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By Arturo on October 1, 2014 - 12:28pm
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 - 10:51am
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 - 11:56pm
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 - 11:07pm
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 - 6:34pm
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 - 3:41pm
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 - 6:59am
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 - 1:41pm
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 - 12:54pm
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 - 12:40pm
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 - 11:04pm
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 - 10:18pm
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 - 10:17pm
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 - 10:14pm
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.
By Allison Giannotti on September 26, 2014 - 3:29pm
My name is Allison Giannotti and I am a graduate writing student at Columbia University. In 2007, at the age of 57, my aunt lost her battle to sporadic CJD. Although I was just 15 at the time and couldn't grasp the science behind the disease, I saw how it devastated my aunt and family. CJD is a horrific disease with increasing prevalence, yet one that is not well known. My intention is to change that.
I have begun the process of writing a book about CJD; using research, interviews with doctors, personal experience, and the experiences of others, I will tell the untold stories of CJD. But I can't do this alone, and thus, I'm looking for families who wish to share their story with me. I have given my contact information to Lori in the hopes that you could help make this book possible.
I look forward to hearing your stories. Stay strong everyone!,
By Josephine FLORES on September 23, 2014 - 4:20pm
I've noticed that alot of people are having problems with their insurance coverage, Cjd is a disability Compassionate allowance program all U have to do is apply for it through your ssi office or on line r a healh care provider. b
By Carolyn on September 20, 2014 - 11:51pm
I read of your brother in law's diagnosis in another forum and thought I would reach out. My father passed away not quite a month ago from sporadic CJD. I can tell you what we experienced and learned. This is painful and devastating but my family will always be grateful for the time we had with him and for the opportunity to care for him. We were determined to let him die at home and are so pleased to have given him this gift. There is grace to be found in the darkness. If I can be of any assistance from comparing notes to listening I would be happy to do so. Lori can release my contact information.
By Don Prouty on September 16, 2014 - 10:57pm
Sorry to hear that Pam. It does seem like there are little changes every day. The people I have talked to about this disease have all had some similarities but also they all had slightly different ones too. Know that he will always know you are there. My mother had the some of the same symptoms as your husband is having. I lost her 2 years ago to this horrific disease. I would go by every day and see her. She would always say where have you been and I would have just left the room for 5 minutes. She did reach a point that she would just look at me and smile when she reached a point to where she couldn't talk anymore. Thank god for people like the cjd foundation offering support. They are always here and a lot of other people to talk to you about this when you need to that are going thru or have been thru what you are feeling. Prayers are with you and your family.
By Don Prouty on September 16, 2014 - 10:38pm
2 years since my mothers passing from cjd. It was very hard watching her imagine the doctors trying to hurt her,drown her,etc. it seems like yesterday. Diagnosed at the university of Maryland.
By Pam on September 14, 2014 - 9:40am
Patrice, your husband sounds very similar to mine. He was diagnosed June 27, 2014 at the age of 45. He started forgetting things in late March, but had other, more subtle symptoms that started in December, maybe even before that, such as irritability, change in personality, etc. I thought that he may have been depressed, or suffering the effects from insomnia, because he had a very hard time sleeping for over a year before all of this. He is now confused all of the time. He doesn't recognize his own house. Sometimes he has trouble recognizing me or our 2 daughters, but that's pretty rare, for now. He also has maintained his sense of humor, and laughs a lot. He doesn't really know what's happening to him. He's in a wheelchair now too because of imbalance and unsteadiness. He is still at home and receives care from hospice a few days a week with showering, etc. He gets anxious and restless in the evenings. He says he wants to go home, even though we are home. Those times are rough. He can still talk, laugh and joke sometimes, although his speech is getting more difficult to understand. He whispers a lot, or mumbles, so he's hard to hear or understand much of the time, and a lot of what he says is nonsense. I have been trying to find more information about what to expect next. It seems like things change a little bit every day. Good luck to you. This path that we're on is a difficult and painful journey. Prayers for peace and mercy to you and your husband.
By Jenny on September 11, 2014 - 3:53pm
Welcome, Patrice (although I know this is not a welcome place to find yourself). I'm sorry to hear of your husband's suspected diagnosis. There are always similarities and differences amongst all the CJD cases I hear about. Like your husband, my dad's sense of humor was one of the last things to go. We all enjoyed his humor, his laugh and joking around as long as he could, although they got a little "off" from his norm as time went on. My dad passed several days after he lost the ability to talk (and thus, joke). As I tell others on here, please be sure to leave nothing unsaid. Peace to you.
By Daisy on September 10, 2014 - 7:25pm
I have been reading through the sadness,albeit I don't know any of you. Having lost my beautiful and only sister from this cruel disease in jan 2021 , my heart aches with every line I read.I pray I wish and I hope that your outcomes give you time to let your loved ones know how important they are,have been and will continue to live on within you forever.God bless you all .
By Arturo de la Cerda on September 10, 2014 - 12:44pm
Good morning Patrice,
I am sorry to read of your husband's diagnosis. This disease is often regarded as "The great mimicker", by the medical community. My dad passed away twelve years ago. He courageously battled this disease for 4.5 months passing one month after his 48 birthday.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). She will be more than willing to relinquish my contact information. Take care, God bless...
By Patrice West on September 10, 2014 - 10:52am
My husband has had CJD since February 2014 and was initially diagnosed with vascular dementia. He received the cjd diagnosis a month ago. He is in a care facility now. His cognition is almost gone and he is now in a wheelchair because of his unsteady gait. Mostly he talks nonsense. He does still recognize me but usually cannot remember that I have visited with him just the day before. He still has his great sense of humor which is a great comfort to me to still see him laugh and joke around. He knows something has happened to him but he does not know what.
By nora on September 10, 2014 - 3:49am
To Diane, After reading your comment about how many others are in the dormant stage, a walking time bomb, it reminded me of a youtube video by Colm Kelleher titled 'Brain Trust' do check it out I think you may find the answers to some of your questions. There are also many families asking the same questions, many from the USA.
By Diane on September 9, 2014 - 4:09pm
Bobbie - I would love for my sister in law to talk to you. She is in rare need for support for a variety of reasons. I will email Lori (moderator) my email address.
Lori (moderator) 0 can you either message me Bobbie's information, or give her my private info?
Thank you so very, very much.
How can this disease be 1:1 million when so many people I know seem to know someone who has it currently?? How many others are in the dormant stage, a walking time bomb??
By Bobbie on September 8, 2014 - 2:08pm
Thank you for sharing the links to your almost-brother in law's beautifully written articles from his fellow colleagues. My husband has followed his writings for several years and was astonished when we heard of this. It hits home, not only because we are Wisconsin-ites and Badger fans but also because I lost my father a little over 3 years ago to sporadic CJD at the age of 51. I just wanted to offer any 1 on 1 support if you need. I also want to mention Jeanne Drunkenmiller (sp?) who works for the WI state health department who was a very helpful resource specifically. I am in the healthcare field (nurse practitioner) and took care of my father during his last 6 week and am always open to questions!
By Janet on September 7, 2014 - 3:50pm
Jenny, thank you so much. I hear you. Continuing to pray for strength for all victims and loved ones on this message board.
By Arturo on September 7, 2014 - 12:51pm
Sorry to read of your step father's diagnosis. Dealing with the search for a correct diagnosis, you've never wished for a diagnosis of cancer so bad in your life My dad died 12 years ago from sCJD. He battled this monstrous disease courageously for 4.5 months, passing one month after his 48th birthday. This disease creates nightmares for both our loved ones as well as us, just know you are part of a CJD Family that expands the world over. If you would like to keep in touch with me on a one basis, feel free to email Lori at the address above. She will be more than willing to relinquish my contact information. Take care, God bless...