God bless your uncle and may his passing be as peaceful and quick as possible.

Mölyapina · #11 08-22-2013, 11:01 PM

This must be awful -- I remember when we got the call that my grandfather was in a serious car accident (he hit a Jersey barrier head-on @ highway speed and died nine days later), and when we got the call that my uncle was found dead in his apartment... Those calls are awful, as is what you have to deal with afterward

. I will be praying for you all.

Can't Know · #12 08-23-2013, 12:17 AM

That's just awful. My thoughts and prayers are with you all; may you find a way to push past your grief and cherish the best.

ramonajim · #13 08-26-2013, 01:30 AM

30 some hours with Uncle Ron, Aunt Lovella, 5 of their 6 kids, and a whole slew of grandkids and friends.

Videos from 3 days ago showing Ron walking with a cane, laughing, talking.

Yesterday, getting around ok with his walker. Singing to get the words out because the spoken word pathways are broken.

Tonight, needing the wheelchair to get to bed. Clearly distressed because the thoughts cannot become words.

Still, when I had to say goodbye, a calm comes, he tells me I've always been in his thoughts.

And for the first tome in my life I'm truly happy and honored to hurt for a blood relation.

Jim B. · #14 08-26-2013, 06:34 AM

I am so very very sorry to hear of this. All I can offer is sympathy, my hopes and prayers to you. and truly wish you the very best good wishes in this very difficult time.

In the end, when all is said and done, I truly feel that health, family, friends and happiness are the most important things in life for us. Having turned 65 myself this year, myself, I finally have learned this and nothing will change my views about this.

Your words and actions here tell me that you are a fine man that understands life's most important lessons and your words and deeds prove it.

t walgamuth · #15 08-26-2013, 06:40 AM

Best wishes for Uncle Ron and his and your families.