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By T.B. on October 23, 2014 - 1:42pm
My dad was a vivacious, funny, full of life kind of man and loved everyone. In September of 2013, he began to display signs of confusion. He went around the house unplugging things. Oh, I should mention, he was in the electronics and scrap metal business for a long time. He forgot where his keys were although they were in his pocket. He put the house key in the ignition of the car. He forgot how to use a cell phone and unlock the front door. It goes on. After a month of these changes, we decided to have him checked out. The neurologist's suspicion was CJD. After a battery of tests (including a lumbar puncture) and a week in the hospital, the neuro said the results were not indicative of CJD.
My dad's condition worsened. Bowel and bladder functions ceased, his mobility became less, his cognitive functions decreased, he had a series of seizures and was hospitalized several times. We took him to see another neurologist, a hematologist, cardiologist and primary care giver (more exams). All reports pointed to dementia or Alzheimer's (Alzheimer's does not progress rapidly like this). He took a fall at home and was hospitalized one more time. From here, we had no choice but to put him in a nursing facility. This all happened so rapidly. A nursing home was the LAST place I expected to EVER put my father!
Once in the nursing home, he declined further. His body became contracted, although he still had strength in his hands, he could squeeze like the best of them! But he could no longer walk. By the end of May 2014, he was no longer speaking. Oh how I wished I could hear him call me his "little girl" one more time. He was alert, but not verbal or mobile. He eventually stopped opening his mouth to eat, a feeding tube was placed as Mom was just not ready to let him go. In September 2014, dad developed pneumonia along with several wounds and infections. He was hospitalized once more. The attending MD told us, in a very caring manner, but factually, that the end was near and she felt his condition was caused by Vascular Dementia...also a rapid progression type. We put hospice in place. Dad was stable enough to return to the nursing home. Sadly, he died 2 days later.
It has been a whirlwind to say the least. Because it happened so fast, and the attending MD at the hospital thought it was a form of dementia not CJD, we never even thought about an autopsy to determine the actual cause. Now I wish we had.
To anyone who's loved one is declining rapidly with all symptoms pointing to any form of CJD, I say put in place an autopsy. It will give you some peace of mind.
God Bless all of you who are going through this.
By Arturo on October 23, 2014 - 1:40pm
your comment did not sound crazy. I, along with many other families, believe there could be an environmental factor (whether it be exposure to BSE or otherwise) in the high percentages of Sporadic CJD cases. BSE and nvCJD (along with Feline Spongiform Encephalopathy) has shown us that the Prions can cross the species barrier. But there's still is so much unknown about Prion disease and CJD. Take care, God bless...
By Michelle in Philadelphia on October 23, 2014 - 10:59am
A few years ago, the CDC investigated whether there was a link between some people with CJD and working and/or eating at the Garden State Race Track in Cherry Hill, NJ. (It was a large track where you could gamble on horse races.) The CDC determined that there was no link. I hope what I'm about to say doesn't sound crazy, but I want to put it out there just in case any researchers are still considering this link. My uncle, who died from CJD in July 2013, lived one town away from the racetrack. He never worked there, and I don't know if he ever ate there, but he did go there each year to get horse manure, which he used to fertilize his large vegetable garden. (I did request that this information be added to his patient registry information.) So knowing that there already has been a suspicion of a link between CJD and this racetrack, I can't help but wonder if there could have been anything in the horses' diet containing prions, which got onto the vegetables that my uncle ate.
By nora on October 22, 2014 - 11:19am
message for jasmine, please could you contact me via Lori she should be able to give you my e-mail address I have some very helpful information for you, it contains contact details and advice which I am unable to post on the guestbook unfortunately.
By Jenny on October 22, 2014 - 10:54am
Chris~ It is my understanding (and I'm not a doctor, nor do I have any medical training whatsoever; but I have read a bunch for a "layperson" on CJD) that the subtype designation on the autopsy report is based solely on the pathology findings. And I experienced the same thing you did regarding the subtypes: I was surprised I didn't come across information on them earlier in my "research."
Lorraine~ You have some very good points and tips. Sorry for your loss.
By lorraine collins on October 21, 2014 - 11:54pm
It is four years ago since my husband died of CJD at 66, diagnosed 6 months earlier seemingly
very healthy. I encourage, like most people on these pages to seek out others who have gone
through this experience as caregivers and how this disease progresses. Create a support group
of friends and family to share in supporting you and your loved one. Just hug your loved one
and accept help from friends and family and understand the fast progression of the disease.
We received medical support from UCSF San Francisco and our local Hospice. My love and support
go out to all CJD families
L. Collins/Santa Rosa CA
By Chris on October 21, 2014 - 5:38pm
Finally received the results from Laura's brain autopsy from the NPDPSC. I was emailed a scan of the letter on October 17, which was day 92 from when they received her brain, and also Laura's and my wedding anniversary. The first paragraph confirmed sporadic Creutzfeldt-Jakob disease (sCJD)MM1, with the final sentence affirming that Laura's case is not familial, according to the current criteria for familial prion diseases. That last bit of information is of great comfort to the surviving sisters, nieces, and nephew who witnessed the death of Laura's younger sister just 2 years earlier from an "undetermined" disease, and their father the year before that, from Alzheimer's.
They had originally said the results would be ready within "90 days," and so I waited 90 days, and then I phoned on the next day (October 16), only to discover that the autopsy report had been mailed out ten days earlier (October 6) to the four doctors I had named on the submission form and also to the NC DOH. None of those doctors notified me, nor did the NPDPSC inform me of the mailing as they had promised they would. If I hadn't called for a status update on day 91, we might still be waiting for the results.
The "MM1" subtype designation puzzled me, because I hadn't encountered that in any of my voluminous reading about CJD. Subsequent research revealed that there are 6 subtypes, and MM1 is the most common. According to “Advances in Prion Disease Surveillance," the MM1 subtype is characterized by “Rapid progression (<4 months), PSWCs on EEG, prominent and early myoclonus, and synaptic patterns of immunostaining.” Those features describe Laura’s case perfectly. Moreover, the average onset age for MM1 is 63.2 (Laura was 63.7), and the average duration is 3.9 months (Laura's serious symptoms lasted only 26 days, but now, in hindsight, some minor events that we took to be innocuous “senior moments” may very well have been earlier symptoms of CJD).
According to what I’ve been able to learn concerning the various subtypes, Laura was a classic example of “MM1” in every way. However, I wonder if the pathologists made that determination based purely upon the autopsy, or did they also consult Laura’s medical records, which I had sent to the UCSF Memory and Aging Center, and/or my timeline of suspected symptoms that I had sent to both the USCF center and the NPDPSC.
(Lori has my email address)
By Arturo on October 21, 2014 - 12:54pm
I am sorry to read about your cousin's fight with this monstrous disease. This is truly heartbreaking to say the least. My dad passed 12 years ago, but it still feels like yesterday. He fought courageously for 4.5 months, passing one month after his 48 birthday. If you would like to stay in one-to-one contact with me, feel free to email Lori (at the email address above this page). Take care, God bless...
By nora on October 21, 2014 - 9:48am
I am sorry to read that your brother may have CJD, I have read of many young people under 30 years of age who have developed vCJD, is it possible that his doctors/neurologists could send a sample of his blood for testing? I have read that some people send blood samples to scientists in Italy & the UK if this could be done for your brother at least CJD/vCJD could be ruled in or out, hopefully out. I am sure the CJD foundation has plenty of information available about these blood tests and those scientists around the world who specialise in testing for this disease. I also read that there are nasal and urine tests currently being developed your brother could be put forward for trials worth asking about this, perhaps the CJD foundation could help you.
By Andrea Boiko on October 20, 2014 - 10:45pm
Olá, minha mãe faleceu em dezembro de 2013, vítima de vCJD, doença muito cruel, infelizmente aqui no Brasil não há muita informação. Muito triste.
By chrissie on October 20, 2014 - 9:22pm
My cousin is now in the last stages of CJD.so heartbreaking! :(:(
By Jenny on October 17, 2014 - 8:01pm
Jasmine, I don't know/remember the description or results specifically. You can call Dr. Geschwind's office and ask them to explain the results to you?? Good luck.
By jasmine on October 17, 2014 - 1:15pm
Jenny... i think dr. geschwind look at it.
what was the description you got for his mri by ucsf can u write it here?
By Jenny on October 17, 2014 - 9:37am
Jasmine~I can't say that UCSF can't be wrong; anybody can be wrong. But Dr. Geschwind and his team are considered the "experts" by many in identifying CJD by MRI. Did they ask for certain types/views of MRIs, and were they recent? Was it Dr. Geschwind that looked at your brother's MRI? He was the only doctor in my dad's case to correctly diagnose CJD by his MRI (tons and tons of doctors were involved in my dad's case, and CJD was confirmed by autopsy).
By jasmine on October 17, 2014 - 5:14am
the UCSF looked at one of my brothers mri and said they didnt see anything that is typical of cjd. could they be wrong?
By Jenny on October 16, 2014 - 5:59pm
Hi Jasmine. Sorry to hear of your brother's possible diagnosis. I'm certainly not a doctor, but when someone is given a diagnosis of something fatal, I would not hesitate to get a second opinion. I've heard of some of the symptoms you describe as coming with CJD, but not all of them. From what I've read, MRIs are usually the best way to determine if it is CJD. EEGs aren't always indicative, and even the 14-3-3 isn't always either. I would contact UCSF and have their memory department read your brother's MRIs (free of charge, if there's a diagnosis of CJD). Those guys are the experts, in my opinion. Best of luck,
By jasmine on October 16, 2014 - 5:12pm
thank u so much for your answer. can u find out what the MRI, EEG, lumbar puncture showed, like what the docs say in the reports?
i been told by many people that first eeg shows slowness of activity then it shows the periodic discharges or something like that. did they find any of that on your dads eegs?
what did the mri report say?
was the 14-3-3 test positive?
By Arturo on October 16, 2014 - 4:30pm
From what I remember they did numerous EEGs, MRIs, a lower lumbar puncture test for the 14-3-3 protein. Their was more testing done, but I don't remember what exactly I am going have to ask my mom, Feel free to email Lori, she will be more than willing to relinquish my contact information. If you'd like to stay in one-to-one contact. I'll post the test as soon as I get home. Take care, God bless...
By jasmine on October 16, 2014 - 4:05pm
which tests did they do on your dad? did they find out anything abnormal on his MRI and EEG??
By Arturo on October 16, 2014 - 12:29pm
I am sorry to read of your brother's diagnosis. Just hearing those three letters, CJD, sent chills down my spine. My dad passed 12 years ago (this Saturday). He battled Sporadic CJD courageously for 4.5 months,l passing one month after his 48th birthday. In the medical community CJD is regarded as, the "Great Mimicker" because it has so many similar symptoms of other neurodegenrative diseases. I hope and pray you do not receive a diagnosis of CJD, your brother is way to young. Take care, God bless...
By jasmine on October 16, 2014 - 6:02am
My brother who's only 28 years old has been given the diagnosis of "possibly' cjd. His symptoms started a year back with bad memory, depression and agitation. now he's demented and has really bad balance problems.
one thing i dont understand though is that he had (and still has) a lot of other symptoms that the docs can't explain. like he has severely dry mouth (so dry that his tongue is almost completely white), bleeding gums, TMJ, hair loss, complains of feeling cold all the time (like ice cold feet), nausea, frequent (but not daily) diarrhea, electric sensations on top of head and down the spine, bloated belly, tingle sensations in groin area and in feet... are these cjd symptoms? we want to get a second opinion on his diagnosis, as it seems there are too many symptoms he has that don't seem to be cjd related. would love to hear from other cjd families, if their loved one experienced these things.
oh and i shud mention that his mri and eeg are normal even though he has been really sick now for months.. is that normal in cjd?
By Arturo on October 15, 2014 - 12:14pm
I am sorry to read of your mom's passing. This monstrous disease shows no mercy in its rapidity of progression. You are now apart of a unfortunate but elite family. We've all walked down the road you and your family are walking on. My dad passed 12 years ago (this coming Saturday). He courageously battled Sporadic CJD for 4.5 months,l[ before passing one month after his 48th birthday. If you would like to stay in one-to-one contact, feel free to email Lori (at the address on top this page) Take care, God bless...
By Lesley Miller on October 15, 2014 - 11:08am
I am new to this site, but I have looked at it often since my mother was diagnosed with CJD on Septmeber 23rd. We lost her the following Saturday on September 27th.
She first started showing symptoms we think almost exactly a year before her death. It wasn't until August that the dementia started and we realized that she was probably not going to recover. My family and I had not heard of this disease until the doctors brought this up as a possibility. We are so very devastated still at her passing and for me personally so very lost without her.
By nora on October 10, 2014 - 4:19am
I am so sorry to read that your mother has been diagnosed with CJD, as tina carlisle has said there are other open and closed CJD groups where you can reach out on facebook,the more we reach out the more awareness we can raise about this disease.
I am sorry to read that your young sister died from CJD, the difference between Ebola and CJD is that CJD incubates in humans for many years, I have read that scientists beleive it is upto 40 maybe 50 years.
Hopefully with the advancement of CJD testing it will be possible to test for CJD from urine samples and nasal brushing, I believe this information is on this website but you can google it. How CJD is psread seems to remain a mystery though.
By tina carlisle on October 9, 2014 - 8:58pm
Aimee, I am so very sorry for the news your family was given today. I remember so clearly the day our family received that devastating diagnoses. My heart goes out to you and your family. If you would like to talk personally, please contact Lori for my phone number. I know that right now you are in shock, and do not which way to turn. All I can tell you is to take each day as it comes. Treasure each and every moment. As hard as it is journal this experience either by writing or video. Take lots of pictures, in time you will treasure them. Most of all let your mother tell you all she needs to say, (if she is still able) and you in turn tell her all that is in your heart. Don't be afraid to cuddle close to her, she will feel great comfort and security and most important she will feel your love. This journey is a painful one, filled with questions that cannot be answered, the unknown is what it hardest. Each person in unique thus their journey through this disease will be their very own. Care for her with all the love you have, treasure all that you will have to do for her, as hard as it was I took comfort in feeding my mother, reading to her, pushing her out into the sunshine. We found that music was very calming, my mother couldn't remember us, but sing all the words to "you are my sunshine". Your mother is my age, so I imagine you are a young lady, as a daughter I know the pain you are feeling, I know how scared you are, and I know how lost and alone you feel. I offer you a safe haven to vent your feelings, an ear to listen, and an open heart to welcome your pain. You and your family do not have to be alone in this journey. Our family did not have the benefit of knowing about this wonderful site. There is also a face book site for families like us. It is called CJD Family and is a closed group. All you have to do is make a friend request. That site will allow you to ask questions, vent your anger and frustrations, but most of all give you the strength and courage to get through this hell you are living. My offer is extended to your whole family. It truly helps to talk personally with someone that has experienced the heartbreak of this disease. My mother passed 3 years ago, I miss her more with each passing day, it is for her that offer myself to others. One in a million is a very lonely place to be, that's how our family felt, so if I can share with others and make this journey less lonely, I honor my mother's life and she did not die needlessly. For all others that read this, the offer is open to each of suffering in pain. May strength and courage reach across the miles and ease this path .
By Linda on October 9, 2014 - 8:05pm
I lost my sister seven years ago to this horrendous disease. She was only 49. And people are worried about EBOLA? I just don't get it.
By Aimee Bone on October 9, 2014 - 6:02pm
Today my mom was diagnosed with CJD. I am stunned, and feel so lost and overwhelmed. She is 59 years old and was mostly healthy until early August. It took about a month of endless tests, observations by her doctors, and ruling out all other possible diseases to come to this conclusion, and her doctors shared with my dad, sister, and me today that they are 95% certain in their diagnosis. It is so rare, and seems so unlikely, and I can't begin to wrap my mind around this. I am hoping that becoming familiar with this site will lend us some support and educate us as we come to grips with this devastating diagnosis.
By tina carlisle on October 9, 2014 - 5:18pm
I posted a message earlier to Meriella, please know that the offer of friendship, an ear to listen and heart filled with pain, extends to anyone who needs someone to talk to. I have shared my experience with others going through this monster, and those that have lost someone form it. Please contact Lori for my personal information. My heart goes out to all of you.
By tina carlisle on October 9, 2014 - 4:58pm
Mariella, if you would like to talk personally you have my permission to contact Lori for my personal information. It is best to reach me by phone. My heart aches for your pain and sorrow. I lost my mother 3 years ago to this monster. The emotions your are feeling are all normal. Your life has been turned inside out and upside down, and I am certain you do not know which way is up. Grief has no rules, no right or wrongs. There are also no time restrictions, so don't allow anyone to tell you it's time to move on. Take each day as it comes, embrace this time with selfishness, for this pain is yours and yours alone. We cannot explain this disease to anyone that hasn't been through it themselves. So many don't understand our frustrations and despair. As you know CJD is an automatic death sentence with no ray of hope offered. The speed from beginning to end, doesn't even give enough time to digest what is happening. It's like being sucked up into a tornado spinning out of control destroying everything in it's path. When it finally sets you down, you don't know what hit you. You are not alone in this journey. The path you are on now will one day lead you to a "new normal". I miss my mother more with each passing, that said, I am now able to smile when I think of her and am able to see the joy she brought to my life, and most of all the joy that surrounds my life now. My deepest sympathy for your loss. Words are not enough, so I offer my friendship, an ear to listen, and a heart filled with the pain of CJD Hell.