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By Todd on July 28, 2014 - 10:01am
Tomorrow it will be one month since my mother passed away. I'm still feeling like the last few months have been unbelievable, like this is unreal. I miss my mother every day. I miss talking to her. Everyday I read the posts from others who have gone or are going through this. My heart goes out to you all.
By Arturo de la Cerda (Oxnard, CA) on July 28, 2014 - 12:59am
To any new or returning families...
I am sos so sorry that CJD has affected you. take comfort in knowing you are now apart of a family that will never leave your side and will always be with you... WE ARE IN THIS TOGETHER. Take care, God bless...
By Denise on July 27, 2014 - 3:11pm
My sister in law passed sway this morning; 12 days from official diagnosis. Tissue sample already on way from IU med to Case Western.
By Daisy on July 27, 2014 - 9:58am
I'm so sorry.Your loss would be immense.i lost my sister and the pain is still as real as it was two years ago.Your daughter was obviously loved as only a mother knows how.this disease is so difficult to grasp,even with the passing of time
By Judy on July 26, 2014 - 8:48pm
Carolyn ,I am so sorry and I grieve for you and with you. I have to agree with you , this is the worst thing that has ever happened to me , us , as well . It was extremely hard when my husband passed , just 21/2 years ago. But now with my baby girl, Abbey I just can't except , believe this is all happening again . Like you said about your daughter being the sweetest girl , that is how my Abbey is ! I don't think she has ever known a stranger , nor can I ever remember her ever really getting mad . All I can say is Why ? How could this effect someone so young , she's only 37 ! And so full of life, one day and the next day ,she can't even talk anymore. This is just too much !
By carolyn batten on July 26, 2014 - 4:17pm
On July 22, 2008 my sweet daughter Deena passed away with this terrible disease. It was the worse thing that has ever happened. I still can't believe it has happened. My heart goes out to all that have been affected by this devistating disease.
By Tom Curley on July 26, 2014 - 10:11am
Dolly had extreme headaches in the 90's they did all those tests. She was prescribed Immitrex for the headaches.She had a hysterexty in 1997.
By Tom Curley on July 25, 2014 - 7:41pm
Carrie, thanks for reaching out to me. yes my wife passed after 2 and a half months after finding out. I also believe it's in the beef industry. The conference just left me with more questions about how she contracted the monster. Dolly was a happy person, energry beyond belief. We were married 45 years high sweethearts. They say no about the beef but as I see it its happening more and more. They are covering up a lot. How do you explain the clusters that occur. when Dolly was diagnoised we were living in Ocean city NJ. which is an island 5 miles long there were 3 cases there. I'm angry I'm sorry Carrie soon as the hospital doctors found out it was CJD never saw . would like to communicate on email. Tom
By Carrie Singer on July 25, 2014 - 7:15pm
I am so sorry for your loss of Dolly. He had an older sister by that name, how ironic. I live in WV, near Washington DC. My husband was 74, but we still kayaked skied and hiked. He was a brilliant physicist and literally lost his mind and life in 2 1/2 months. It hit his speech center first, and every day I could notice some words he had lost from the previous day. For example, first it was the name of one of our cats, then it was all the cats names, then the word cat, then all words, all within a few weeks. I donated his brain to prion disease center and they confirmed CJD, but a strange kind related to scrappie. It was first diagnosed at Hopkins from MRI, but even the special neurologists in Winchester(closest medical center) diagnosed him as having had a stroke with aphasia. His correct diagnosis was about 3 weeks before departing.
Was the conference helpful to people or did it just leave more questions?
By Thoma F. Curley on July 25, 2014 - 6:42pm
Dr. Johnny Young, yes I would like for my wife's case Dolly M. Curley age 64 years. A young 64, a Registered Nurse, Legal Nurse, Critical Care Nurse still working for Simione Health Care out of Boston, Mass. This would be an interesting case because of other factors involved. Went on a vacation to Cauroco one night she woke up about 3 in the morning complaining about something crawling in her ear. We came home she went to ear nose and throat doctor who stated she did have a hole in her ear drum from some Bug.On February 5 she called me left message stating she could not find her phone numbers on her iPhone that was a Wednesday she came home Friday from a job in south Carolina. I had her in 4 Hospitals University of Penna. Hospital in Trenton New Jersey. Atlantic Care in New Jersey and Shore memorial in New Jersey. They all believed Dolly had a stroke she lost mobility on her right side and could not talk. I'm bitter Doctor no one can explain how she contracted the Monster. My email is enclosed would like you to contact me. This is a unique case and Yes my wife had EEG's Cat scan MRI XRays before diagnosis. and had them in 4 Hospitals and finally a spinal tap.
By Nicole on July 25, 2014 - 5:03pm
hi everybody I got question about CJD diagnosis to those who have dealt with CJD personally. how was ur loved one diagnosed with this disease? was the diagnosis made by brain mri? did they see clear changes early on? was it EEG reading? how was the final diagnosis made?
By Tom Curley on July 25, 2014 - 1:37pm
Carrie, sorry to hear about your husband how old was he ? and what State do you live in ? My wife Dolly passed away from CJD April 14 2014. You questions are the same as I have with my wife. My wife was 64 years young. I still say it's in the beef. It's happening more and more no one can tell me different. They call it sporatic that's just a word they made up. Then how can they explain the clusters that occur ? I went to the conference in Washington. Did your husbands death certificate say CJD on it ? You are in my prayers. Tom
By Carrie Singer on July 25, 2014 - 1:25pm
My dear husband Dave died of the disease April 7, 2013. I still grope with the loneliness. I spend much of my time wondering how a brilliant healthy man whose parents lived into their 90's, who never had surgery, and no known medical conditions, could "catch" such a dreadful disease and waste away in such a horrible manner. I had hoped to attend the DC conference this year, but was unable to face it. Nobody seems to understand what we and they go through.
Please contact Lori for my email
By Tom Curley on July 25, 2014 - 8:01am
Judy, thanks for replying same thing happened to me with the phone my Wife called me Feb 5 2014 she called crying and confused saying she could not find the phone numbers on her phone. I kept the message it wasn't the phone it was CJD I kept the message also. April 14, 2014 Dolly passed 2 and a half months. Take care you all are in my prayers always.. Tom
By Judy on July 25, 2014 - 12:15am
Decided to check back in ,I feel compelled to see if there is any new news. Tom , we are from Virginia. Daisy , you said your sister fell and hit her head , my daughter also fell during an ice storm we had last winter and hit her head . Her husband and kids said it was anything big , but when you start thinking back it just makes you wonder !! Those of you that have gone through this or is going through this surely must know how sad and helpless we all feel . I would like to just cradle her in my arms and rock her and never let go . Your children are not suppose to leave this earth before us parents , it's just not right !! I have a message on my answering machine from her ,it was Mother's Day and I had gone somewhere , she called twice and I have listened to them twice since she has gotten so ill, I would give anything to hear her voice again .
By Daisy on July 24, 2014 - 11:16am
I check this site regularly and feel saddened with every message.For those of you who have recently lost or have had the dreadful diagnosis handed to your families...I am so, so sorry.I lost my dear sister seven weeks from diagnosis in January 2012.I am a registered nurse and constantly try and source any documentation on prion diseases.The CJD Conference s in October in Melbourne this year,I am hoping for any new progress on either early detection, and of course the dream of a cure.I am particularly interested to see of any collective data correlates with head injuries,as my sister fell and hit her head, resulting in a small bleed....she never really recovered...and was diagnosed approx seven months later...sort f makes me wonder if it woke the dormant prions...her autopsy was sporadic CJD, definite....the saddest, insidious disease I have ever had to deal with.The incubation period can be up to 50 years, so I guess many people die with it, and not from it. Sporadic anything is so hard to comprehend,but as the neurologist said to us when she was diagnosed" why do children get leukaemia ? He said they don't catch it, it can't be caught, so that Left me feeling sad, so rare, so rapid, and so final.There are very few disease these days that medicine simply cannot offer anything to slow the progression,albeit the outcome will be terminal.Again, I wish you all the best, all the strength and hope the time you have with your loved ones is precious
My thoughts and prayers are with you all, I feel so far away as I haven't seen an australian entry as yet.....again, god bless you all
By John on July 24, 2014 - 9:40am
Hi, my name is John and my brother Todd and sister Lisa have already posted about my mother Nancy. I finally feel like sharing with everyone after it has been 26 days since my mother has passed away. I want to say I miss and love my mom, she did not deserve this horrible end. The pain of loss and the feeling of helplessness is truly unbearable. I spent every night with her for two weeks back in early June before she was bedridden and still able to move around with some help.
Those two weeks were the closest I ever felt to my mom. The memories I have with her I will cherish for the rest of my life. I have two I want to share specifically;
First, during one of her late night episodes she got upset and felt someone was trying to hurt her kitties so I followed her slowly down the hallway to help her calm down. She stopped and turned around and asked me, "Are the kitties safe?" I told her that they were and no one was going to hurt them. She looked me in the eyes and for an instant it seemed she understood everything I had just said. She put her arms out, hugged me and started to cry on my shoulder. (My mom had never done anything like this with me.) She told me that she loved me and I was a good boy. I couldn't help but cry myself.
The second story was during another night when I had dozed off on the floor next to her, I all of sudden woke up. The first thought was if she had wandered off and fell down, injuring herself. But everything was OK, she moved around me and was putting her blanket over me. She said "Don't want my little boy to get cold." Even with this horrible disease, Mommy was still there, somewhere making sure her baby was OK.
I miss her so much and wanted to express how much love I felt from her and how important those "moments" can be for each of us. I love you Mom!
By nora on July 24, 2014 - 2:38am
This is from the BBC news website today about CJD:
By Arturo de la Cerda on July 23, 2014 - 12:03pm
I am so sorry to read of your daughters diagnosis. The rarity of this disease is unfortunately underestimated. My dad passed from sCJD 12 years ago. You and your family will be in my prayers. Take care, God bless...
By Tom on July 23, 2014 - 6:24am
Judy, I'm sorry to hear about your daughter. My wife Dolly just passed on April 14 2014 from this disease. I also was at the conference. I still don't know how my wife contracted the disease. We are from New Jersey and Delaware. What State are you from. They say this is rare but I don't see it. It's growing more and more no matter what they say. your daughter is in my prayers.
By Judy on July 22, 2014 - 9:59pm
Where do you start ? Why ?? My daughter has contracted this horrible disease and she is only 37. She has a wonderful husband and 2 beautiful teenage sons. I just can't get a grip on this. My son-in-law and my brother-in-law and sister all went to the convention in DC just a couple of weeks ago. I feel as if her children are stronger and braver than me. I just lost my husband 2 1/2 years ago, this is just too much . I guess like every other family member that has contracted CJD , what is this , where did it come from and how do we do we go about doing something ? My son -in-law , has been so active in his research , but so little is known. I feel so helpless .
By Arturo de la Cerda on July 22, 2014 - 9:42pm
Sorry to read of your sister in-law's diagnosis. This monstrous disease is truly mind blowing for us. My dad passed from sCJD 12 years ago. He courageously fought this monster for 4.5 months, he passed one month after his 48th birthday. If you would like to keep in touch with a family on a one to one basis, please feel free to email Lori at the address above. She will be more than willing to relinquish my contact information. Take care, God bless...
By Denise on July 22, 2014 - 2:41pm
My 59 year old sister in law, a nurse, was diagnosed with CJD, probably sporadic, one week ago today. She was admitted to a local hospital on June 18 and discharged two days later with a diagnosis of a mild stroke. She had been exhibiting obvious signs of speech impairment and confusion for several days earlier, but tried to keep it hidden. Because she was over weight, had high blood pressure and was diabetic, no one initially questioned the diagnosis. Looking back she probably had some of the psychological symptoms much earlier. Being single with no children we took her into our home until we could get her into a rehab facility. Thanks to managed healthcare, it took us 10 days to get her admitted to an acute Rehab facility, while we continued to observe rapid decline and asked for another MRI, saying something else was happening. Dystopia began to set in and global aphasia worsened. She became incontinent and began having difficulty keeping down her food. The rehab personnel were baffled and ordered medical tests looking for infection noting they were also experiencing the declines we were reporting and would not be able to keep her in rehab if she wasn't meeting her therapy goals. The neurologist ordered a CAT scan before he finally agreed to another MRI. We finally told him if he couldn't help, to do what he needed to do to get her into IU medical center, Methodist Hospital in Indianapolis. She was admitted on July 13th and they diagnosis her with CJD two days later. Her symptoms and progression were actually quite classic for this oft misdiagnosed disease. By Thursday of last week she could no longer swallow liquids. She is now in a nursing home with Hospice care and has days to a few weeks before she passes. We are trying to keep her comfortable. The 10 days in our home now seems like a gift, as intuitively we did the right things providing for her care and comfort, seeking hope and joy each day. Had we not forced the issue for an answer with the treating neurologist, we probably never would have known what caused her rapid decline and would have forever questioned what more we could have done. I am thankful for all the information on the internet and my heart goes out to everyone who has been touched by this cruel prion disease. IU has asked for a brain tissue sample donation which the family has agreed to provide upon her passing in hopes what they learn will help others. Thank you for allowing me to share our experience.
By Kevin on July 21, 2014 - 7:48am
Hey guys - can someone please tell me, is it possible to get sCJD (Sporadic form of CJD) when you are in your early 20's? I am not talking about vCJD (variant CJD), I know you can get that in your early 20's, but I'm talking about the SPROADIC form, that usually occurs in old people. Is it possible for someone who is like 21, 22, 23 or 24 years old to get that?
By Deanne on July 21, 2014 - 2:17am
Hi everyone. So sorry to hear about your losses. I lost my mom last night to sporadic CJD. It has been a long 3 months. She was admitted to the hospital in April right after Easter with confusion and within a week she couldn't remember our names and barely recognized us. Then she had hallucinations and slowly forgot how to talk and do daily activities. Within 3 weeks she was bed ridden and had to be medicated at all times. Within a month she had a feeding tube. She couldn't swallow or talk or communicate for the last month. We just visited and talked to her. No one should die like this. My heart goes out to everyone. I pray they find a cure for this horrible disease. My mom was only 66 years old.
By Arturo de la Cerda on July 20, 2014 - 7:00pm
I am so sorry to read of your mom's diagnosis. This disease ravagous our loved one's in such heart wrenching ways It is truly unfathomable until the end. You and your mom are now apart of a family that will walk with you down this dark road. My dad passed from sCJD 12 years ago. He courageously fought this disease for 4.5 months, passing one month after his 48th birthday. If you would like to keep in contact with a family on a one to one basis, please feel free to email Lori. She will be more than willing to relinquish my contact info.Take care, God bless...
By Aziza Willey on July 19, 2014 - 11:18pm
Hi everyone. My mom is 60 yrs old and has recently been "diagnosed" with this disease. I saw my aunt and uncle pass away from something like thing back in 1988 and 1990 and just hope it wasn't this. I don't understand. I took my mom a present for Mothers Day and she was walking and talking. She repeated a story to me that day and dismissed it as her being stressed out. Well 2 weeks later, she could only walk with a walker and started having psychotic episodes. Here we are 2 months later. My mom is in a hospital, can't walk or talk. Doctors are recommending taking her IV out since nothing will cure this disease. This experience is unreal and too quick to process. It's sad. After reading stories on here, I know I'm not alone, for what it's worth thank you. Please keep our family in your prayers. I feel like the worst is yet to come. It is udder sadness.
By nora on July 18, 2014 - 5:51pm
Great to see Lori Jo Marcus Nusbaum from the CJD foundation raising awareness on CJD Awareness Facebook Group, the more CJD groups support each other the more awareness of this disease we can raise around the world. Thank you Lori for supporting CJD Awareness Facebook.
By Michael on July 17, 2014 - 2:24pm
I have lost my mom, brother and a 1st cousin to Genetic CJD. I have done a lot of family research and history. For 3 generations I suspect about 8 or 9 cases.
If you want to talk about his, give the office a call and ask for Mike Fitzgerald's contact information.
Every time that I see a case of Genetic CJD posted, I wonder if they are somehow related to me. There are numerous great uncle's and aunts that I have no idea about their extended families. I do know that my great grandmother(my maternal grandpa's mom) "went insane". I also know that 2 of my grandpa's siblings most likely had CJD and died from this disease. There are 3 of my grandpa's siblings that I know nothing about related to the last 2 generations.
Michael St. Louis
By Brent on July 17, 2014 - 10:33am
Good news guys! My 57 year old dad does NOT have CJD! He just had his MRI read by some of the best prion (CJD) specialists in the country, they said its absolutely, positively not CJD. Now we're thinking it something autoimmune... but hey at least its reversible then. Wish us good luck on finding the problems of his mental decline and involuntary movements