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By Arturo on March 23, 2015 - 3:30pm
I'm sorry to read of your mom's death. that 1:1,000,000,000 statistic, is severely askew. Dr, Gershwind , a head medical physician at UCSF in Prion disease, said it himself. My dad passed 13 years ago from sCJD. He battled this monstrous disease for 4.5 months, passing one month after his 48 birthday. If you have a FaceBook account we have numerous CJD related discussion groups.(Such as "CJD Family"). Just clink on the "F" badge at the bottom of this page and it will direct you to the CJD Foundation's FaceBook page. Just search for "CJD Family, "Cure CJD", or " Creutzfeldt-Jakob Disease Awareness". You will see those aforementioned discussion groups. Or if you would like to keep in touch on a one-to-one basis, feel free email Lori (at the email address above this page) and she will be mor´than willing to relinquish my contact information. Take care, God bless...
By Lauren Stanilious on March 23, 2015 - 1:11pm
Hi, my name is Lauren, I lost my mom to this horrible disease January 22, 2015. She was my best friend, like my twin and am so lost without her. Trying to get through this process of grieving as I am new to this whole new world.
I am searching for answers as all the stories I read all over the web, etc., what has research found on why the proteins start folding and creating the symptoms. My mom was the poster woman for the healthiest 72 year old and never was hospitalized. I would love to understand where we are at in this realm of finding out what starts it and even though it's like Alzheimer's, there still is no test to determine what it actually is and there's no drugs, unlike in Alzheimer's to halt the progression.
What are the field researchers doing to help these people and I have to say with all the stories, this is not 1 in a million and more must be done. I'm completely devastated as to what my family and I had to witness in 8 weeks of my mom's devise.
By Manmeet on March 21, 2015 - 11:46pm
In my mother's case, she has not been talking & stopped responding since 8th Jan 2015. Since then we feed her liquid diet using feeding tube. The last she spoke to me was on 7th Jan night. On the 8th Jan morning she woke up and was completely mute, not responding at all.
Doctors have asked us to give her Ativan 1mg bedtime, and Ultracet (pain killers) twice a day. She has been in this mute state for almost 2 1/2 months now. She feels senses in her feet when we touch her.
We have been told by the doctors that she will remain in this state and that no medication can help her now.
By Amanda on March 21, 2015 - 10:01pm
Thank you Nora, I will join the group. Manmeet, my father-in-law only slipped into a coma like state 8 hours before he passed away. Up until that point, he was completely conscious and talked to us everyday. The day before he passed, he called my husband by name, the first time he had done that is over 3 months. As Arturo said, each person is different. I read all of the websites and monitored his progression through the disease. For the most part he went through all of the "stages" I read about. I am so sorry you and your family are going through this. My thoughts are with you.
By nora on March 19, 2015 - 7:27am
To Lee, Amanda, Manmeet, William and to those families who have been affected by this awful disease who would like to raise awareness of this disease please feel free to read and comment on the 'Creutzfeldt-Jakob-Disease (CJD) Awareness' facebook public group, the CJD Foundation also promotes awareness on this facebook group.
By Lee on March 18, 2015 - 4:13pm
I am currently sitting at my aunts house while she is giving her sister water through a large syringe. This is the second aunt I've had in the past two years get ill from this disease. My other aunt passed away a few months ago. Around that time is when this current one was diagnosed. She has been the worst case in our family so far. She is experiencing such pain that we are hoping it soon ends. Grandfather had it as well and his doctor told them that if you get it chances are 50% of your children will get it. There was five of them soon to be just three. They think that no one else should have it since the rest are all in their 60s way passed the age.
By Arturo on March 14, 2015 - 7:04pm
I'm sorry to read about your mom's diagnosis. My dad passed from sCJD 13 years ago. Unfortunately each case and its symptoms has different effects on our loved one's My dad battled this monstrous disease for 4.5 months. Staying in conscience for the majority of that time span, not falling into a coma. I'm pretty sure others that may be able to tellyou how their loved on's slipped into coma, but like I said, unfortunately every case is different. I'm so sorry you have to go through this, Take care, God bless...
By Manmeet on March 14, 2015 - 9:55am
My mother is 64. Its been almost 4 months from the onset of the symptoms.
One question I had was do all CJD patients slip into coma? I have read on most of the websites that CJD patients eventually slip into coma.
By Amanda Wallace on March 12, 2015 - 12:42pm
Today my family and I received the news that my father-in-law did, in fact, pass from the sporadic version of CJD. My father-in-law was a wonderful man, who was devoted to his wife and family. He was 64 years old when he passed away. We started noticing changes in his mental state in mid-late 2013. He was seen in the ER in December of 2013, where he was referred to a neurologist. In February of 2014, the neurologist confirmed that he had suffered from a micro stroke, but should recover. In the summer of 2014, we noticed that his memory and recognition were deteriorating. In September of 2014, at a follow up neurology appointment, the neurologist diagnosed him with Frontotemporal Dementia. His condition continued to deteriorate. Finally, in December of 2014, he was diagnosed with CJD. The neurologist ordered an MRI and EEG. Both of those showed the changes indicating CJD. He lost his fight with this ugly illness on February 20, 2015. He was surrounded by his wife of almost 40 years and my husband. We were fortunate enough to have him at home throughout the entire process.
This illness is terrible and my hope is the research will help to diagnose earlier, treat and cope. I don't wish for anyone to have to experience this, and to those that have: my thoughts and prayers are with you. To the families of those that are being diagnosed, or recently diagnosed; know that you are not alone. Many of us have been where you are today. Find comfort in knowing that we will have answers some day.
For those that would like to contact me, feel free to let Lori know. She will have my information.
By Diana on March 9, 2015 - 6:36pm
I also lost my mother recently to sCJD and she had similar symptoms. How old is your mother? I heard stress can be one of the common factors thought to be a trigger for sCJD. I know that was true for my mom's case, her symptoms started after she was diagnosed with a chronic medical condtion.
I hope your mother won't suffer with this too long and wish you will have the strength to go through this difficult time. The one thing I regret is not spending every moment I could with my mom and I feel that her mouth got really dry and I wasn't giving her enough water using the syringe.
By Arturo de la Cerda on March 9, 2015 - 1:10pm
I'm sorry to read of your uncle's death. I do believe you may be able to donate blood, as you are not son or daughter. To confirm this. I would email the Foundation. Lori
s email address is above this page. Take care, God bless...
By William brewington on March 9, 2015 - 10:55am
My Uncle passed away from this Was wondering if I can donate blood ?
By Anna-mare Fallows on March 9, 2015 - 8:16am
Hi Amy, so very sorry to hear about your mother. I also lost my mom to CJD on the 5/2/2015. It is very difficult and making peace with life without a mom is heart breaking. Will keep you in my prayers. To Manmeet my mom also had vision problems and loss of balance as first symptoms. She was hospitalized 10 Oct 2015 and diagnosed with CJD in Dec. I pray that you will have strength for the difficult days and that you will be able to spend as much time with her as you can. All the best.
By Amy Harris on March 6, 2015 - 2:13pm
Dec. 1st 2014 was the first time I ever heard of this desiese.....2 days later my dear sweet mother of 75 is gone. .....
By Manmeet (India) on March 6, 2015 - 9:18am
My mother has been diagnosed with possible sCJD in December 2014. She showed the first symptom in mid November 2014 complaining blurred vision. We got her eyes tested thinking it could be due to change in her vision as she was having glasses. Her vision had weakened and even with the new pair of glasses she was 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 abnormilities 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. The hospital treated her with steroids suspecting hashimoto encephalopathy but even after 5 days of treatment her condition deteriorated further. She had hallucinations and soon lost her memory. She could barely speak and her speech became slurred. She was discharged from the hospital on January 4th 2015 and we were told by the doctors that she might have about 2 to 3 months left with her. 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 is in akinetic mute state. Now she does not recognize or respond to anyone. She gets myoclonous jerks and her feets and hands are in decorticate state. It is difficult to see her suffer like this daily. I hope she passes away peacefully.
By Arturo on February 28, 2015 - 7:52pm
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 - 11:19pm
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 - 12:55pm
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 - 3:09pm
Your advice is the most pertinent information a family could use going through this difficult road...
By Todd (USA) on February 19, 2015 - 2:21pm
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 - 9:33am
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 - 1:18am
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 - 11:14pm
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 - 4:11pm
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 - 4:03pm
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 - 1:34pm
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 - 10:48am
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 - 4:46pm
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..