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The Creutzfeldt-Jakob Disease Foundation, Inc. is a non-profit patient/family support organization.
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By Arturo on February 28, 2015 - 6:52pm
To all newcomers:
Welcome! We are all here to comfort one-another, no matter what distance we are on the Creutzfeldt-Jakob Disease road. Let me share my experience on this road.
The monstrous disease we call CJD, takes our loved ones downhill in such a fast pace. It is completely unbelievable. My dad passed from sCJD 13 years ago at 48. I had just turned 14 before diagnosis. When the VA/UCLA hospital released him with a 60% of diagnosis. My dad, had told me himself that he was dying. I couldn't believe/ I didn't want to believe what I heard him say. Later on that week my mom told me and my sister that dad was fatally sick (I don't remember it as clearly as it was as when my dad told me himself). About 7 years prior to my dad's diagnosis. My mom had I nearly fatal brain aneurysm and hemorrhage. I have Quadriplegic Cerebral Palsy. This situation was completely was unattainable to me. My dad courageously battled for sCJD for 4.5 months, while heartbreakingly helped mom care for me. I tried to be strong and not let my heartache show, so I convinced myself my dad was acting. for those in my family that knew my dad was gravely sick by telling me "everything's going to be ok" I acknowledge and agreed just so I did not let my true feelings being been shown. Within those 4.5 months my dad was sick I went back-and-forth with my parents to the LA VA hospital. during my dad's final week, I remember tearfully telling my mom "I am going for your support, I cannot handle seeing dad like this". My dad on Friday October 18, 2002 in a convalescent hospital, but on that day I felt at peace and at cam compared to the past months. My mom got the call from the hospital around 10 p.m. My aunt took my sister and my mom down to claim my dad's body. The next morning I was ready and willing to see my dad, only to see my mom coming towards my bedroom. As soon as she reached my doorway, she kneeled down and said my dad passed last night . Right then I broke down in tears as reality sat in. I was extremely distraught that entire morning, as relatives came over. As me and my cousin were outside in my freind yard, I over heard my aunt ask my cousin why he was smoking. He replied "I always smoke when I'm stressed". soon after my aunt was done talking to my cousin I went to my cousin and asked him for a cigarette to help me get through the day. That coming Monday I tried going to school. About mid-morning that day, reality set in once again. I had to ask my mom to pick me up as I didn't think I could get through my classes and the rest of my day. From that night through several days after my dad's family I had a hard time sleeping at night and gentting through my days. Thank you for letting me share my experience down the Creutzfeldt-Jakob Disease road.
By Diana on February 26, 2015 - 10:19pm
Lisa & Ann-Marie:
I'm sorry to hear about the loss of your mom. As posted earlier, I lost my mom to this disease on 11/29/14. It is truly frustrating that people are getting diagnosed late. I wish that my mom was diagnosed a bit earlier so that i could've spend a little more time together. Especially in sporadic CJD, they are gone too fast!!
By Chris on February 23, 2015 - 11:55am
My condolences for the passing of your mother.
About the silver-nitrate eye treatment: Most states have laws requiring eye drops or ointments immediately or within two hours of birth (a list of state requirements can be found here: rbs2.com/SilvNitr.pdf). That said, because of the public outcry about this, by the late 1980s when my children were born, we were allowed to request that silver-nitrate not be an ingredient in this treatment. But when I was born in the 1950s, this was not an option.
By Arturo on February 19, 2015 - 2:09pm
Your advice is the most pertinent information a family could use going through this difficult road...
By Todd (USA) on February 19, 2015 - 1:21pm
For those of you just finding this site for the first time, I am truly sorry. My dad died of sporadic CJD May 26, 2013. He and I are both physicians, so it was incredibly difficult for us both since we knew the prognosis, course, and symptoms. It was about two months from onset of symptoms to his death. The best advise I can give is to spend as much time with your loved one as you can. That advice was given to me, and I'm glad that I did. Your loved one will never be as healthy as he/she is today, so enjoy the remaining time with him/her. Hopefully, one day there will be a cure, or at least a better way to control the symptoms.
Thank you CJD family for all your support.
By Anna-mare Fallows on February 18, 2015 - 8:33am
I am so sorry to hear about your mom. It is truly heart breaking losing your mother to CJD. Our moms died on the same day and I do believe that they are happy and healthy where they are now. I will keep you in my prayers. Please get my e-mail from Lori if you want to communicate.
By Lisa on February 17, 2015 - 12:18am
I also lost my mother on Feb 5 2015 to Cjd. I read all of the stories posted here looking for support from other people who lost their loved ones and most stories are the same as my mom. She was diagnosed 1/5/15 after 2.5 months of progressively deteriorating awaiting a diagnosis. My mother first showed symptoms in Late August with blurred vision and dizziness. In October, she began to have balance issues and lack of concentration. Thanksgiving week she was hospitalized till January with no diagnosis and being told we need to send her to palliative care. I transferred her to columbia university 1/2:2015 with her being diagnosed on 1/5/2015. At this time , she could no longer speak but still alert and able to answer questions with a head nod or finger twitch. That was completely heartbreaking to see my once strong mother , bed bound and helpless. We were told to transfer her to hospice where she passed exactly 1 month later. My mother fought hard eating and drinking till the day she fell into a coma where she passed 3 days later. My heart and prayers go out to all the families that are dealing with a loved one and cjd. Mom I love you and rest in peace.
By ddeepbblue on February 16, 2015 - 10:14pm
A dear friend, who I have known for 50 years, has just been diagnosed with CJD. At this moment, I am not sure what do with this piece of information floating in my head. She will turn 61YO next month. This is a total shock to the system, as this has come on so suddenly. My heart goes out to all of you that have had to go down this path before me.
By Arturo on February 13, 2015 - 3:11pm
I am sorry to read of your loss. This is truly relentless disease no matter once it consumes our loved ones. My dad passed from this monstrous disease 13 years ago. He courageously fought this disease for 4.5 months. Passing one month after his 48th birthday. If you would like to stay on a one-to-one basis. Please feel free to email Lori (the address above this page). She wil be more than willing to relinquish my contact information. Take care, God bless...
By Arturo on February 13, 2015 - 3:03pm
I am sorry for your loss. This is a truly ruthless disease. My dad passed 13 years ago after a 4.5 month battle. Passing one month after his 48th birthday. This is a great page to help those in all all stages of this process, please feel free to post back on this page. take care...
By No name on February 12, 2015 - 12:34pm
My dad died from this disease. My dad was in 6 months or neurology service. 2 months hospitalized in intensive care units. He died November 14, 2014. He was 45 years old. I do not know how the disease is transmitted. I do not know who produced this disease.My father was very healthy But the disease progressed very quickly :( May Allah bless you... (We live in Turkiye- Istanbul )
By Anna-mare Fallows on February 11, 2015 - 9:48am
My precious mommy Lilian Malan 69 went to heaven at 1:57 am Thursday 5 February 2015. She courageously fought CJD and lost. We miss her so very much.
By Arturo de la Cerda on February 10, 2015 - 3:46pm
Thank you for sharing your beautiful with us! Like your mom my dad rarely got sick. Their is one time in particular, he had a severe flu (one of the many predominate symptoms of this disease) He stayed home for about a week, when we had just moved for his new position as City Manager of Corcoran, CA. My dad from Sporadic CJD 13 years ago. He fought this monstrous disease courageously for 4.5 months. Passing one month after his 48th birthday. If you would like to talk on a one-to-one basis. Feel free to email Lori (at the address above). She will graciously give you my contact information. Take care, God bless..
By kimberly on February 6, 2015 - 7:33am
my beautiful mother of just 72 years of age..who worked out on a regular basis, won many spin cycle class ribbons,and who was rarely sick throughout her life died just 2 weeks ago ( without even her cause of death in writing yet) we've sent her to the CJD surveillance center ( out of state for the autopsy because nj prohibits these types of autopsies here) why I ask? why ? if my mom did indeed have CJD in which we still do not know..why then must the autopsies be done out if state ? well,I've got a clue..prions are prions and they can not be killed/destroyed clerk of. so then what how and where does the prion center who does this autopsy, after (_one would suppose very very strict disinfection of all contaminations along with the prion infected instruments etc all biohazard ( seriously so) well..where are the dumping this stuff ? it has to be on this planet somewhere. my usual guess is our oceans neatly sealed in a steel drum just like nuclear waste . after that being said..prions have been around forever, they can not be destroyed. I also believe perhaps someone like my mother who was diagnosed with multivocal motor neuropathy 30 years earlier and supposedly was "miracuosly cured" with "ivig and prednisone treatments for a few months.she was happy/relieved that all her symptoms disappeared however..shortly after " the cure" she developed diabetes type 2. she was a role model for diabetes a non smoker as well. she never missed her physicals, well care etc. there's yet another thing that I don't quite understand either..when she was born, "silver nitrate" was put into her eyes immediately ( silver nitrate contains mercury and is extremely toxic to the body). then she like so many others without any questions asked..took regular immunization injections ( which also have mercury in them) one more is the huge amount of "mercury fillings both in her teeth not to mention deeply packed into her dental roots for several root canals. what I am thinking is that there may be more causes of this CJD.perhaps, with all the toxic buildup of mercury in her body which can take up to 30+ years to cause symptoms...and maybe the silver nitrate drops that were given to all babies after delivery to prevent disease caused by chlymydia, gonnorhea, syphillis strain etc..perhaps not only are those drops toxic long term but more importantly..the drops do not immunize the std's permanently. being said, I have researched many with neurosyphilis ( symptoms are very similar) so are the actual degenerations of the " multifocal motor neuropathy with conduction" that she was NOT told by her neurologists could worsen and the " mercury toxicity" from various dental work and so called disease prevention. further more I believe once the degeneration/ death and decay of cells brain matter etc starts inside the body..prions are a natural way of ridding the diseased areas. I believe this happens in nature as well. so, we all must really be our own doctors here, our own nutritionists as well. we now live in a "poly-plastic-very-polluted-world". chemicals in our air,0ceans, fish ,all living beings can not escape it. we all must drink and eat and breath to survive on this planet.my heart also goes out to those who've been diagnosed and died from Alzheimer's, lewy body, Parkinson's, a.l.s and the zillions of other life threatening illnesses (ms too) I question these diseases and the fact that no one seems to actually really know their exact " pathanogens". how they are acquired. many have suffered and died from these horrific diseases that I believe were brought on by "man". I sincerely believe by breaking " the sacred universal laws if nature and health" with artificial "everything" including animals etc..all these fatal diseases were brought on by ourselves not knowing, not fully understanding the depths of breaking scared natural and health laws would do to all beings. the disease "CJD" in my opinion, is a symptom. "a symptom and a message for all of us"...
in closing, I want to tell my mom how much I love her, admire her and how grateful I am to HV HD such a wonderful intelligent nurturing loving woman such as herself in my life as my mom.
mom, I will always carry you in my heart continuing to find an answer hopefully a cure for you and the many others here.your life meant a lot to me and you deserve to know why you got so sick and suffered so.. I am happy now that you've crossed over where there is no suffering. peace absolute joy is with you now my beautiful mother. someday there will be an answer. I love you.
By Arturo on February 5, 2015 - 3:39pm
I will hope and pray your husband's test negitive for the biomarkers for CJD, Each case of CJD is different in both duration and symptoms. My dad passed thirteen years ago. He courageously battled this monster for 4.5 months (diagnosed in June) passing one month after 48 birthday, If you would like to talk on a one-to-one basis. 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 Arturo on February 5, 2015 - 3:36pm
I am sorry to read of your husband's passing. This is a horrible monster of a disease. Since my dad's death I have been advocate for awareness of CJD and other Prion disease. My dad passed thirteen years ago. He courageously battled this monster for 4.5 months (diagnosed in June) passing one month after 48 birthday, If you would like to talk on a one-to-one basis. 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 ann frankum on February 5, 2015 - 5:59am
do patients hav days where they can walk with walker and then the next cant walk. I mean like good days and bad days
By ann frankum on February 5, 2015 - 5:55am
my husband hasn't been diagnosed but I want some support as we are waiting for spinal tap results
By Dorothy Weller on February 3, 2015 - 5:38pm
My husband passed away January 8,2015. I just received the autopsy report today that confirmed CJD. His first slight symptoms started in Nov 2013. He worked until the end of September where he went from a cane to a walker to a wheelchair in the month of October. He was hospitalized Nov 20th and went to a care facility Dec 3rd. He went downhill very fast and was hospitalized again Jan 2nd. Moved him to hospice 6 days later where he passed. I was there holding him until the end. This is a horrible disease and we as surviving families need to get more money for research. Thank you.
By sara on January 24, 2015 - 9:22am
Thank you Michelle...we must keep it on mind. Sorry about your uncle.
By Michelle in Philadelphia on January 23, 2015 - 8:23pm
Last night I had a dream about my uncle who died from CJD a year and a half ago, and it re-awoke feelings that I had buried, but not buried too deeply. In the dream, we both knew he was gone, but he was giving me a chance to hug him like I used to hug him, something that I could not do when he was sick. CJD took him away so quickly; one day he could talk to me, the next day he couldn't. Then, he reached a stage where if I tried to hug him, he quickly turned away from me, like when you are trying to feed a child something he or she doesn't want to eat. I am certain that it was a reflex, and not a conscious movement. But it always has haunted me. And so I think this dream was a chance to address this. I think that my reason for writing this here is just to tell others, that if you are experiencing a similar behavior in your loved one with CJD, as hard as it may be, do not take the behavior personally. I found comfort in talking to him and playing him music from the radio and a tape player. My heart goes out to all of you.
By Sandra Shrout on January 22, 2015 - 9:53pm
Sandra and Delco Shrout
Lost our Son Jeffrey Garrett Shrout
August 11, 2014
By nora on January 20, 2015 - 8:16am
This youtube clip is dedicated to Ellie Steiger from Utah sadly she died from the same disease as Becky Lockhart 'CJD':
By Sara on January 19, 2015 - 10:24am
Sorry,i mean we will NOT know if it works or not on my cousin .
By Sara on January 19, 2015 - 3:40am
I am afraid we will know if it makes any result on my cousin since he gets worse pretty fast. I know you can get Astemizole in Mexico and Argentina for sure. Anyway ,as far as i know it could be a helping hand but not a treatment . However why not to try it if the sick person is still on time.... Someday a solution will be found for good and i hope this happens soon.
Please keep me posted about any news. thanks a million and good luck for all.
By Chris on January 18, 2015 - 2:03pm
Sorry to hear about your cousin.
Your mention of ASTEMIZOLE prompted me to search for info about it on Google. Very interesting! But it has been removed from the market in the USA. If your cousin manages to get into any European trials of this or other related treatments, please keep us posted about the results.
Lori has my email
By nora on January 18, 2015 - 5:28am
Very sad news that Becky Lockhart aged 46 former house speaker has passed away from CJD on 17th January 2015.
By Anna-mare Fallows on January 18, 2015 - 2:20am
Hi Eryca, may I ask how you found out you also have the mutation, did you do a blood test? Since my mother has tested positive for CJD I am trying to find out how to go about finding out if it is in our family...