- About Us
- About CJD
- Research Grant Awards
- Frequently Asked Questions (FAQ)
- GINA Act
- Family Support
- CJD Foundation Family Research Grants
- Educational DVD
- News Articles
- Blood Donor Study
- End of Life Issues
- CJD Foundation Family Conference
- Letter From The American Red Cross
- Blood and Organ Donation
- Memory Quilt
The Creutzfeldt-Jakob Disease Foundation, Inc. is a non-profit patient/family support organization.
This Guestbook is solely for the use of families and friends affected by CJD to post their thoughts and personal stories. We reserve the right to remove postings that can be interpreted as medical advice, advertisements, disrespectful, solicitations, requests for donations for fundraising events, or offers of financial aid. Management of this guestbook is at the sole discretion of the CJD Foundation. By posting an entry you are agreeing to these terms. When signing the guestbook email addresses are hidden and only available to the website administrator.
Please do not post your email address in your message.
Unfortunately, over the years, many of our families have received emails claiming undocumented and dangerous claims about “cures” and medication and/or vitamins to be taken. Our most important goal in hosting this Guestbook is to provide a safe space for you, our families. If you want to be contacted by others send your name and email address to email@example.com. Add to your post “please contact Lori for my email address” and we will provide it promptly. While this additional step may seem cumbersome, it is important for us to take whatever measures possible to maintain this safe environment. Rather than remove the Guestbook completely we are adding this layer and will remove posted email addresses but not your messages. Also as an additional step to prevent spam from being posted, we have added a "Captcha" module. Please type in the letters and numbers when prompted.
Thank you for your help and cooperation.
If you need help posting a message, email firstname.lastname@example.org
By Arturo de la Cerda on August 30, 2015 - 1:53pm
I am sorry I'm sorry to read of your mom's diagnosis. This monstrous disease can ravage our loved one's with such speed it is hard to believe and or except what is happening. I was 14 when my dad was diagnosed with CJD My dad passed from Sporadic CJD 13 years ago. He courageously fought this disease for 4.5 months, before passing one month after his 56th birthday. We saw symptoms at least a decade, earlier looking back.
If you have a FaceBook account. The "FB" badge, directly below this page, will take you to the CJD Foundation's FaceBook page. They are also on Linkedin and Twitter. In FaceBook, there is also a few of CJD and Prion disease support groups/message boards. Such as "CJD Family", "The (International) CJD Support Network" and " Creutzfeldt-Jakob Disease Awareness". If you would like to keep in touch with a family on a one-to-one basis. Feel free to email Lori (above this page), she will be more than willing to relinquish my contact information. Take care, God bless... Stay Strong =)
By tina carlisle on August 29, 2015 - 11:35pm
My heart is breaking for you. I am old enough to be your mother, I open my heart to you! If you would like to talk personally, call the CJD Foundation and ask for my phone number. I was 55 when I lost my mother to this awful disease, and I am blessed to still have my father. I have a 36 year older daughter. You do not need to go through this alone, the people here at the CJDFoundation.org are compassionate and caring individuals. There is also a face book site called CJD Family, this group is very diverse, all ranges of ages and people who have already been through this disease or are going through it! DO you have siblings or are you an only child? Do you have aunts and uncles, grandparents, that can help you? Please take a moment and call Lori, I will talk to you any time night or day. Sending you strength and courage and letting you know someone cares deeply about what you are going through.
By Kayleigh Doten on August 29, 2015 - 8:31pm
Hi. I'm 18 years old and my mom has CJD. She is 52 and was diagnosed a few weeks ago. I have grown up without a father so far and I was wondering if there are resources for family members of CJD patients who will be left without parents. Thanks so much for your help.
By tina carlisle on August 29, 2015 - 5:31pm
It has been some time since I have been on this site. My mother passed 4 years ago August 6, 2011. At the time our family was going through CJD Hell, I did not know this wonderful foundation was available. It was a complete fluke on how I found it! My father had read an article in his local newspaper about a woman with a rare degenerative brain disease, he cut it out and mailed it to me. It was not CJD, but it gave a number to call, I explained why I was interested in their article, and the woman from that foundation gave me the number for the CJD Foundation. That was 1 1/2 years after my mother passed. I immediately called and spoke to Lori, it was as if finally, I was no longer alone in that deep dark well I had fallen into through the death of my mother. I wrote my story here almost 3 years ago and Arturo responded immediately inviting me to join CJD Family on Face Book. Arturo is a remarkable young man that works endlessly inviting and welcoming all new families suffering this monster. Karen is a woman that through her own pain and heartache had the courage to start CJD Family. Though I have had the opportunity to meet Lori I have not met Arturo
or Karen personally. My heart goes out to each one of you that have suffered because of this monster. At the time we were going through this we had no one to turn to, no one to ask or answer questions. I will never forget the first time I heard those three letters and looked them up on the internet! I prayed with my whole being that my mother would not have tested positive to this merciless disease. That however was exactly what she had, 2 months to the date we got the report, my mother passed. I do not know of another illness that offers no hope, no experimental treatment, no medication to slow it down, sitting in that conference room that day surrounded by the 8 medical professionals, all they could do was look at us with pity in their eyes, and I'm sure each and every one of them wanted out of that room faster than we did. Looking back everything happened on high speed! Not knowing from day to day, let alone hour by hour, where the monster would hit next, never gave us the chance to catch our breath and just enjoy one day without noticeable decline. Further and farther into the dark well I fell. I prayed for God to set her free of the monster inside her brain destroying so completely all that was left was her shell. At last when she did pass it was one of the most beautiful tortured moments of my life. It is a moment I will treasure forever. I will not forget the peace that came over her face and she literally transformed from a ravaged suffered person to a serene peacefulness I cannot give justice to in words.
I know how you are suffering, needing and wanting questions that cannot be answered. Making decisions than 2nd guessing yourself if you made the right one! Don't do this to yourself. Follow your heart at all times. Do not be afraid get in bed and lie close to your loved one, take pictures, record voices, make every second count. When the going gets really rough, allow yourself the time to breathe, get away for a few hours, let others in to help you, each person that loves your one in a million has their own special relationship, let them say their goodbyes, if your CJD victim can still talk, and comprehend, let them say what they need to say, and you listen, don't just hear, listen! Play their favorite music for so many music seems to calm and help them remember something. My mother couldn't remember us . but she could sing the words to "you are my sunshine" The most important words of wisdom I can pass to each of you that are going through this CJD Hell, know that you are not alone. They're are many of us that have been through it, we can offer you support, compassion, an outlet to vent your anger and frustration. Either here or on Face book, together we stand strong. If anyone would like to talk personally I open my heart to you. Just contact Lori, she will give you my number. I am no longer in that dark well, though I still have days of deep sorrow, I have days of great joy. I miss my mother more today than yesterday, but I look in the mirror and know that along with the rest of family, we did everything we could for her, this last chapter of your loved one life is not about you, it is about them and all they need is your unconditional undying love. If they can no longer communicate, then just hold their hand, keep contact by touch!! God Bless each of you, I send you strength and courage to get through one day at a time!
By Arturo on August 28, 2015 - 7:21pm
I am sorry I'm sorry to read of your mom's diagnosis. This monstrous disease can ravage our loved one's with such speed it is hard to believe and or except what is happening. My dad passed from Sporadic CJD 13 years ago. He courageously fought this disease for 4.5 months, before passing one month after his 56th birthday. We saw symptoms at least a decade, earlier looking back.
If you, or anyone in your friends family have a FaceBook account. The "FB" badge, directly below this page, will take you to the CJD Foundation's FaceBook page. They are also on Linkedin and Twitter. In FaceBook, there is also a few of CJD and Prion disease support groups/message boards. Such as "CJD Family", "The (International) CJD Support Network" and " Creutzfeldt-Jakob Disease Awareness". If you would like to keep in touch with a family on a one-to-one basis. Feel free to email Lori (above this page), she will be more than willing to relinquish my contact information. Take care, God bless...
By Anna on August 27, 2015 - 8:34pm
My mother has just been diagnosed. 5-6 weeks ago she was still able to care for/cook/drive herself. Now she is already bedridden. Looking back, we have pinpointed approximately May, when symptoms actually started. She is coming to my house from hospital tomorrow with hospice helping. At this rate I don't expect her to make it another month.
By Lori, CJD Foundation on August 19, 2015 - 11:59am
The CJD Foundation is holding several runs/walks around the country on OCTOBER 31, 2015. Our signature event will be held in New Jersey, but satellite events are being held in many different places - Orange County area is one of those places. Please go to the website www.strides4CJD.com to learn more. We would love for you to be involved.
Please call us at 1-800-659-1991 if you want more information or have any questions.
By Arturo on August 18, 2015 - 2:32pm
I'm sorry to read of your dad's passing. This monstrous disease ravages our loved one's with such speed it is hard to believe and or except what is happening. My dad passed from Sporadic CJD 13 years ago. He courageously fought this disease for 4.5 months, before passing one month after his 56th birthday. We saw symptoms at least a decade, earlier looking back.
If you, or anyone in your friends family have a FaceBook account. The "FB" badge, directly below this page, will take you to the CJD Foundation's FaceBook page. They are also on Linkedin and Twitter. In FaceBook, there is also a few of CJD and Prion disease support groups/message boards. Such as "CJD Family", "The (International) CJD Support Network" and " Creutzfeldt-Jakob Disease Awareness". If you would like to keep in touch with a family on a one-to-one basis. Feel free to email Lori (above this page), she will be more than willing to relinquish my contact information. A couple years back I did a fundraiser at my local Toppers Pizza Parlor. We rised $450 for the Foundation and they mailed the check to the Foundation themselves. I encourage you to get in touch with a local businesses and sew if they would be willing to due fundraisers, I am a college student, and will be attending UCSB in fall of 2016 I hope to create a FootWalk for CJD to benefit the Foundation. I will create a FaceBook page for this event, and will invite all of my SoCal CJD friends. Take care, God bless...
By Janette Cotero on August 17, 2015 - 4:53pm
Hello, My father passed away 07/17/2014 15 days after his 64th birthday. after him being diagnosed it seem it progress rapidly. My family and I had never heard of his disease prior to my dad. we were lost and didn't know where to go and what to do. I would like to know of any fundraisers or any events happening in the California area San Diego area to bring awareness.
By Leslie McNary on August 17, 2015 - 12:45pm
I watched a video of a documentary that was being shown in Texas,
lengthy but worth it, however has anyone else seen it and feel that
they now think sporadic CJD run in families?
By nora on August 13, 2015 - 3:06am
I am sorry to read that your daughter has passed away from this disease, there is a facebook group raising awareness of CJD called CJD awareness which has 1,988 members, you might find comfort and support if you join.
By Arturo on August 11, 2015 - 1:13pm
I am sorry to read that she was your daughter. She fought bravrly. My dad's duration was 4.5 months. You and your family are in my thoughts and prayers. Take care, God bless...
By Rex Forrest on August 9, 2015 - 5:28pm
Leah was my daughter watched her last breathe after 10 mos of suffering
By Manmeet on August 6, 2015 - 8:46pm
Today I lost my mother to this horrifying disease CJD [08/06/2015].
She was diagnosed with possible sCJD in December 2014. She showed the first symptom in mid November 2014 complaining blurred vision. Soon in mid December the next symptom was tremulousness/weakness on her left hand. We got her EEG and MRI scan done and the reports showed abnormalities and suspected CJD. Within a few days she lost her vision, lost co-ordination of her left hand and balance. She could barely walk without support. She was hospitalized for further investigations but her condition deteriorated further. She could barely speak and her speech became slurred. She was discharged from the hospital on January 4th 2015. Soon after she was discharged from the hospital she became completely bed ridden. From January 8th 2015 she stopped responding completely and since then she was in akinetic mute state.
She breathed her last this morning and passed away due to respiratory failure.
It was really hard to see her battle with this horrifying disease for 8 long months.
I believe now she is in good hands and God will take good care of her!
By Arturo on August 6, 2015 - 5:54pm
I'm sorry to read of your friend's passing. This monstrous disease ravages our loved one's with such speed it is hard to believe and or except what is happening. My dad passed from Sporadic CJD 13 years ago. He courageously fought this disease for 4.5 months, before passing one month after his 56th birthday. We saw symptoms at least a decade, earlier looking back.
If you, or anyone in your friends family have a FaceBook account. The "FB" badge, directly below this page, will take you to the CJD Foundation's FaceBook page. They are also on Linkedin and Twitter. In FaceBook, their is also a few of CJD and Prion disease support groups/message boards. Such as "CJD Family", "The (International) CJD Support Network" and " Creutzfeldt-Jakob Disease Awareness". If you would like to keep in touch with a family on a one-to-one basis. Feel free to email Lori (above this page), she will be more than willing to relinquish my contact information. Take care, God bless...
By Rex M.Forrest on August 6, 2015 - 5:18pm
Rex M.Forrest -Leah Ann Adams/Morgan went home to heavenly Father 8-2-15 @8:45 am with sons and daughter and family by her side 10 months of pain has gone.Peacefully we all granted her God speed as we will see her on the other side some day God willing.Hopefully with results from autopsy we will help someone else not to go thur what we have or anyone else with cjd Thank you all for your help in helping my family try to understand what we had no idea of what Leah was going thur.Still makes me mad that they DOCTORS HAVENT found out more on this disease.Ther are three more people Ive heard this week that have died in this area Nothern In.What is being DONE to stop this?
By Denise F on August 5, 2015 - 9:39am
Dear Jessica Cassium, Thank you for sharing your story with me. My heart aches for you and your family and the rest of us who have either walked this path or are presently still walking it. Blessings to you and your family. I have been on this path with my husband in a significant way since early April. I agree that each day is a gift but the journey is extremely difficult. It's all too long and too short all at the same time. Thank you again for reaching out to me. ~Denise
By Jessica Cassium on August 4, 2015 - 1:30pm
Dear Denise F., My Heart still aches and is in tune with yours. My husband was only 50. You are correct as in each case is significantly different. We are from the North East Pennsylvania region. Our time line was quick but long ... as you know what a day can be. We (Our 3 children 25-D,21-D and 15-S) cared for my husband on our own. It was the first week of January that we started seeing our Family doctor for symptoms of short term memory loss and balance issues. January to February was increased loss of memory, balance, coordination, fine motor skills, and appetite. Also mood swings and periods of total loss of recognition of family members, time jumping, paranoia and hallucinations (some very violent). Family Physician, ER Doctors, Pain Mgmt. Doctors, Neurosurgeon and Neurologist being seen for different symptoms presenting were unable to diagnosis. On February 10th our family physician finally hospitalized him (to get the testing he needed quicker) under "altered mental state" following a violent hallucination. After multiple tests including two spinal taps and finally a better MRI (January an Open Air was apparently not strong enough) the Physician there along with a top Neurologist narrowed things down to 4 rare diseases and on February 13th I was told that they were leading with CJD. With no hereditary or exposed causes he was grouped as "Rapid-Aggressive, Random-Sporadic One in a Million"with 6 months at most. On February 14th I had to share this horrible news with my children and we all treated each day as a blessed gift. We looked at each day as a new day. With the rapid advancement we had only time to manage his care and appreciate the small gifts we got. (I was blessed to marry him 4 times in that month (in his mind). Our children got to experience their father at different young ages of innocence as he would jump back in time mentally) With the good came the bad, actually horrible too but we reflect on the good as much as we can. My pushing for a second opinion and complete diagnosis got my husbands case sent off to Dr. Bizzi and the research foundation in Italy. However, it wasn't until March 4th that we got his final diagnosis. Little did we know that March 3rd he took his last steps. March 6th bed ridden and vision questionable. March 7th was the last solid meal. March 8th speech was very difficult very limited movement of arms/legs and Hospice assessed to try and help. March 9th his last words and very little food or liquid. March 10th - awareness but no signs of voluntary movement and hard to swallow. March 11th mostly at rest but when awake he was aware but trapped. On the evening of March 12th he found peace in the comfort and love of our children and I. As you see we only had time to care and not think or really react to or absorb what was happening. It was painfully short and long all at the same time. My children and I are still and I believe for a very long time will be processing and trying to understand this horrible disease and everything we have been through and continue to experience. We are only now realizing the depth of what happened and how it continues to effect each of us. We have as a family decided to donate to CJD research to help bring more awareness and hopefully some advancement leading to at minimum a medicine - a chance. "No treatment - No cure" ... there are no words for the feelings that come from hearing those words.
By Jessica Cassium on August 4, 2015 - 11:11am
My Husband recently passed with CJD. A short summary of his case: We only first noticed a health issue (memory glitches we called them) in January, Severe neck pain w/extreme headaches, balance and coordination issues, halucinations, moods, decrease of appetite and depleating memory presenting similar to dimentia all set in or advanced into February. Hospitalized for 2 weeks discharged with a tentative diagnosis of CJD on February 13th . . . Tests sent to Dr. Bizzi of Milano, Italy reached us March 4th confirming CJD, He was aware but bedridden by March 7th and succumbed to CJD March 12th. We requested Donations be made to a local foundation who collected on my husbands behalf to be donated to a CJD foundation of our choosing. We would like to donate to Dr. Bizzi and his research facility. As fate would have it I will be in Italy by the end of this week and Milano on Saturday August 8th. I have tried to reach Dr. Bizzi via email but have been unsuccessful. Could anyone assist me in setting something up with him or the foundation there as I would like to make the donation personally if possible. Respectfully, Mrs. Jessica Cassium
By nicki johnston on July 28, 2015 - 8:35am
ERICA , we are from Central Mo . Little North of Columbia . Our Diagnosis came to us near 3 weeks ago and are home with her till the end . Never expected the progression to go so fast but it is ! Its sad . She was as healthy as ever until she became what she thought sick with a cold then the persistant cough came and never went. still has it. Her short term memory then went . Since her Diagnosis things seem to be going fast. Just the past few days she had to be catheterized , needing help to be fed . And way just know your not alone in this. There are more of us then you can imagine !! Hugs to you as you go thru this too .
By Denise F on July 26, 2015 - 8:49pm
Thank you for the suggested links. I have found one group on FB and will look into the others. I will also be checking back on here. Blessings ~ Denise
By Arturo on July 24, 2015 - 8:33pm
I am sorry to read of your husbands's diagnosis. This monstrous disease ravages our loved one's with such speed it is hard to believe and or except what is happening. My dad passed from Sporadic CJD 13 years ago. He courageously fought this disease for 4.5 months, before passing one month after his 56th birthday. We saw symptoms at least a decade, earlier looking back.
If you or anyone in your f family have a FaceBook account. The "FB" badge, directly below this page, will take you to the CJD Foundation's FaceBook page. They are also on Linkedin and Twitter. In FaceBook, their is also a few of CJD and Prion disease support groups/message boards. Such as "CJD Family", "The (International) CJD Support Network" and " Creutzfeldt-Jakob Disease Awareness". If you would like to keep in touch with a family on a one-to-one basis. Feel free to email Lori (above this page), she will be more than willing to relinquish my contact information. Take care, God bless...
By Denise F on July 24, 2015 - 12:50pm
Currently walking through this hell with my husband who has been diagnosed with CJD at the age of 52...
I know that each person's progression is unique but I would welcome information as to possible timeline of events and how families have managed to survive this monster. Thank you
By erica on July 21, 2015 - 5:19pm
Anyone in the southwest Missouri area currently providing care for someone with CJD or who has lost someone to CJD? Would like to talk with someone local vs through chat rooms. Thank you!
By Arturo on July 19, 2015 - 8:48pm
I'm sorry to read of your cousins slow denaturation My dad passed 13 years ago. He courageously battled Sporadic CJD for 4.5 months, passing one month after his 56th birthday. Time and research has shown the medical community that Sporadic and Familial (Genetic) forms of CJD that their are several subtypes within these forms. My friends wife's batlle of CJD was a two year duration. Unlike your cousin she was bedridden for the latter stages of the disease. Because of the longer duration, they thought she may have the familial form of CJD She was tested, and her test results came back negative.
As far as the possibility of a misdiagnosis. This disease in the medical community as "The Great Mimicker". CJD mimics many other neurodegenerative diseases. Because of the mimicry, many other neurodegenerative are ruled out before a probably diagnosis of CJD are given. I hope you and your cousin receive the diagnosis assistants needed. Take care, God bless...
By Francz on July 19, 2015 - 11:20am
My very close cousin age 63 Brooklyn NY, was diognosed with CJD over 2 years ago, she is since then on a feeding tube , not walking or responding to anything, but her health overall is very good, is there any advise where we can do anything else, it has been 2 years, and of all the cjd stories I don't see anyone being so long without changes for the worse or the good just staying the same, it maybe misdiagnosed or so , please advise . Thanks.
By Arturo on July 17, 2015 - 9:39pm
I'm sorry to read of your dad's passing. This monstrous disease has odd ways of coming out before our loved one's are given with a probability of the disease. My dad passed away 13 years ago. My family and I were given the probability of Sporadic CJD in June of 2002, but we saw symptoms at least 10 years prior. My dad battled this disease for 4.5 months. Passing one mone month after his 56th birthday.
If you or anyone in your family have Facebook, Twitter, or Linkdin accounts. The CJD Foundation has a presence in these three social networking websites. On FaceBook their are CJD and other Prion related support groups such as "CJD Family". "CJD Family" is an open group so you can just search for it and we would be glad to add you. Take care, God bless..
By Svea LeComte on July 15, 2015 - 8:41pm
Today my Dad passed away from a short furious battle with CJD.
My Dad lived in Austria/Europe, I live in Texas.
In March my parents came to visit, I haven't seen my Dad in several months and he seemed too skinny, but since he's always lived a very healthy active life I wasn't too concerned. Since 2013 he was suffering from restless leg syndrom and took meds and was able to manage it somewhat good. While visiting it got quite severe, I took my Dad to my chiropractor for acupuncture and that helped. Although my chiropractor noticed that he's all cramped up and unable to lay his legs straight on the table while laying on his back. He blamed a vitamin and or electrolyte deficiency. My Dad just wasn't feeling too good and decided to leave May 11, a week sooner then planned.
Once back in Austria he saw his neurologist for his RLS and was put on Sifrol. 2 days after taking the new meds he became very dizzy..a major side effect from Sifol. He was told to continue to take it for 3-4 weeks. His RLS was improving, he slept much better, yet the dizziness got worse. One week later my Mom noticed his left arm being "strange". Family doctor made notes and wanted to see him in another week. During this week, my Dad started having difficulties walking, his balance got worse and the day he went to the doctor again he was unable to tie his shoelaces! The doctor sent him to the hospital. All the blood test showed an extremely healthy man, while his motor skills worsted daily. There was absolutely no sign of behavior change or dementia, my poor Dad was just frustrated that nobody could figure out what was wrong. Day 3 in the hospital he had to use a walker and became nervous and wanted to go home. Doctors took a spinal tap and more blood and my Dad was allowed to leave the hospital until the results are back, which may take several weeks. We took my Dad home on Tuesday June 23, had 3 wonderful days with him. His mind became a little slower and walking became harder each day, but his personality hasn't changed a bit! Friday June 26 my Dad took a major turn to the worse, he was unable to pull himself up from a chair, unable to use the restroom and almost unable to communicate.
The next day, Saturday, he was shaking uncontrollable and we had no choice but to bring him back to the hospital. The following days he didn't speak much, but whenever he said anything he was bright and clear. July 1 he stopped eating. July 2 he did not recognize me anymore, which made my good bye a little easier, since I had to come back to Texas the next day. With the advise of all doctors we decided not to give my Dad a feeding tube, IV's with Electrolytes and pain meds only. His cramping and shaking was almost unbearable to watch. he lost more weight but his face looked healthy until last weekend. That's when he became a slight fever. Last night his fever got to approx 102, the nurses changed his bed this morning and cleaned up my Dad and afterwards he took 3 deep breaths and closed his eyes forever at the age of 77.
It was exactly one month from when he went to the hospital the first time.
It was horrific watching my Dad go through all this and more than frustrating that nobody has answers.
The hospital my Dad was in gave excellent care, could not have been any better to my Dad, but they only had one case of CJD in the past.
I'm writing all this, hoping my information will help another family and also to let everyone know that CJD does not nessesary start with Dementia.
If anyone has any questions please contact me. My goal is to raise awareness and to help!
By llihacr on July 13, 2015 - 2:18pm
Is there a possibility to test donated blood anno July 13, 2015 ?
By Guest on July 11, 2015 - 8:06pm
For Guest who asked about removing feeding. My mom passed earlier this year from CJD. She had very clear end of life instructions and at the point that it became clear that recovery was not going to be possible my Dad and I decided to remove her feeding tube. She had not been responsive for at least a week at that point (hers was a fast decline, 52 days from first symptom to gone). We knew that was what she wanted even if she wasn't able to communicate it to us at that point. It was still incredibly hard. I wish you the best.... whatever decision you make, you are doing it with love.