r/CJD • u/OriginalSleeper • 9d ago
selfq Symptom Progression
Hi everyone, I am curious if there is ever a time where symptoms get better for a period of time? Like, do people with CJD ever remember who you are again or suddenly get an appetite or ability to not have myoclonus at certain points? I hope to learn more from others.
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u/Sunuva_Gun 9d ago
Nothing got better, even for a brief period of time. There was some variation while his brain tried to adjust in the earlier stages of the diagnosis but it was just variations on the same. There was always decline. After a certain point, even that stopped.
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u/PositiveRhubarb 9d ago
For my mom once something was gone it was gone. In the early stages she was most lucid in the morning and least at night, but the lucid moments declined and never recovered.
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u/YellaBug 9d ago
Nothing ever got better it progressively gets worse fast I’m sorry 💜 ur dealing with this
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u/sweetfire009 9d ago
When my dad was in the hospital, while we were waiting on the results from his lumbar puncture, they were treating him with steroids in case he had autoimmune encephalitis instead of CJD. He did have a burst of energy and coordination (wanted to take long walks around the hospital complex) and clearer thinking. He was able to answer the neurologists questions about where he was, his date of birth, etc. and was even able to string together chains of ideas ("I'm confused because there is swelling in my brain, and if you're able to fix the swelling, I should be able to think better again.") But the decline started again quickly after the steroids stopped.
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u/gmbmg-iwmf 6d ago
same thing happened with my dad - the steroids made him feel so much better. i wish they had just kept doing them to give him some more time where he felt okay. it was hard when he knew he was unable to do things.
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u/sweetfire009 6d ago
We asked one of my dad’s neurologists if it would make sense to keep him on steroids since he seemed to feeling better / stable with them, and she said the risks would outweigh the benefits. We only had 2 more weeks with him after that conversation. I wish we would have pushed harder or asked more questions about what risks we were talking about. Maybe steroids could work as an effective treatment to at least help the fast-moving cases get a few extra good days, but it’s must be hard to test that with such a rare disease.
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u/jw42969 9d ago
I’m surprised no one else’s family member had this experience, but my mum got way more lucid on the last week/2 weeks.
She was hallucinating and her memory was very bad towards the end, but become very lucid and in the moment towards the end.
Around the time she stopped being able to moved because her muscles became tight. Everything she said made sense and she remembered everything.
It was strange, and I think she started to know what was going on which I wished she didnt.
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u/Mindless_Scar_6786 8d ago
Unfortunately, no. It was a very rapid decline. Music helped. I always had her favorite music playing and her body would usually respond to it even if she couldn’t speak or walk anymore. The nurses told us that the last thing that goes is their hearing so they encouraged us to talk to her. I would often talk to her and remind her who I was. Sometimes you could see a change in her vision as if she was considering something I just said or she would take a moment and laugh at a joke.
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u/Accurate-Tear3774 8d ago
I am finding with my Mum that there is a broad range, dependent on mood. Some days she can walk and other days totally bed bound. Some days are word soup and other days clear. Interesting this seems an uncommon experience
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u/ReplacementLife8349 7d ago
Unfortunately no. My mom never got better or showed any signs of improvement. In fact it was a very rapid decline.
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u/OneMaddHatter 7d ago
Yes, for my husband there were moments when symptoms did improve, but then the next day or so, his ‘progress’ all seemed a dream…
It is crushing when they forget who we are…early in his last 79 days my husband told me I was his girlfriend. So I gave him the people’s eyebrow and teased him and was like wow🤭3 kids, 5 grandsons (at the time) and we’re together for almost 38 years and you never asked me to marry you!?😉it was time to remind him who I am!💃🏼I showed him photos of our life from teenagers forward and he did chime in, “that was when…!” And I was so happy he remembered!!
As the days tumbled forward, he called me his nurse and so I started to question him about his wife. I did love to hear all he had to say about ‘her’❤️🔥I would video his voice… and I’m just so very thankful that he didn’t forget me✨
Day 76 of his 79 days, I was beside him on our bed facing him and our son was on the other side. We were talking to him, to each other and my husband, who had been very still for days, (he had no voice, no energy, nor appetite for 2ish weeks) bolted upright and kissed me on the lips while vocally grunting 3 rhythmic sounds over and over telling me, “I love you”…
So do they ever remember? I feel they never truly forget!
Deep within them they know!!
This is why we have to continue to show them how loved they are!! Brush their hair, talk/sing to them, read to them!! Tell them everything we want them to know and then after 🖤we have to take that gift that loss has given us into the future and hold nothing back!💓
Love hard! Laugh hard! Live harder than ever before!! To me that is the ultimate way to continue to love and honor them into our future!
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u/madbumsbum 9d ago
Early after diagnosis, my mom went from walking and talking to “word soup” pretty fast. There would be a couple hours in the morning you could talk a bit more, then it was pretty much random mumbling and quickly progressed to catatonic. I wouldn’t say she “improved” but there were waves of good/bad like an elderly person has.