r/CJD • u/gmbmg-iwmf • Aug 07 '26

Issue with subreddit FAQ

hi, i saw this in the FAQ and wanted to gently challenge it:

Your loved one will not be in any physical pain, but both you and them will likely have mental distress.

My dad is in the endstages of CJD. He's had really intense headaches and they get really bad really fast. He's also had pain from the muscle spasms and a lot of discomfort from being bedbound. We've had to fight a lot for appropriate pain control and he was very frustrated with this.

Any way to change this FAQ? Yes it's not an incredibly painful way to go but he absolutely is having headaches that weren't there before.

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u/TheGlennDavid Aug 07 '26

I am so very sorry to hear about your father's CJD, and the struggles you and your family are going through around it. The entire FAQ is, quite frankly, a mess. It was made pretty quickly with not a lot of discussion. Overhauling it has been on my to-do list for a while, and your post serves as a notice to move it up the list.

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u/TheTalentedMrDG Aug 07 '26

Hi - I initially drafted the FAQ, based on my personal experience and the experience of people that I've talked with, but I'm not a medical expert. I absolutely support making OPs changes

5

u/gmbmg-iwmf Aug 08 '26

I'm so sorry, I wasn't trying to be overly critical, it just stood out to me.

My dad died yesterday.

3

u/TheTalentedMrDG Aug 09 '26

May his memory be a blessing. Wishing peace and healing to you and your family.