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By Angela Aelvoet on December 10, 2014 - 9:10pm
My Dad was diagnosed with CJD this year. Watching him rapidly decline and need the assistance of others for just about everything in such a short span of time has been very difficult. He's still young and healthy other than the disease affecting his brain. A man who was once in control of everything, now having to completely rely on others. This site has helped me to learn more about the disease.
By Amanda on December 6, 2014 - 1:55pm
Chris: How were your wife's memory after some weeks into the illness? Were there times when her memory was better, and other times when it was worse?
I've noticed in my 28 year old son, he has days when his memory is worse, then days where his memory is better, but overall, he seems to be declining. He also mixes up words and thoughts, like he wants to say tomato but says apple. is this also common in CJD? Did your wife experience that?
By Chris on December 5, 2014 - 10:00pm
I'm sorry to hear about your son. I have a daughter who is 28, too. I've read about young people getting CJD of one form or another, although it is said to be uncommon at that age.
You ask about trusting doctors. Of course, doctors have to learn about rare diseases that run the gamut from the plague to CJD, so we have little choice but to trust them as far as we can. And you've probably read that CJD is often mistaken for dementia. That said, I'm sure that doctors are hesitant to suggest a person might have CJD unless they are very confident that there is ample justification to do so. The doctors know that CJD is fatal and horrible, and they are aware of the fact that you know that, too, so I suspect they are very careful about putting forth CJD as a possibility. I trusted our doctors, but because this was a matter of life and death, I did seek a second opinion by sending all my wife's records to Dr. Geschwind at UCSF; however, I did this only after our doctors here had suggested CJD, something they did gradually, and very gently, until I was willing to accept the possibility.
If you read the posts here (there are 145 pages of them) and notice other symptoms that are similar to those of your son, you might make a list for his doctor, and approach the doctor about ordering one of the tests that require spinal fluid (CSF), meaning the 14-3-3 and/or the RT-QuIC test. Maybe, they'd even order one if you simply asked for it--that depends upon the doctor. Nowadays, drawing spinal fluid is guided by ultrasound, so it's usually not as painful as it was in the past.
It must be frustrating to hear them suggest it is psychiatric. However, I've read about several other cases where it was initially thought to be psychiatric and it later turned out to be CJD. The problem is that those are the only ones I would have heard of. This is because the cases that were thought to be psychiatric and turned out to actually be psychiatric in the end (and not CJD), or the ones that turned out to be something else altogether, would probably not be reported on forums dedicated to CJD, such as this one.
There are some websites in the States and also in the UK that have detailed symptom lists, although in the UK, their main focus tends to be on the mad cow disease form (vCJD), which allegedly has not occurred in the US except in people who were exposed abroad. Even those numbered only four cases according to published reports.
By Chris on December 5, 2014 - 9:10pm
Jenny and Brian,
Thanks for reminding me, Jenny. Toward the end of the weeks of tedious waiting for the results to the 14-3-3, which seemed to take forever, I did request all my wife's medical records and test results up until that point. I sent those to Dr. Geschwind at UCSF, too. Unfortunately, they arrived the Friday everyone had left for a long weekend, but he examined them as soon as he returned, and got back to me right away, saying everything resembled "classic CJD."
All the results seemed to arrive that weekend, so by the time he got back to me, we'd already received the results of the arboviral panel and the 14-33, and we were anxiously awaiting the results of the RT-QuIC test.
By Derek on December 5, 2014 - 5:21pm
Basu Hombal - what do you mean " It took almost 9 months for the symptoms to appear"? She had no symptoms for 9 months, or just minor issues like memory loss?
By Basu on December 5, 2014 - 10:18am
My Mom has been identified with Sporadic CJD. It took almost 9 months for the symptoms to appear. MRI and EEG taken on NOV 20th 2014 fits the pattern of classic CJD. Today she is unable to walk and her cognitive skills almost gone. It is very tough for our family to see her suffer.
By Amanda on December 5, 2014 - 5:23am
Hi.. My 28 year old son has dementia. It started about 1 year ago and has been progressing. He doesn't have any movement issues, like he can touch his own nose and balance.. but he doesn't remember what happened yesterday. The doctors think it may be psychiatric. He's had several tests, like many MRIs, EEGs, blood tests... They all come back normal. The MRI has been reviewed even by some docs who are familiar with CJD, they say it's likely not cjd. What should we do? Does it sound like CJD?? We're really scared! Can you trust doctors even though they have experience with CJD?
By Charles Horn on December 4, 2014 - 11:40pm
My father was diagnosed with CJD the day before Thanksgiving. Our family is crushed. My father is still in good spirits. This disease is horrific.
By Jenny on December 4, 2014 - 5:45pm
Brian~ I'm sorry to hear about your wife possibly having CJD. I found the UCSF website on CJD to be most thorough and helpful. We (and I know many other people on this board) had Dr. Geschwind at UCSF read my dad's MRIs. He is considered "the" expert on diagnosing CJD through MRI, although as Chris said, it can't be confirmed until autopsy. You don't need to be in the Bay Area; contact his office and scans can be mailed.
Every case is different, and that's part of what makes diagnosing CJD so difficult. Some things may fit, and some won't. My dad never showed "positive" on the EEG tests (multiple times), nor did he have the 14-3-3 protein. But he did have cortical signal abnormalities (hypo or hyper intensities) in some of his MRIs.
Best of luck to you. Post again if you have more questions.
By Brian on December 4, 2014 - 5:14am
Thanks a lot for the detailed response. If you ever get the nerve to go through the hospital records, do post the descriptions of the MRI and EEG here. I'm really wondering how they would "term" it.
Thanks again for sharing your story..
By Chris on December 3, 2014 - 6:11pm
We saw 12 doctors at the main hospital where Laura stayed for 20 days before entering the hospice for the final 6 days. The hospital had won some awards and posters everywhere proclaimed it to be among the top 15 in the USA. Of those 12 doctors, 4 were neurologists, 4 were from infectious disease, and 4 were hospitalists. Only one had seen a case of CJD and that was decades earlier.
I had never seen a brain MRI before, and the neurologist sat me down for 45 minutes in front of a monitor and showed me all the images, explaining them as she did so. To my untrained eyes, it seemed like there were big holes everywhere, but the neurologist was quick to inform me that the holes caused by CJD would not be visible on the MRI. Her many comments were along the lines of “This area should not be cloudy” and “These two areas should look similar but they do not.”
She may have mentioned "hypointense" signals on the "ADC Map,” and she may have stated that the EEG show the periodic complexes (PC), but if so, those terms meant nothing to me, and I do not recall. I have all of Laura’s hospital records, although I have avoided perusing them, so far, but I could check and see if those characteristics were mentioned.
I asked the neurologist if any of these observations pointed to CJD in particular, and at that stage, because there were a couple of other neurological conditions being considered, she replied that, based upon the MRI alone, it was a tossup, but that the EEG patterns were more consistent with CJD. Apparently, the characteristic EEG patterns of the twitching and spasming that Laura was suffering are well documented, and the neurologist had been able to look them up. I suspect this is not the case with the MRI.
Later, after the second MRI and after the results of many tests came back and eliminated other conditions, was the word “strong” placed in front of “possibility.”
One problem was that we assumed Laura’s symptoms might have been caused by an insect bite. We were always avid medium- and long-distance hikers, to the extent that earlier in the year, we had founded a magazine (Camino Quarterly) devoted to the 500-mile Camino de Santiago hike across Spain, which we had recently completed. We live near the Great Smokey Mountains National Park, in which we hiked a lot, and that park boasts the greatest bio-diversity of any area of comparable size (800 square miles) on this planet, or so they claim.
On May 29, we did one of our most strenuous and remote hikes in that park, and it was teeming with insects. On the night of May 30th, Laura started twitching in the middle of the night, actually, it was borderline thrashing. She had had some minor twitches in her sleep off and on for some weeks, although I rarely was awakened by those events. However, there was no way to sleep through the twitching that began around 3am in the morning of May 31, less than 48 hours after our hike of the 29th. More importantly, there was something “insectile” about these new movements. They resembled an insect twitching after being bitten by a spider, or a spider twitching after being sprayed by a neurotoxin.
Because Laura was an epidemiologist with experience in infectious diseases, she was trying to advise the doctors about where to get the arborviral panel done for a good price during the first few days that we were in the hospital. And, naturally, we all hoped that it was simply an insect bite. Another hike in mid-May had put us in contact with a spray from a waterfall near an area where 30 years ago, a neurological disease had been spread by such exposure. There were many opportunities to hope that such was the case with Laura. Perhaps our strong feelings in this regard led the team in the wrong direction at the beginning.
Although the twitching while sleeping continued, we continued hiking in early June, and there weren’t any other symptoms of significance until the evening of June 17th, thus, almost 18 days later. We spent the entire next day in an emergency room, but they sent us home, telling us that she was fine to go home and that they were not in the business of making diagnoses. For two days following that, she appeared to be back to normal, even when I took her to another hospital for a spinal tap at 4pm on Friday, June 20th.
The hospital where we went for the spinal tap wouldn’t let her come home because she failed the finger-to-nose test, and by Monday, she was in a light coma. She came out of the coma from time to time, but less and less as the days wore on.
Sorry, I rambled on quite long with this...
Hope this helps,
(Lori has my email)
By Chris on December 3, 2014 - 3:04pm
I'm not a doctor, but my understanding is that you cannot obtain a definitive diagnosis until a post-mortem brain autopsy has been conducted. Alternatively, brain biopsies can sometimes provide a definitive result, but these are very dangerous and can give false negatives; moreover, they don't seem to be favored unless there are extremely compelling extenuating circumstances.
Before death, the "14-3-3" test is common, but it has only a 72% accuracy rating and takes several weeks before the results come back. The newer RT-QuIC test is supposed to be 99.2% accurate and returns results in a couple days. Both of those require spinal fluid (CFS).
There is much talk of a new nasal test that doesn't require CFS, but I'm not sure whether the test is publicly available, yet. You should certainly inquire about it.
In my wife's case, the MRIs and EEGs taken together suggested CJD as a strong possibility, but were not persuasive enough to provide a definite diagnosis. Note that the National Prion Disease Pathology Surveillance Center typically performs the post-mortem brain autopsy at no charge to you, and it takes up to 90 days for the results.
Don't expect your doctors to know about any of these tests, because CJD is very rare, and the vast majority of medial professionals have no experience whatsoever with diagnosing this disease.
Hope this helps,
(Lori has my address)
By Brian on December 2, 2014 - 6:04pm
Carolyn how long did your dad live after his first symptoms came about? how did he get the diagnosis - MRI, EEG?? What did they say about MRI images? My wife is going through the same thing, we think it's CJD, I'm just wondering how other people got the diagnosis - like can they see anything on the MRI scans?
By Chris on November 28, 2014 - 8:45am
Here in Asheville, NC, we did not experience the "stigma with CJD" that you mention. That said, there was a great deal of stigma at the funeral home, at first. Our hospice social worker tried to mitigate this and had very little success, even after pointing out the National Funeral Directors Association "official" guidelines for such cases. However, when Duke University contacted the funeral home to arrange for the transfer of Laura's brain to Case Western for the autopsy, they must have explained things to the funeral directors, because everything went smoothly from that point forward.
Next we experienced some concerns when looking for a cemetery, because Laura had wanted a "green burial." The National Green Burial Council was very helpful with this and offered a location less than two hours away in SC as a backup in case we encountered reluctance in our area, which has only two cemeteries that even provide for green burials. Fortunately, we found a cemetery very close by.
(Lori has my address)
By Chris on November 28, 2014 - 8:17am
Annilaurie, I'm so sorry to hear about your father succumbing to vCJD in April 2013.
You mentioned it was vCJD, but are you sure about "v" part? The CDC fact sheet states that only 4 cases of vCJD have occurred in the USA: in 2004, 2005, 2006, and 2014. If you received that diagnosis from a Case Western brain autopsy, and they never reported it to the CDC, then something doesn't add up. You said you "believe there are more than 1 in a million," and so do many others, including some doctors.
On the other hand, if your father did not die in the USA, then he wouldn't have been counted in those statistics. So, I'm assuming this did not happen in the United States, right?
(Lori has my address)
By Arturo on November 27, 2014 - 3:12pm
Happy Thanksgiving family!! I for one am thankful for this guest book that allows us to comfort and empathise with one another. I am also thankful for the foundation and the powerhouse of empathising board members. If we did not have the foundation, I for one would be overwhelmed with emotion. Thank you.
By Carolyn on November 25, 2014 - 8:34pm
Annalaurie, I was moved by your post and saw so many similarities in my dads presentation of this disease. He too had tingling in his arms, he talked of pressure on part of his head, he suffered the frustration of forgetting how to work the garage door opener, the tv remote, or how to feed the cat. Yet he knew there was something terribly wrong. He could discuss politics, current events, family history, but couldn't remember his morning routine.While my siblings and I frantically googled rapid loss of cognition, CJD kept coming up. I read the symptoms and felt reassured. No, he's not hallucinating, no insomnia, in fact he was sleeping more than usual, no he doesn't have tremors. His gait was ok. It never occurred to me that he didn't have those symptoms YET. We too searched for answers. I remember telling the doctors we could handled the truth. We just needed to know what the truth was. We shared your experience of interacting with him til the end. He too could only move one arm. The glances and touches we shared are a gift I will forever treasure. He loved us so, and let us know it. We lived surrounded by grace. Thanksgiving Day will mark the 3 month mark of his passing, and we are so thankful for him!
my advice to those going through it right now: live in the moment, journal conversations and events, research the disease and have flexible plans in place to deal with each symptom as it presents, share feelings and tears, share regrets and gratitude, take pictures and videos, laugh, look for those moments infused with meaning and holiness. Accept offers of help with tasks such as meals, shopping and lawn care. Pray together. Establish structures and consistency in the day as much as possible for as long as possible. Structure was comforting to my Dad when he lost the ability to recognize patterns or even time. One particularly rough morning he asked my mom if it would get dark again that night. Keep the household picked up and organized. He would wander around the house picking up objects and moving them as he couldn't figure out what they were for. Order became important. When he was bored, restless and agitated, music seemed to help. Watch for signs of agitation with visitors and limit visitors and visit duration as appropriate. Keep conversations simple. Multiple people talking at once was very confusing to him. Be careful with jokes as your loved one may no longer understand "kidding.".
We did not receive a miracle of a cure, but we received the miracle of finding strength, gratitude and absolute love in the process of going through it. And the reward of knowing how very pleased and proud he is that we came together to care for him. So blessed.
By Arturo on November 19, 2014 - 1:14pm
I'm sorry to read of your dad's passing This disease is cruel and is completely surreal. When I read of your dad's age I was shocked. The cases of vCJD I have read about have had taken our loved ones below the age of forty. My dad passed 12 years ago after a 4.5 month battle with sCJD. Passing one month after his 48th birthday. They say every case of CJD is different, but the symptoms you described that had afflicted your dad were pretty much the same symptoms that my dad had.Thank you for sharing your story with us. Take care, God bless...
By Annilaurie on November 18, 2014 - 11:50pm
April 2013 I lost my father to vCJD. Dad died a few days before he would have been 67.
In November 2012 Dad and I were dancing at my wedding, in March Dad started seeking medical attention to try and figure out why he wasn't feeling well, in April he died.
Symptons: I remember Dad telling me he was having trouble sleeping. He said he was having hot spots in his head, but no fever.
The hot spots continued..Dad went to several Doctors and none could find anything wrong. Dad knew something was wrong, test after test showed nothing.
One day I was on the phone with my father and he locked himself out of the house, he completely freaked out and then his voice started slurring, I though he was having a stroke.
Dad went to the hospital, they told him he had a stroke and sent him home. A week later my sister and I went to visit, Dad was behaving normally except his voice was slurred.
Dad complained that evening about having tingling in his hands. The next morning Dad got us up and said he was going to the hospital. He didn't feel good, he was scared.
The hospital ran more test.... Still nothing. Dad insisted on staying in the hospital, he wasn't leaving until they found what was wrong. He knew he was very sick. One week later in the hospital, they still found nothing. Dad was moved to another hospital and entered into Rehab to recover from his stroke. Rehab was going well for 4-5 days... Dad was soon unable to talk, he emailed on his iPad, then within days he couldn't us his iPad. He went from recovering from a stroke to "come now your father is fading fast".
Easter Sunday we got the call to come, now, to the hospital. Disbelief and panic set in. 5 days later CJD was confirmed. Less than a week later Dad was gone.
Words can not describe the pain this disease brought to my family. It was as if a demon entered my fathers body. His eyes told you he knew what was happened, but he did not have control over his body. He could not speak, eat, walk, or control the body twitches. I still believe I am numb from the overwhelming pain of watching my father suffer without being able to help, there is absolutely nothing anyone can do to stop this horrible disease. You can only try to control the symptoms.
We prayed for healing that did not come. The family gathered and everyone was able to see Dad before he lost all senses.
Many tears were shed, Dad could not speak but his eyes spoke for him. My sister and my father did not have the best relationship, Dad could only move one arm, he held my sister and cried with her. It was as if he knew exactly what she needed, the love of her father. There were no unsaid words, love was shared by all, there was beauty in having closure.
My sister and I used the internet to play music from our church. We sang to Dad and prayed for Dad to be at peace. Dad was not scared, he was sad.
I don't know why this horrible disease was stricken on my Father. I only know God has a plan and it is only for good.
This is a horrible, unspoken disease, I believe there are more than 1 in a million that died from CJD. This disease is misdiagnosed.... Autopsies are needed to determine the confirmation of CJD. Once we knew Dad had CJD and would die we asked if we could donate his body for research. We were told no, because of his diagnosis they would not take his body. I was sickened... If we could not donate his body...how can we learn more about this horrible disease? We did research online and found Case Western, we called and made arrangements for Dads brain to be sent for research. VCJD was confirmed by the autopsy. Our prayer is that Dads brain will provide some clue to help stop this disease.
I few very unique things about my Dad:
Dad did not take meds unless prescribed by the doctor. Antibiotics
He would not even take Advil or Tylenol for a headache
Dad traveled the world
Looking back......some early signs were
Hot spots in his head that did not cause a fever.
Tingling in his arms and hands
Thank you for letting me share. I miss my Dad so much! I hope this post helps someone out there, I know it has helped me to be able to share.
By Arturo on November 16, 2014 - 6:10pm
I am sorry to read of your dad's diagnosis. Dealing with CJD alone is daunting enough, but this coupled with Muscular Dystrophy must be tougher. We are all here for you, as we al have walked (or walking) down this road. My dad passed twelve years ago, after a 4.5 month battle with sCJD. Passing one month after his 48 birthday. My dad was also a VA vet. From what I remember, they kept my dad on a isolated private room, until they reached the diagnosis and said we can take him home. He chose to spend the remainder of his days at home rather than hospice. When it came to the point where we were no longer able to care for him at home, my mom took him back to the VA and had a shared room this time. While in the hospital, they looked for convulsant placement. Many convulsant facilities denied him (because of their unfamiliarity of the disease) . That tuesday he was transferred to a convalescent hospital and passed that Friday evening.
If you would like to talk to a family on a one-to-one basis, feel free to email Lori (at the email address above this page). Take care, God bless...
By William Voyles on November 15, 2014 - 9:08pm
My name is William, my father was diagnosed with probable CJD a little over 3 months ago.He is progressing into rapid mental deterioration. When we got the diagnosis my father decided too sign a DNR, he has suffered from Muscular Dystrophy his whole life and a host of other problems. I have cared for him for 2 years full time now but his current mental state is quickly reaching beyond my ability. Hospice has been involved for a two months now and they are great. They are working with the VA to help me get my father place somewhere he will be safe but there seems to be a stigma with CJD and placement is hard. Has anyone else run into this issue?
By Chris on November 15, 2014 - 7:34pm
Lynn, I’m sorry about your mom.
Will she feel pain? The doctors and neurologists told us that Laura (my wife) would not feel pain. I do believe that she felt some mental anguish occasionally during the final week,or, for all I know, that might have been constant; but there was no indication of physical pain. Additionally, the doctors stated that her sense of hearing would remain until the end, and I observed that to be accurate.
Jenny: I wish someone had told me about that “Final Gifts” book before Laura died. Speaking about books and mourning, I’m just about to finish one that has been very helpful: “The Grief Recovery Handbook” by John James and Russell Friedman. I also appreciated “Reflections of a Grieving Spouse” by H. Norman Wright, although this latter tittle seems like it might be more appropriate for husbands simply because it is in the husband’s voice.
Patrice: Your post moved me very much, because Laura used to rest her head on my shoulder for comfort until she could no longer do so.
Jean: Today (11/15) it will have been 4 months since Laura succumbed to CJD. Like your husband, she was in 3 facilities, first we spent all day in an emergency room of one hospital. Then 20 days in the main hospital here in Asheville. We too, received the bad news on the 20th day, and the next day we moved to the hospice where Laura spent her final 6 days (she died on July 16).
(Lori has my email)
By Michael , St. Louis on November 13, 2014 - 2:33pm
Today (11/13)is 25 year anniversary of my mother's passing from GCJD at the age of 59.My brother passed away from GCJD 17 years later at the age of 56 on 11/17. God bless them both.
I must add that 25 years ago, nobody knew anything about CJD. The only information I had access to were 2 medical journal articles that the Neurologist copied for me.By today's standard, much of the information is now outdated and inaccurate. Believe me, progress is being made.
By Arturo on November 11, 2014 - 2:46pm
I am sorry to read of brother's diagnosis. My dad passed from sCJD 12 years ago. He courageously battled this disease for 4.5 months, passing one month after his 48th birthday. It is hard for your child to grasp the reality of this disease, a sentiment your brother's children maybe feeling. I was only 12 when my dad was sick. I couldn't deal with it, but at the same time I knew I had to be their for my mom, so I convinced that my dad was acting. Once my dad passed, reality quickly caught up with me and made me realize that he wasn't acting. He was actually sick. If you or anyone in your family would like to stay on one-to-one contact, please feel free to email Lori (at the email address abve this page). She will be more than willing to relinquish my contact information. Take care, God bless...
By Carol Benoche on November 10, 2014 - 11:07pm
My brother, and only sibling, has developed CJD about 4 months ago. He is 5 and 1/2 years younger than I, him being 71 and me 76, I always thought I'd be the first to go. He and I have always been close, especially
as children, when we were in a terrible accident,loosing our Father and almost lost our Mother.
I live in VA. and he lives in CA., so I feel guilty that I can't be there for him or my sister-in-law.
I flew out to see them 2 months ago and was so glad I did, as my brother was still communicating some and knew who I was then. Now I'm told he isn't able to walk, his talking is minimal he had tremors, and doesn't seem to recognize his wife. It was difficult to leave after a week, and needless to say it was probably the last time I'll ever see him alive.-- Difficult wasn't the word for it.. His 3 children have disassociated themselves from their father and step-mother, which is another heartbreaking situation.. I can't find it in my heart to communicate with them, for their mistreatment of their father. I feel I don't know them anymore, or perhaps I never really knew them.
My sister in law and I communicate, and she seems to be holding up better than I am at times, although she's told me how lonesome and alone she's feeling, with the burden of everything on her back. I love her and wish there was something more I could do to encourage her. I do correspond through e-mails and cards, but find it rather hard to talk over the phone. Guess that's why I'm pouring my heart out here. So thank you for listening.
By Jean T Greathouse on November 10, 2014 - 12:24pm
Patrice, like you, I was in mourning before my beloved passed. From the third day he was in the first of three hospitals, I knew our outcome was not going to be good. Then on the 20th day in our third hospital, when we were told he was dying, I went into full denial and began to distance myself from what was happening. Wednesday will be. Four months since he physically left us, but was gone prior to that. My thoughts and prayers to out to you. Please contact me if you'do like to talk.
By Jenny on November 6, 2014 - 10:45am
Darek~ Usually a CJD diagnosis is only made (or even suggested) after all other possibilities have been ruled out. It can mimic many other illnesses (many treatable), so those should be ruled out first.
Olivia~ I'm sorry to hear about your mom (and your grandfather). Some doctors believe that sometimes a traumatic event (big surgery, death in the family, divorce, etc.) can trigger CJD. Like Arturo said, all of us here can empathize with your situation. It's a tough road, one I wouldn't wish on anybody.
By Arturo de la Cerda on November 5, 2014 - 7:11pm
I'm sorry to read of your mom's diagnosis. The rapidity of this disease is unfathamable unless you have the misfortune to experience it. We all empathize with your situation. We've all walked (or walking) down the road you are on. My dad passed 12 years ago after a 4.5 month battle with this monster, passing one month after his 48th birthday. If you would like to stay in contact on a one-to-one feel free to email Lori (at the the address above this page). She will be more than willing to relinquish my contact information. Take care, God bless...
By Michael, St. Louis on November 5, 2014 - 12:28pm
Over the past 20 years, I have lost my mother, brother and a cousin that I grew up with. I have also researched my family by reaching and tracking down relatives I never met. I have concluded that in 3 generations, my family has lost up to 8 family members to GCJD. I am still researching.
My family came from CZECH 3 generations ago which has a high volume of GCJD.
Prayers are with you
By Olivia on November 4, 2014 - 3:09pm
My mom's doctors are all concluding that she has CJD. She started with some memory loss and confusion 6 weeks ago, but her dad just passed in Aug. She quickly declined to mass confusion and not being able to care for herself, within a couple weeks she went from watching my 16 mo old, changing diapers to wearing them herself. She has been in the hospital for 3 weeks now and has been through a battery of tests. They have pretty much ruled out all other options. She was such an active, vibrant healthy woman just a few short weeks ago. At this time she is on a feeding tube, rarely opens her eyes (when she does there is no recognition) and doesnt move except for the jerking, which has been minimized with anti-seizure meds. My step-dad's heart is breaking and we are both currently in a state of shock at the whole situation. We keep praying that they find something else, something treatable but daily I feel my hope diminishing and the reality of this CJD diagnosis setting in.