One year ago I Sept 6th I Creutzfeldt-Jakob Disease I Grief I PTSD

Thank you for the human story behind the disease. My lovely sister is undiagnosed specifically yet but all appears to be this. Helplessy watching someone being dismantled mentally and physically bit by bit every day without pause is heartbreaking 😢. Feeling comforted that others understand this particular struggle and that we can share our grief with one another. Thank you for your story. It helps me cope. Update: Thursday May 9,2024. My beautiful, sweet sister "Lulu" died today from CJD. She was handicapped mentally so had more of a child's mind. Wanted only happiness, good friends and love to give and receive. This "villainous" disease stole her away bit by bit especially in the last 8 weeks of her life. She was admitted to hospital lately for more tests but had complications. Admitted to ICU where she declined more. We made the decision to remove oxygen and food tube and let suffering end. She hung on for nearly 26 hours before "death" relieved her from further suffering. Comfort drugs were given throughout thankfully. Her brain will be donated to prion clinic as her contribution to science and medicine. Hopefully she will help lead to treatment "one day" to prevent this nightmare disease from hurting others. Her enduring "beautiful" gift. I'm broken right now but am "proud" to have had her as my sister.

My best friend of over forty years was diagnosed with CJD two days ago. I am heartbroken. To see her rapid decline over the last few weeks is gut-wrenching. She's gone from a vibrant, intelligent woman to someone who can no longer hold a conversation & can barely do anything for herself anymore. I know the next few weeks, maybe months are going to be traumatizing & I can't imagine how she is feeling in her lucid moments. It's a cruel disease, one I wouldn't wish on anyone. Everything Laurel said about her mother is happening to my beautiful, gentle friend. all we can do now is be there for her, show her all the love we can & make the time she has left as good as it can be & help her to go gently to the end.🥺

Thank you for sharing. My brother just died from CJD, his funeral is in a couple of days. It was sudden and shocking for all of us. But we rejoice in knowing he is with the Lord. I wish you God’s comfort and peace. I will look for the rest of your videos to hear the rest of your moms story. She sounds like a great person.

Hi Lauren, my nightmare started on September 12, 2019 when I took my mom to the ER for the first time. For all these months I was looking for a story that I could relate to so I don’t feel so alone on this, and I just found your videos. Thanks for sharing your story, mine is so similar.

Laurel, Thank you for posting and i am so sorry about the loss of your mom. I hope you get beyond your grief i know how hard it is. Your video was very helpful to me. My wife had balance and falling issues for a year or two with no explanation and no other real symptoms. At thanksgiving in 2023 my wife started having unexplained vision problems. In December she drove to an ophthalmologist who looked at her eyes and said she had a torn retina. A visit to the retina specialist the next day did did not help to explain how bad her vision was getting. More visits to multiple ophthalmologists and retina specialists in January did not help. My daughter and i finally took her to the emergency room for help on February 4th. She was checked in to the hospital for a battery of tests. Three days later i spoke to the neurologist there who told me that he had seen five cases of CJD in the past and thought my wife may have CJD. He told me that a diagnosis of CJD could take months and "often the patient is deceased before the diagnosis comes back". My wife was in the hospital for more and more tests for almost two more weeks. Finally, two weeks and two days after entering the emergency room i was given the diagnosis of CJD. We took her home the next day, February 20th, for home hospice care. She died on February 26th. My children and i know your pain and we feel it. Thanks again for posting your story. I wish you peace, hope, and someday joy.

So sorry for your loss. Lost a friend in 2018 to CJD.

Thank you for being brave enough to experience and explore your and your mom’s story before others. Bless your mom where in Heaven…. May the Lord comfort you re your dear mom.

I don’t know if you’ll ever see this but l went thru a nearly identical experience. Just under its been 1.5 yrs and still feels like it all happen yesterday. Worst 10 weeks of our life.. I’m learning to live with it but struggling too

Laurel, it is beyond brave of you to share your mom’s story and to talk about the road you continue to travel in your grief journey. Yes, you’re right, grief is hard. It isn’t linear, comes back to hit us when we least expect it. I’m so glad that your dad is recovering well from his surgery and pray that he continues to get stronger each day and that the reports bring positive news. God bless you and your family ♥️

Hey laurel , thank you for sharing this video. Currently awaiting on cjd tests for my mother- the writing not looking like hers, the inappropriate laughter, loss of activities of daily functioning, to no longer eating and speaking within 4 weeks has been a wretched experience for my family. Thank you for your video

What beautiful testimony Laurel. We made us feel like we know your mom. She was quite a firecracker. I am so proud of you.

It's so hard I feel lost

Hello Laura I understand what u felt I went threw the same thing with with my best friend the best grandma in the world.. Loved her so much because she never gave up on. And I always said if something ever happen to her. Not that I wanted her to die with this awful disease that I would take care of her. Because she was there always there for me when I was in the streets and in prison when nobody else was.. Also God was with me.. I just miss her so much but I know she is in a better place looking down.

My uncle just got diagnosed with CJD & it feels like a living nightmare. This story sounds very similar.

The only way that CJD could be not fatal or increase the chances or length of the span of life is remove the parts of brain but that would be bad you might not remember you family your name or personality

My mother died of this . 37 yrs ago No one knew what it was it ended up her brain matter was sent to England and they knew what it was right away.! I live in a city with a very well known hospital but didn't know sent it to another well known hospital then sent to England.She was perfectly healthy before.But she did live 1 and a half yrs One of the longer patients live.She had gone to Aruba and came back sick then that followed !! Very devastating disease and Scarey to watch.😢

I would love to chat with you more regarding this. My mom passed two weeks after being diagnosed with CJD in December. It was so sudden, I could definitely use a should to talk with and on.

I doubt she felt any pain, in the end. That’s just the nature of the way things are with the brain, you don’t feel pain even if you were to be stabbed in the brain itself, but anywhere else in the body you would feel. Sporadic CJD is tragic. It pops up one day, and then not long after, you’re losing your memory, you’re having ataxia, you’re confused, having seizures, coma etc. No cure. Misfolded proteins cannot be fixed. It’s one of those things in this world that are one of those inevitable diseases, such as rabies, naegleriasis (brain eating amoeba), and some other ones. Having this disease is essentially akin to having mad cow disease. It’s very sad though. I’m sorry to hear about your story

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My mom was diagnosed with CJD in 2014.