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By Jonathan Witmer on November 24, 2013 - 11:37pm
My beloved wife Elaine died one year ago today from CJD. I and my family all miss her still!,
By Sue Webb on November 24, 2013 - 9:08pm
On August 19, 2010 I lost my sister to CJD. She was diagnosed in May. Luckily she had a wonderful male companion that took care of her until her death. She was 62. She gave permission to send her brain to a clinic in Cleveland for autopsy. We were told she had a very very rare mutation that she was 1 in 4 people in the world to have it. It came from somewhere in our family. It still seems really surreal that she was taken from us by this rare disease.
By nora on November 24, 2013 - 6:48pm
Have a look at the redcrossblood.org website and look up CJD and vCJD, there are specific rules around donating blood in the USA, there will be many US citizens unable to donate blood due to the reasons given on this website. Here in the UK up to 60 million of us are still banned from donating our blood overseas due to the risks of being exposed to BSE but we are allowed to donate our blood in our own country which does not make sense to me really.
I hope the Prion Clinic can be of help to you.
By Ben on November 23, 2013 - 11:26pm
Nora, I have heard about that but thought it was kind of UK exclusive since vCJD never happens in the US "supposedly." I will look into it..thank you.
By Nora on November 23, 2013 - 11:27am
Have you heard about a blood test for vCJD, it is available to all neurologists, it was developed by Prof.John Collinge at the Prion Clinic, UCL, London if you google his name you should find their website. From what I understand they can test for vCJD not sure about CJD but it is worth contacting the Prion Clinic for help as I am sure this test is available to neurologists around the world. It is not an invasive test but a simple accurate blood test. I hope this helps.
By laura gilliam on November 22, 2013 - 11:43pm
Wednesday of this week, my mother in law was brought home to spend her final days...we have hospice there with her and were told to expect no more than 3 to 5 more days with her...we are still in shock over this disease and i thank all of you who have shared your stories and who have responded to mine...
By Ben on November 22, 2013 - 9:21pm
Thanks Jenny. I've now been informed that none of my old neurologists will see me since the test came back positive. It's as if I'm a plague or zombie or something. Talk about feeling like I'm on island. It's horrible UCSF now recommends I do a self referral.
By tina carlisle on November 22, 2013 - 8:58pm
I've not been or posted in awhile. It is so overwhelming to see so many new families suffering this horrible disease, my heart goes out to all of you. My mother passed away in August 2011. Because of no autopsy I don't know which strain took her from of lives. She was clinically diagnosed in June 2011. I now believe her symptoms began July 2010 after a fall in which she hit her head very hard. She began having episodes of blanking out while being spoken to, when she would rejoin us, she would begin talking about something totally different. IN February 2011, she awoke in the middle of night, went to the bathroom, woke my father up, then got back in bed. Within minutes she had what my father thought was a seizure. She was shaking and unresponsive. 911 was called and they too were unable to get a respond. At the hospital she finally came to, not knowing anyone in our family, not even her husband of 60 years. She was very aggravated and kept saying she had to go, where she did not know. Transferred to Pittsburgh UPMC, test after test were performed including 2 spinal punctures. Her memory was improving daily, we were informed that the protein level in her brain was over 400, when asked what was normal they said 50. They also did MRI, nuclear medicine study, 24 hours EEG, after the first spinal tap and protein level so high, they asked to do a second because they told us they felt the first was a mistake. The second spinal tap confirmed the first one was no mistake. One medical Dr there told us to be prepared it was something really bad, no mention of CJD was ever mentioned. The neurologists diagnosed her with the on set of dementia, she was released back to the local hospital for rehab! She was continuing to improve when we found out her husband had to have a quadruple by pass. She was on one floor of the hospital, my father on another. Because of Dad's surgery we had to place mom in a nursing home to continue her rehab. We had no choice, my father took top priority at that time. Mom settled in nicely and was progressing, until one day as she was walking to the dining home, she quit and her legs buckled, the next day she was in a wheelchair, she could no longer walk, she began hallucinating, she couldn't remember words, and again she didn't remember her own family. She eventually became very combative, disruptive, refused medication, and as she was reaching for some invisible things she fell out of her wheelchair. Taken to the hospital for evaluation, making sure nothing was broken, staff was ready to release her when my sisters-in-law informed them of the prior tests results especially unusually high protein level. She was again transferred to Pittsburgh, this to Allegheny General. The ER doctor checked her out said everything was ok, my sisters-in-law asked for 5 minutes and explained about all prior testing, he admitted her immediately. By them my mother was in a catatonic state. For four days she stared at the ceiling, the first neurologist that saw was shown her current EEG, she took one look at and looked at my mother, crumpled it up and threw it in the trash. She said what was showing on the EEG did not correspond with the condition my mother was in. That is when we heard those awful 3 letters, CJD, another spinal tap was ordered, this time it was sent to Case Western, 3 weeks later, I answered the phone, it was the doctor giving me the devastating news. Our family gathered in a room at the hospital, surrounded by doctors, nurses, and social workers with the news that forever change our lives. The social worker went to work getting my mother placed in a nursing facility. We had no choice of taking her home, my father at the time was 85 and was recovering from open heart surgery. In one day we were turned down by 9 nursing homes. The previous nursing home Mom was in denied her return, after we let her room go because we didn't know how long she would be in the hospital at the beginning. As long as we were paying there was never any mention of her being too hard to handle, a threat to other clients, or a threat to the staff. When we told the director we would let the room go, we were told it would not be a problem for her to return after her hospital stay. She changed her tune after she found out that my mother was unable at that point to do anything for herself and needed to be watched 24 hours a day, because mom still insisted she had to go somewhere we would never know!!! We were at our wits end when out of the blue we got a call from a nursing home within 10 minutes of our family home. Finally she was transferred close enough to home that all family and friends could visit any time. At the time we were going through this I did not have access to my computer. I did not know of this wonderful web site until over a year after my mother died. Like so many of you we did not know what to expect, what to do, where to find answers. After the tests results confirmed CJD and our initial meeting with hospital staff, with no hope, no treatment plans, only hospice care and comfort medications, we had very difficult decisions to make. My mother was on medication for her heart, high blood pressure, diabetes, arthritis, she had a UTI that was not clearing up with oral medications, they wanted to insert a port for antibiotics. I've mentioned my sister-in-laws which are wonderful and more like sisters. I am the only the daughter, with 2 brothers. The night after the meeting the three of us sat down and weighed all information. That night we agreed to end all medications except comfort medication, no more pills, no port for antibiotics, no more insulin. We realized if the doctors could give us not one glimmer of hope there was no point to prolong trying to keep her heart from failing or stroke from high blood pressure. We knew at that point it was no longer in our hands, and that we had no control. We put her in God's hands where she always had been. That night as we sat on the front porch of our family home and cried we knew it was not about us! It was about our mother and what was best for her and what she had outlined in her medical directive. For those of you reading this, as hard as it is you must put your loved one above all else, what would they want, this is their journey and your responsibility now is to make this journey as safe, and easy for them. Listen to what they want, let them tell you their fears if any, do not be afraid to crawl in bed and hold them close, take pictures, and tell them everything you have in your heart! Do not let anything go unsaid. Take joy in caring for them, CJD not only steals their life it steals their dignity, they know the things they cannot do that was once second nature to them. Your tender loving care if the greatest most precious gift you can give them now. Taking care of my mother at the end of her life was my last gift to her and the most precious. I too filled out the questionnaire , and it felt good to do so, but I have never had any feed back from it. It's been 2 years and 4 months since my mother left me, at times I still find myself picking up the phone to call, only to realize she's not there. For those of you with questions and may just want someone to talk to that have walked the path you find yourself on, please call Lori and ask for my information, the holidays are upon us and I know how heartbreaking it is to be without someone you loved so dearly. I am willing to share your heartache, your concerns, and just another shoulder to lean on!
By kathleen on November 22, 2013 - 12:24pm
It is so disheartening to read of so many new people affected by this horrific disease. This is such a wonderful place to come, though. There is comfort and understanding on these pages. You can vent, cry or just tell your story and the story of your loved one. It's been a wonderful help to many, many people.
By Jenny on November 22, 2013 - 11:00am
Ben--I'm sorry to hear of all the symptoms you've been experiencing. Not sure if you live in the S.F. area or not. If you do, certainly go see Dr. Geshwind at UCSF; but if you don't, he can read your MRI. My dad was seen by a ton of different doctors, had an extraordinary amount of tests, etc., but Dr. Geschwind was the only one to diagnose his CJD. As you may know, every case is different. There are certainly similarities, but age, symptoms, duration, etc can vary. My dad had different symptoms than most, and his illness lasted much longer than most. His diagnosis was confirmed by autopsy. Best of luck to you. Please keep us posted. I hope you get into UCSF soon.
By Ben Brickman on November 21, 2013 - 8:37pm
Hello everyone. My name is Ben. In July 2012 I begin to experience major psychiatric symptoms such as depersonalization and derealization as well as dissociative thoughts. In October 2012 my memory began to fail, starting with words, then long term memories, by March 2013 I began to become disorientated driving to and from my own house also around that time my short term recall began to fail, I could barely remember what I had done the day before and everyday was like a blank slate. I went to Mayo Clinic in May seeking answers and got none. They did an EEG and MRI as well as more blood tests than I can even count. I asked the neurologist about a prion disease and was immediately dismissed because of my age( I'm only 28). Because of time limits I was not able to stay at mayo for all the appointments and had to come back home. Throughout the summer my memory worsened and I began to forget if I had taken my medication and what meals I had eaten that day. Also my depression and feelings of terror worsened. On July 5th I saw a cognitive neurologist at the University of Missouri and he reluctantly agreed to do a Lumbar puncture. I must admit that I waited several months for it out of fear of the results but as my short term memory continued to worsen I finally built up the courage. I had the spinal tap on October 30th and received news Monday night that it showed elevated amounts of 14-3-3 protein. Since then the doctors who ordered the test have been very slow to react. The cognitive neurologist refused to see me again and the one who ordered it said he did not know what to think. Neither will diagnose me or say that I don't have CJD or vCJD. I am scared and feel so alone and helpless. To anyone who feels this way please know that YOU ARE NOT ALONE. I'm now trying to get into the UCSF memory and aging center for further evaluation. All this while still trying to hold down a job. This is my story. I'll update you with any new developments. -Ben
By Jenny on November 21, 2013 - 7:20pm
To all the new contributors to the guestbook: I am sorry you are here! Breaks my heart to check in every few days, and see new people here. I have found much understanding and support here, with people who truly know what we're going through, and have been through; I hope you find the same.
By Skip on November 21, 2013 - 3:55pm
My wife diagnosed with CJD last Friday, first symtoms 4 weeks ago now in hospice and she is starting to have troboule swallowing.
By Dawn on November 21, 2013 - 12:20am
We buried my dad today. He was diagnosed with sporadic CJD on November 8 and passed away November 14. We are stunned and confused as to how this happened. He was 80 years old and had just been given a clean bill of health after surgery and follow up appointment. So many unanswered questions, as he didn't fit the "normal" statistics for this disease.
By Arturo de la Cerda on November 20, 2013 - 5:16pm
I am sorry to read of your loss. This monstrous disease is relentless in every sense of the word. My dad passed away 11 years ago. He battled this monster courageously for 4.5 months, passing one month after his 50th birthday. If you would like to stay in touch with a family member who has been down this road, do not hesitate to contact Lori (firstname.lastname@example.org) she will be more than willing to relinquish my contact information. Take care, God bless...
By Danielle Judge on November 17, 2013 - 9:37pm
I just lost my sister to this horrible disease. She was just diagnosed on Thursday and by Saturday she was gone. My heart goes out everyone dealing with this. Until this week I had no prior awareness and I have no idea how to process this. It is like a bad dream...
By Jenny on November 17, 2013 - 2:57pm
Sorry to hear of your mother-in-law's diagnosis. Unfortunately, there is no way to know how much time is left for her. Most cases are very, very quick---sometimes days, often weeks or months, and occasionally a year or two. My dad's case was about a year and a half, and that was quite rare b/c of the long duration. But, every case is different (exact symptoms, duration, etc.). I hope you and your family have the help and support nearby that you need. Please check back in on here; it's a great place to find support who truly know what you're going through.
Hang in there.
By Arturo de la Cerda on November 16, 2013 - 3:06pm
I am sorry to read of your mother-in-law's diagnosis. The insidiousness and rapid progression of this disease is very disheartening. My dad passed 11 years ago to sCJD after a 4.5 month battle If you would like to stay in contact with a family on a one to one one basis. Take care, God bless...
By laura gilliam on November 16, 2013 - 5:12am
I am sorry to say that my mother in law was diagnosed this past week...her progression has been rapid...going from driving herself to being unable to talk or swallow and showing signs of hallucinating after 10 days...memory lapses and vision troubles have been plaguing her for the last few years but we thought it was just signs of aging...any advice and/or experience is welcomed...we understand that this disease is fatal but we are unclear on how much time we will have left with her since the symptoms have progressed so rapidly in our eyes...statistics say weeks to months maybe even years...please share your experience with us so we may come to terms with what lies ahead
By nicole yawn on November 13, 2013 - 9:48am
Michael, your posts indicate familial CJD. Might we correspond via email? I am giving permission for you to receive my email address. Also, I'm on facebook. Thanks.
By nora z. on November 11, 2013 - 11:22pm
My Dear Beloved brother tomorrow marks 2 years 11/12/2011 that you were taken from us due to CJD, We still need answers about this diesese. It took you so fast, that we were left so lost and still are. I miss and need you so much and I hope and pray that this diesese would disseapear so that no other family would feel the lost that I/we live with. Until we meet again, Happy Veterans Day.
By Michael on November 7, 2013 - 11:48am
I have had several immediate and extended family members pass from Genetic CJD. Only within the last 10 years or so (I believe), has the Red Cross placed restrictions on family members not giving blood.
For many years after my mother passed in 1990 from GCJD there were no such restrictions.
By nora on November 7, 2013 - 10:53am
Sorry to read about your brother passing away from CJD, here is the UK patients are given NHS advice leaflets on the risk of CJD via blood transfusions, also I believe that there have been CJD disclaimers on the blood bags since 2007. If you google these titles I am sure you will find a lot more information on this subject:
'CJD fears for transfusion patients'
'Expert warns of vCJD blood transfusion risk'
'Patient dies after CJD transfusion'
'vCJD death linked to blood transfusion'
'Blood donation fear after CJD alert'
'First UK death after 'CJD' transfusion'
By jeannie houser on November 7, 2013 - 1:02am
My brother passed away on September 25, 2013. His death certificate says he died #1 pneumonia #2 CJD. He had an autopsy and have indicated they believe it was sporadic...which we are thankful for. He was 57 years young. It happened so fast that we are still in shock and it feels surreal. Anyway, since it wasn't familial I am now on a quest to find out why. He had an aortic dissection in 2003 which required 43 pints of blood. Do you think they are being totally honest about the blood supply or (even though this sounds like CSI) would they be capable of covering it up so as not to cause a panic and the panic affect the way blood is now donated or the possibility of having a panic on their hands. I just can't help but think this was caused from something that he came in contact with. Any opinions greatly appreciated.
By Kristin on November 5, 2013 - 2:59pm
Tomorrow will be the 2 year anniversary that I lost my Mom to sCJD.
We all miss you Mom/Grammy, sending lots of XOXOXOXOXOXOXO's from Alex, Katelin and Me!
By Michelle in Philadelphia on November 5, 2013 - 1:09pm
After my beloved uncle died from CJD in July, after feeling so incredibly powerless, it felt somewhat empowering to fill out the patient and family questionnaire (available on this Web site and from the CJD Foundation). I am so hopeful that maybe something about his risk factors could be helpful to the researchers who are studying the disease. (And maybe the cause of his CJD would become apparent.) So, I was curious, have any of you been contacted by researchers with regard to the information on your questionnaire?
By Jenny on November 4, 2013 - 7:32pm
Lisa--Sorry to hear of your father's diagnosis. This disease is so hard to diagnose; many of our loved ones were repeatedly misdiagnosed along the way...it's only through eliminating various other illnesses that we're left with this one. Please check back here often. We've all been where you are; as terrible as it is to be here, it's nice to be amongst people who have been in a similar situation. My dad passed from sCJD about a year and a half ago. It still doesn't seem real. Best wishes to you and your family.
By Nora on November 4, 2013 - 6:43pm
There is hope having read this in the news today there could be a cure for CJD in the near future, no harm in contacting the university in question for trials.
By Lisa Wilson on November 4, 2013 - 2:07pm
My father was just diagnosed with CJD by brain biopsy today. Unfortunately he is already in hospice care and within days of passing. We believe he was misdiagnosed months ago. We are struggling to find answers. It is comforting to know there are others out there for support.
By Arturo de la Cerda on November 3, 2013 - 12:36pm
I'm sorry to read of your husband's demise to this monster. This disease does not discriminate robbing our loved ones before their time. My dad passed from this monster 11 years ago, after he courageously fought this monster 4.5 months. My dad passed one month after his 50th birthday but looking back we saw symptoms well into his 40's to late 30's. This disease seems to be covered up quite frequently seeming because of the the assimilation to BSE. But regardless of the method of transmission, their needs to be more information out their. Take care, God bless...