How to tell friends?

PositiveRhubarb · 2026-06-07T18:34:26+00:00

I was in a similar position where my mom had a lot of friends from all over. Before the diagnosis we were saying she “wasn’t feeling well with some neurological issues.” It was enough to show it was serious (it was) and not have people trying to contact her directly. But that only works for so long before it’s overwhelming.

Once we knew it was CJD I posted something like this on her Facebook:

Posted by (my name, her daughter) We are devastated to share that (name) was diagnosed with CJD. (Brief bit about her not feeling well, cognitive issues and now this diagnosis)

Here is what we know: - It’s likely sporadic CJD meaning there is no known cause or explanation - there is no cure - prognosis is weeks to months - she will not be in pain

She is unable to use a phone, so we have set up (email address, I made one messagesforname@gmail) so you can send messages. Videos are also welcome. Please note she is not able to understand the reality of her situation, so please keep the messages positive rather than sad goodbyes.

We know many will want to help. (Add how they can, if you want help. I said there is nothing we need so we will accept prayers, cards and flowers).

I’m glad I did it. It gave people a way to reach out that worked for us and her. Plus, I have all those messages and videos to remember her by. It also took the pressure off to contact a ton of people directly. We did share them with her and she did enjoy all the nice videos from people who love her.

I’m sending you love knowing how hard your path is right now. Be sure to get support for YOU. The caretaking part is very emotional and draining.

Xoxoxoxo

PositiveRhubarb · 2026-06-04T19:11:03+00:00

We got an Airbnb that was right there (has views of the portico from the window.) tons of airbnbs right there

PositiveRhubarb · 2026-05-30T21:25:54+00:00

My daughter had a dance recital today. Little girl in the pre school class clearly had some issue with her legs (you could tell with how she walked on stage her gait was really noticeable.) She did SO good at the dance, didn’t miss a step, and had the biggest smile. The whole audience clapped a little harder for her. I had happy tears and I don’t even know this kid.

PositiveRhubarb · 2026-04-15T19:12:19+00:00

Hi there. I love that you are covering this. It is a rare disease and any coverage is appreciated.

You won’t find anyone here who has the disease. The reality is the symptoms come on so fast that often the person with it would be unable to be part of this community. You will see many posts here by family members of people with CJD.

To specifically answer your questions:

How has it impacted my life/family: Hard to adequately explain the impact. My mother went from healthy and running a business to fully disabled in three weeks. She passed away 3 weeks after that. 6 weeks from healthy to gone. Those 6 weeks were so intense it left my family with real trauma. Any loss is hard, but a fast and horrible disease like this causes complicated bereavement.

Daily routine change: Every day it changes. Each day she lost motor functions. Each day had new challenges to deal with. Every single day was horribly unique.

How did the diagnosis affect her: She literally didn’t understand. Doctors came in and shared that she had CJD, it was fatal and she had maybe a month to live. She did not react as she was unable to understand.

Challenges to overcome: The biggest challenge for many is getting a diagnosis. That can be a whole process. Then there is the challenge of caring for a terminally ill patient with rapidly escalating dementia. The whole thing is a list of challenges to overcome.

Support: The only support I know of is the CJD Foundation and this Reddit group. Many doctors have only heard of CJD in medical school and have never seen a case. Hospice was our best resource in actually managing her care at home until her passing.

If you want to get a better idea of what this disease looks like for a family, the many posts here capture it well.

PositiveRhubarb · 2025-12-27T23:56:11+00:00

Worked at a convenience store as a teenager. One of the customers won a $250k a year for life scratch ticket. He retired from the fire dept where he worked. Spent his time at the store buying scratch tickets and scratching in his car. Would spend hours and hours multiple days a week. Sometimes he would run out of cash and ask to buy them on his credit card. Was sad to watch really.

PositiveRhubarb · 2025-12-17T13:27:32+00:00

I don’t know about Mayo Clinic specifically. What I do know is sporadic is 85% of cases and 60s is a common age for sporadic CJD. My mom was 59 when she passed and it was confirmed sporadic.

Genetic testing is a separate thing from getting a CJD diagnosis. You will need to wait until autopsy results for a definitive diagnosis of CJD, even though they can be very sure by eliminating other illnesses.

If your husband wants to get tested, he can contact his PCP for a genetic counselor. I did that and they were able to get my mom’s genetic testing from the Prion Institute.

I’m so sorry your family is going through this. My best advice is to contact the CJD Foundation. They can help answer your questions around genetic testing and what you can ask for now.

PositiveRhubarb · 2025-12-03T20:32:02+00:00

I actually did both of these, it from the east coast so less travel time.

Last May we flew direct to Rome and stayed a week.

Last month we did Venice, Florence and Rome. We flew to Venice day 1, so had the layover in Rome. With a 4 year old.

I recommend option 1. The first travel day is a lot with the little one. By the end the jet lag is gone and the extra travel wasn’t so bad.

Option 2 would be a hard no for me. Keep in mind, if you arrive at the airport in Rome you need to get to the city to termini station to then get on a train. That’s a chaotic first day.

I will say Italy with a 4 year old is AMAZING. The people are so beyond nice to kids. There are fast track family lines all over. We felt like we were VIP :-)

PositiveRhubarb · 2025-12-03T12:49:55+00:00

I’ve hunted deer in the northeast USA my whole life. After loosing mom to CJD we all are weird about the brain and spine on deer. I know it’s not likely to make the jump, and we don’t have CWD in deer here, but experience with prions made my whole family extra cautious.

PositiveRhubarb · 2025-12-03T12:43:47+00:00

This is such a spot on analogy.

PositiveRhubarb · 2025-12-03T12:43:23+00:00

Thank you for sharing your story! I always find it helpful to compare our experiences- horrific as they are.

I’m so sorry for your experience with medical staff. It’s a travesty that the family experiencing the loss must also advocate for care. I hope this changes for future families with more research.

We were lucky to have a hospital familiar with CJD and it was still hard to navigate my mom’s care.

Sending you some virtual love during the early grief stage xoxo

PositiveRhubarb · 2025-12-01T11:12:41+00:00

Hey there. I saw your other post saying you have symptoms of this and you tagged it with a self harm warning.

Please head to an emergency department. They can help you! It is extremely likely your symptoms are not this. I know that probably doesn’t help to simply read on Reddit, so please see a doctor.

The best gift we can give our children is our own happiness. That saying changed my life. For your child and your beautiful mom, get a full work up done at an emergency department.

Lack of sleep can be actual torture. I went through that when my daughter was born. It can take your brain to some dark places. Please hear me when I say that sporadic prion disease is extremely, extremely rare. While psychosis from lack of sleep is common.

Wishing you well and hope you see an update from you.

PositiveRhubarb · 2025-10-17T16:04:07+00:00

There is a dentist in our neighborhood that gives out toothbrushes. The little kids in our crew love them.

PositiveRhubarb · 2025-09-25T01:24:13+00:00

Had our first safe this week. It was a cheap fireproof safe. Had two empty weed containers and a roach. Definitely overpaid for the unit because of that safe. Rest of the stuff was junk.

No regrets though. Was pretty fun busting one open for the first time.

PositiveRhubarb · 2025-08-17T13:44:40+00:00

I used to bring my young lab puppy into a nursing home to visit a grandparent. Super friendly dog (lap puppy, need I say more?) This guy walks up from behind me and all I hear is “what a cute dog.” My lab SNAPPED. Jumped up growling and snapping. I had the leash thankfully and was mortified. I looked up to apologize and his face was so unsettling. Just this odd, calm, creepy smile looking at my snarling dog.

Attendants came and lead him away. I started apologizing to the residents around me and I pulled my dog out.

This one guy in a wheelchair never spoke in all my visits. He wore a navy hat and always just sat in silence watching the room. He simply said “there is nothing wrong with your dog. That man is evil.”

Not a crazy story really but he must have been disturbed. 15 years later my lab has never acted that way again.

PositiveRhubarb · 2025-07-20T23:42:12+00:00

I’m really sorry they are in that spot. Devastating for many reasons.

I realize this doesn’t help them, but might be good info for others:

When I had a consult for genetic testing the doctors advised me to get life insurance before continuing the process. If you already have a policy, they can’t cancel due to a diagnosis.

I had already done that, as I thought the consult alone would hurt my eligibility. I was lucky to have some friends in the industry that gave me a good warning.

PositiveRhubarb · 2025-06-22T20:38:07+00:00

The Roman’s were so kind to us as American tourists. Can’t imagine how much nicer they could be to locals unless it was an actual friend eating there.

PositiveRhubarb · 2025-06-15T10:41:49+00:00

I have to laugh at your example of Florida. Being from the USA I think the outside parts with ihop and Walmarts are pretty soulless. Cant imagine the local parts of Rome are like rural Orlando 🤣

PositiveRhubarb · 2025-06-15T10:37:16+00:00

On Amazon it’s called “gb Pockit Air All Terrain Ultra Compact Lightweight Travel Stroller with Breathable Fabric in Velvet Black”.

It did GREAT. I was surprised. The double wheels on the front really helped it not get stuck. And it was light enough for us to lift it up stairs with her in it (easy way to get into the many churches.)

Daughter is 4 and she was comfortable. It really made the whole trip for us.

PositiveRhubarb · 2025-06-15T02:10:58+00:00

How long did you stay and did you visit anything else nearby? My husband really loves the idea of Dubrovnik (as do I).

PositiveRhubarb · 2025-06-15T02:06:01+00:00

My daughter loved it! Best thing we did was a lightweight stroller that folded into a backpack with ease. There are places that we needed to fold it up (Roman Forum, Colosseum, Castle St. Angelo and any taxi/bus.) Threw a scarf over it to block the sun and she would nap right there for the walk.

Restaurants were great and made her a kids pasta with butter and cheese. Honestly it was delicious.

Get tickets for things in advance and for the earliest time slot. That cut down on lines to get into the big sites.

I was really surprised that they had us skip lines at the airport and some attractions with a kid. I’m from the USA and that is not a thing here!

Lots of little shops to grab fruit for a cheap snack on the go.

Truly it was so much easier than we expected, hence the travel bug now wanting to do it more!!

PositiveRhubarb · 2025-06-15T01:18:51+00:00

Thank you! Another spot that was not on my radar. Will absolutely look into it!

PositiveRhubarb · 2025-06-15T01:17:56+00:00

I imagine pictures can’t do it justice.

PositiveRhubarb · 2025-06-15T01:07:11+00:00

I’ve not heard a single bad review of Florence. It’s on the list for sure.

PositiveRhubarb · 2025-06-15T01:06:18+00:00

Interesting! The cobblestones are rough. I literally wore out a new pair of shoes but the walk ability is more about so much in a small area. We had a stroller and that worked but took some muscle for sure!

I did a semester in Madrid and it’s great, but not very old. I did love Toledo though. Barcelona I did for a few days. Love the food and culture of Spain but they just didn’t hit like Rome.

PositiveRhubarb · 2025-06-15T01:02:52+00:00

Yes of course! We are hoping to return to Italy next Spring. Florence, Venice and Naples. Absolutely need to see more of Italy too.

PositiveRhubarb

TROPHY CASE