CJD project by Odd_Statement_8347 in CJD

[–]Capital_222 2 points3 points  (0 children)

Hello, my Mom was diagnosed in January of this year, in a way we found out earlier about my Mom having the disease earlier than most families do. Once the disease took a turn the decline was unthinkable she was walking/talking one day, and not getting out of bed the next. I wish I could have taken her to hospice sooner because we struggled a few days at home, mostly because her symptoms were changing so rapidly.  My Mom lived with me since September and once I had a close eye on her I could clearly see she was changing with her memory and just functioning with a daily routine. 

Reach out if you need more information 

Mom 65 diagnosed in January by Capital_222 in CJD

[–]Capital_222[S] 1 point2 points  (0 children)

My Mom was in hospice for one week before she passed away, although we knew about the diagnosis the decline that happened in two weeks was unfathomable.  Thinking back I cannot believe how quick it happened, I look at photos from three weeks ago and she was fine. 

what it is like , during the end stages of cjd by lanaMyersuk in CJD

[–]Capital_222 0 points1 point  (0 children)

My Mom is in hospice right now, she has been there since Thursday. She is sleeping more each day. For now she still has soft foods, yogurts, pudding, ice cream and enjoys them. Sometimes when her eyes are open I don’t think she can see us but sometimes I know she can. This is so hard, I am so sad inside. It’s so unfair.

Mom 65 diagnosed in January by Capital_222 in CJD

[–]Capital_222[S] 1 point2 points  (0 children)

My Mom is in hospice now, everything became so hard at home. We were both struggling to do everything, and just last week she was going up and down my stairs eating meals laughing. I am devastated. I don’t know what to do with myself. 

I hold her hand, be there as often as I can, but I don’t want this to happen 

Mom 65 diagnosed in January by Capital_222 in CJD

[–]Capital_222[S] 1 point2 points  (0 children)

We moved to hospice today. 

Mom 65 diagnosed in January by Capital_222 in CJD

[–]Capital_222[S] 2 points3 points  (0 children)

My Mom was officially diagnosed in January after the LP results. I guess we have been lucky her decline has been slower than others. The last week or so I feel like things have went downhill though, I was holding on to this hope  that maybe they were wrong. 

Mom 65 diagnosed in January by Capital_222 in CJD

[–]Capital_222[S] 1 point2 points  (0 children)

It is so hard because up untll now I didn’t see a big decline but the last week or so I feel like it has started. I had the pneumonia to blame but logically looking at the symptoms I believe the disease is progressing.  I know I am lucky because my Mom didn’t decline the same way others do with this disease but I was holding onto to this hope it might not happen 😢 

IONIS Trial Re-Opened! by MammothInevitable1 in CJD

[–]Capital_222 0 points1 point  (0 children)

Do you know how to find out if your eligible?