r/CJD

My aunt had symptoms starting on 3/27. For weeks after, my mom was texting and talking on the phone with her and other than some hearing loss she seemed fine. The last coherent text my mom got from my aunt was on Mother’s Day. I am so lucky I just happened to be traveling to the part of the country that my aunt lives in (we live on opposite coasts). I got to visit her to say goodbye today and it was so hard. I think all I can do is listen to everything

1. My uncle mentioned she was hard of hearing and that we needed to talk loud and slow

2. We saw her today and it was so much worse than that. She couldn’t walk on her own. She couldn’t form sentences. She forgot words or used wrong words or nonsense words

3. She had a phone app that transcribed what we were saying, but reading seemed too hard for her and she didn’t understand she had to keep scrolling once the text reached the bottom of the screen

4. My grandma is 96 but not doing well. We don’t know if/how we should tell her. My aunt is only in her mid 60s

5. Her husband does not give her a chance to talk. I could tell she was trying to speak but just needed more time. He didn’t give it to her. He dominated the conversation when we were there to see my aunt

6. I think he makes her feel bad. She apologized after he mentioned he had to miss a meeting to stay home and care for her. He talks about her in front of her and I think it embarrasses her sometimes

7. My uncle has only told my mom and his kids. There are two other sisters who have no idea my aunt is dying! Time is precious and my other aunts are being robbed of the ability to say goodbye to their sister

8. Perhaps worst of all - MY UNCLE HAS NOT TOLD MY AUNT HER PROGNOSIS. My aunt keeps saying “I’m going to get better.” She has no idea and therefore no chance to say her goodbyes or anything

I hate the way my uncle is handling this situation. I didn’t like the way i saw him treat her and i am enraged that he is hiding this from everyone. I know part of my anger is misplaced grief but i also know that some anger is appropriate in this situation.

I’ve made my thoughts on all of this clear to my mom. I think she can tell the sisters at least.

Thanks for reading. I am just devastated and shocked and angry

My beloved husband passed away from CJD on May 4th. I received 10 death certificates that state the immediate cause of death was "diffuse encephalitis". At least 2 neurologists told me that he definitely did NOT have encephalitis, that he had CJD. Test results of spinal fluid sent to Mayo Clinic came back positive for CJD.

If this type of thing happens often, then the statistics for CJD must be way off. The certificate also states that time of onset til death was months. It was almost exactly 5 weeks from the first symptoms.

As a significant condition contributing to death they added "protein-calorie malnutrition". In about 3 weeks? I doubt it.

Who enters this information??? I have a call in to find out how to get this corrected. Has anyone else had a similar experience. This is just one more thing on top of everything else that needs to be done. It is holding up notifications to banks, etc. Not to mention trying to get over the nightmare of those 5 weeks and dealing with the subsequent heartache and grief.

My mom died tonight from CJD- almost 5 weeks after her diagnosis- which we got the same day she went into full time care. She had steadily declined for 6 months until her diagnosis, but she had fallen & gotten a concussion and for many months that was the focus.

She was 81. It is not lost on me that we were lucky to have so many years with her.

I’m still dumbfounded by the speed of this disease. She was still walking on Easter, stopped eating and responding 5 days ago, and today it’s over.

I’ll tell people it’s in the same family as Alzheimer’s & they think they know. I could never have understood the speed of this disease until I witnessed it.

I’ve been having really odd insomnia for months like literally my brain won’t go into sleep mode, and now I’am noticing my reflexes and co-ordination feeling off/worse and walking feels like a chore suddenly.

In Australia Victoria,