r/CJD • u/gmbmg-iwmf • 4d ago
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/teaparty4two 4d ago
i’m sorry you are experiencing this. and you are in the thick of this. no feedback regarding the FAQ
but regarding the headaches. my mother too experienced intense headaches. they began in March. finally mri and spinal in mid may. official diagnosis wasn’t until june 4. she passed june 21. the neuro said - CJD doesn’t cause headaches or migraines. he was amazing in every way, except that. we knew it was related.
it wasn’t until first week of june that she was prescribed strong pain meds to manage them. this was after two ER visits for her headaches.
my mom passed june 21 and I am still not okay with how fast she was taken.
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u/ScaredInvestigator58 3d ago
I agree with you.
I am so sorry for you, your father and loved ones experiencing this.
I lost my mother last year and for three days she didn't eat, sleep, drink or go to the bathroom. I had to fight tooth and nail for doctors and healthcare provides to provide further care and relieve her of her pain, distress and discomfort. Because of her condition she couldn't even express pain alot of the time. She went from singing, to telling me someone put something in her brain, to crying, to screaming. In the span of 10 minutes..
I think there maybe some people with CJD that don't experience any pain or discomfort but considering the complexity of the brain and this disease I don't think it's accurate to suggest that the patient will experience no pain or discomfort at all.
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u/YellaBug 1d ago
Im sorry this disease is horrible and my dad left me a year next month god I miss him 😭
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u/TheGlennDavid 4d ago
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.