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By tina carlisle on October 9, 2014 - 7:58pm | E-mail
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 - 7:05pm | E-mail
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 - 5:02pm | E-mail
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 - 4:18pm | E-mail
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 - 3:58pm | E-mail
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.
By Arturo on October 9, 2014 - 11:15am | E-mail
I forgot to add, feel free to email Lori (at the address of this page). She will be willing to relinquish my contact information.
By Arturo de la Cerda on October 9, 2014 - 11:08am | E-mail
Sorry to read of dad's diagnosis. The rapid progression of this monster is just unfathomable. My dad passed 12 years ago. He courageously battled this monster inside of him for 4.5 months. Passing one month after his 48th birthday. If you would like to stay in contact on a one-to-one basis. feel free to email Lori (address of this page. Take care, God bless..
By Mariella on October 9, 2014 - 10:27am | E-mail
My mother has passed away on May 16th. I am still sad and angry. How can a strong healthy woman suffer from this horrible disease. My mom was diagnosed on April 14th, 2014 and was taken away from us on May 16th. It was horrible to see her decline so fast. I miss her so much. I am willing o share my story with anyone. I woould also like to hold a walk for for CJD, in NYC. I have no clue how. Any help is greatly appreciated.
My heart is heavy and forever broken. My mom was too young :(
By Stephanie on October 8, 2014 - 5:31pm | E-mail
My father was diagnosed with CJD about on month ago...I guess you don't get a final diagnosis until an autopsy has been performed but he has all the classic signs. I care for him every evening and then go home and cry for my mother and how my father has ended up. I almost think it would be better for him to go...he doesn't talk anymore and we do everything for him. How can something be so fast to take him away within weeks. Just 6 weeks ago we would have great conversation and now he is a blank stare. I'm sure the next few weeks will only get more difficult...so any advice on how to get through it. I will continue to help care for my father but its breaking my heart.
By Arturo on October 7, 2014 - 11:02am | E-mail
I'm sorry to read of your mother's diagnosis. My dad battled Sporadic CJD 12 years. The duration lasted 4.5 months, passing one month after his 48th birthday. Here on the guestbook, we are all to familiar the road you and your family are walking down. Please feel free to repost back here with questions or just to vent. If you would like to stay in contact on a one-to-one basis, please feel free to email Lori (at the address above this page). Lori will be more than willing to relinquish my contact info. Take care, God bless...
By Lisa Bryant on October 6, 2014 - 11:10pm | E-mail
My Mom was diagnosed with CJD a little over a month ago.
By tina carlisle on October 6, 2014 - 12:06pm | E-mail
Allison, I am very interested in sharing our family's story with you. My mother was clinically diagnosed in June of 2011 and passed August 2011. Please feel free to contact Lori for my information. I have consider writing a book, but have no clue as where or how to begin. Our stories need to be told, no doubt about it! This disease is not one in a million. People are dying daily and no one wants this monster to go public. The powers that be want to keep this buried and keep their heads buried in the sand. It is all so frustrating for all that have been devastated by CJD Hell. With this monster it does not end with the death of a loved one, it affects all of us left behind. We are no longer able to give blood, donate organs or tissue and we live in constant fear it could strike again. Please give me a call. I have talked to other family going through this nightmare, it is a great healing experience to share the pain with others. I look forward to hearing from you. Tina
By Joan on October 6, 2014 - 7:36am | E-mail
So sorry for your loss. Seventy nine days is a long time to wait. It must be extremely difficult for you.
I have so many concerns. The cat still sleeps with my brother. I have suggested that there be an autopsy on the cat when it passes but obviously that is not something they are thinking about right now.
This illness is consuming me right now. I just hope they will follow through with the Prion Research Surveillance Center with an autopsy with my sister in law. Also, has anyone witnessed a CJD patient constantly moving their hands like a musical conductor. She had Huntington Corea as a child about 50 years ago and unusual movements were part of that illness.
By Chris on October 5, 2014 - 2:36pm | E-mail
Hi Arturo and Joan,
I too have some concerns about feline CJD. I read those articles about cat transmission in the UK, and then remembered that about 3 years ago, we had a cat named Juan that developed tremors which appeared to be neurological. Shortly thereafter, the cat began behaving strangely in many ways, and then had kidney failure. Because Laura had once kept a petite cat named Punky hydrated for 2 years with subcutaneous hydration, she felt she could do the same with Juan. But Juan, being a very large Maine Coon cat, resisted very energetically. It is quite possible that Laura inadvertently stuck herself with the needle, and that the needle, itself, might have come in contact with Juan's spine or spinal fluid, as the hydration was along that area.
Still waiting for the brain autopsy results (this is day 79)...
By Arturo on October 4, 2014 - 4:54pm | E-mail
Cat's do in fact have Prions. Back when Europe had their BSE or "mad cow" epidemic a cat was fed feed that had grown up bone mill from infected cattle in it. As a result the disease crossed the species barrier and caused FSE or Feline Spongiform Encephalopathy. I highly doubt that this is an environmental factor in contracting CJD. Hope this helps. Take care, God bless...
By Joan on October 4, 2014 - 3:53pm | E-mail
I know this probably seems wildly absurd but has there ever been a study done to see if cats have prions. My sister in law took in a cat years ago that she found and for years it slept in her bed. It is sick and only weighs about 4 pounds. Has a survey ever been done of CJD patients to see if there are any environmental similarities that these patients have in common. I have seen a few posts in this guestbook where people casually mentioned cats. Just searching for answers like everyone else, I guess.
By Arturo on October 1, 2014 - 11:28am | E-mail
I'm sorry to hear of your mom's passing You are right, this disease is a disease is the devil. No one should watch their loved one go through such a monstrous nightmare we call CJD. Having been affected by this disease, you are part of a family that extends the word over. My dad passed from Sporadic CJD 12 years ago. He courageously fought this disease for 4.5 months, passing one month after 48th birthday. Since his passing, at 12, I have been raising advocacy awareness of CJD and other Prion disease. If you would like to keep in touch with a family on a one to one basis, feel free to email Lori (at the address above this page). Take care, God bless...
By Nancy West on October 1, 2014 - 9:51am
My name is Nancy West and I live in Mobile,Al. My mother passed away on August 20th 2014 due to CJD(the DEVIL in my book)! I am wanting any info I can get on it! This Disease is not very known of! And I think it needs to be put out there!
By Pam on September 29, 2014 - 10:56pm | E-mail
I just have to say how much I appreciate this site. Since my husbands symptoms began and we started to suspect CJD, back in April 2014, I have come to this website almost daily. I've been trying to get as much information as possible. I've been trying to anticipate what symptoms might emerge next and to prepare myself for what's to come. I'm so scared and just feel like life is spinning out of control. There are subtle changes everyday. At this point, he is totally confused, most of what he talks about is nonsense. His voice is very soft, he mumbles & whispers most of the time making it hard to hear & understand him. He cannot walk. Transferring him from bed to chair, etc is difficult. Most recently, he has become incontinent of bladder, and just yesterday and today of bowel. I've also started to notice very mild swelling in his legs & feet. As I've mentioned before, his appetite is huge. He eats like a horse, especially sweets. I already miss him so much. He is a brilliant, hard-working, giving man. The only thing that makes this easier is knowing that he is unaware of what is happening to him. At times, he realizes that he's dying, but doesn't seem to be concerned about how or why anymore. He really seems to be at peace with it. Today, he was emotional, and cried a few times, but he was crying about odd things, such as a football game & when telling me that I should call my dad. It's hard to see him like that. In March he was basically his normal self, and now, he's like a stranger who's sick. I can't believe I'm missing him when he's still with me. When he remembers who I am, he is so loving & affectionate, but sometimes he doesn't know me and thinks I'm a hired caregiver. Those moments are difficult. I can't even express how much I hate this disease.
By LindaJPerry on September 29, 2014 - 10:07pm | E-mail
Pam, My husbands appetite has also changed, also. At first he had no appetite and didn't want to eat and lost 50 pounds, but now he is hungry all of the time and wants sweets. Dr. said because he is on seraquil his appetite has increased and now he isn't losing as much weight. If we get a bag of candy, he will eat it in a day or two and he loves cookies. He is still losing weight and eats a lot. If I ate that much I would be gaining.
By Joan Williams on September 29, 2014 - 5:34pm | E-mail
Dear Simone, my sister in law was diagnosed with probable CJD. Her family followed up with a neurologist she had seen previously who brushed it off by saying she had an overactive brain. She rapidly declined and went back to the neurologist that suspected CJD. This was in July. She is now in a nursing home in an end of life unit. It is so rare and until there is an autopsy, we cannot say itfor sure. Every day I try to get over the cavalier attitude of the neurologist who would not even consider the first neurologist's suspicions. Some egos are way to big. Sad. There is so little known about this disease even today. So sorry for your loss. I am sure you miss her everyday.
By Arturo on September 28, 2014 - 2:41pm | E-mail
It is not much of a cover up as is a medical mystery. My dad passed of Sporadic CJD 12 years ago. Because CJD is so rare and mimics other neurodegenerative diseases, a diagnosis of CJD is far from many medical professional mind's. Biologically, the aggressor of the disease is known, but not the method of transmission is still unknown (specifically the Sporadic variant) . Hope this helps. Take care, God bless...
By Simone on September 28, 2014 - 5:59am | E-mail
When my mother was dying of a non-specific brain disease eight years ago I asked one of the medical team if her condition could be something to do with CJD. Their response was to dismiss my idea almost to the point of ridiculing me - why was/is there such a cover up?
By Alison Wang on September 27, 2014 - 12:41pm | E-mail
I came across this website whilst researching about CJD. I would be happy to share my story with you, and I think it's amazing what you are doing, as this is such a rare and devastating illness that so little is known about.
My Mum was diagnosed last week, and I and my family, are absolutely heartbroken. It all started around 3-4 months ago. Mum was always such a bubbly, vivacious lady. She was heavily involved with church, going for walks every week along the seafront. She helped my Dad to run a business together and would do all of his accounts and paperwork, never making a single mistake in the 30- odd years they have run the business.
It all started one day when she said she had banged her leg. After this, she was limping a bit and slowly it became more and more difficult for her to walk. Shortly afterwards, she started to develop memory problems. For example, saying that she had done something when she hadn't , and doing the accounts wrong. This gradually got worse, she became more and more withdrawn and tired. Barely wanting to go out which was strange as she was normally such a sociable person.
So Dad takes her to see the doctor. Initially they think it was a TIA (mini stroke) but that she would be fine with a bit of rest. 2 weeks later, her mobility rapidly declines and her memory got worse. For example, she started to think that I was still at school ( I am 34 years old). 1 week later, she collapses and is immediately taken to hospital. The run a number of tests, and initially again they think it is a stroke as she has all the classic symptoms- the slurred speech, memory problems, mobility problems etc. However, she then has an MRI & CT scan, both of which show that this is not the case. The doctors are pretty baffled so she has a lumbar puncture, after which she is diagnosed with this terrible condition.
Since the diagnosis, she has rapidly declined. She is completely bedridden now, unable to do anything for herself. She is also constantly drifting in and out of consciousness, and I know it is only a matter of time before the disease takes her away from us for good. It is absolutely heartbreaking to see, and the worst thing about this illness is that as it is so rare, no one know how it is caused or how to treat it. For now, all we can hope is that she is as comfortable as she can be and she is not in pain. I try to go to see her as often as I can, even if she is only awake for 5 minutes, she at least knows that I am there for her, the way that she has been there for me my whole life.
Hopefully one day there will be some answers, to decrease the amount of people and their families who have to go through a similar fate.
By Arturo on September 27, 2014 - 11:54am | E-mail
That is great to read that you, and others, have taken the initiative to document their experiences with CJD. My dad passed 12 years ago. He fought this monstrous disease for 4.5 months, passing one month after his 48th birthday. I too have taken the initiative to spread advocacy and awareness of CJD and other Prion diseases. I would like to be a part of your book. Lori has my contact information as well and she will be more than willing to release my contact information. Take care, God bless..
By Arturo on September 27, 2014 - 11:40am | E-mail
From what I remember my mom telling me my dad's appetite decreased as well as while he was sick, except when it came to sweets as well. Take care, God bless...
By catherine melancon on September 26, 2014 - 10:04pm | E-mail
Prayers to all who are suffering either by watching their loved ones with this dreadful disease, or for those in the throes of the disease.
By Pam on September 26, 2014 - 9:18pm | E-mail
Has anyone else's loved one experienced a significant change in appetite and eating habits? My husband initially had a decreased appetite and had lost almost 20 pounds. Since then, he has developed a huge sweet tooth, and a voracious appetite. He's gained quite a bit of weight over the last few months. Up until now, he was always a very health conscious person, and didn't eat many sweets or junk food items, amd exercised regularly. Now, he eats huge amounts of food, mostly sweets & junk food. Just wondering if anyone else has had this experience. My husband is 45 years old and was diagnosed on June 27, 2014.
By lizz Swanson on September 26, 2014 - 9:17pm | E-mail
I lost my brother this last may. ..so many of these posts all reflect the same heartache and sadness..I find it difficult to understand how so this disease is so rare..yet so many posts here..
By Bernice Money on September 26, 2014 - 9:14pm | E-mail
This will forever be a special time of the year for me. It was the beginning of the loss of two people I never thought I could live without. I was told CJD was the name of the disease that started to run through my mother's body beginning in September gradually taking her away little by little until February of 2012.After she left my father her husband of 62 years rapidly declined in the last stages of Multiple Myleoma. I'll never know exactly what happen to him other than the fact there was a fire at the house that we grew up in. My father's body was there but, my father had left the building. He was gone to be with mom. I don't mind listening to others as they go through this experience. So many questions and no time to figure them out.