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By Lynn Lofgren on April 19, 2014 - 5:49pm
Tom, I am so sorry for your loss. I lost my husband of 40+ yrs to Sporadic Fatal Insomnia, a form of CJD 3 1/2 yrs ago. You have found a good place to get information and I know the days ahead will be difficult. It is a hard adjustment to make to live alone and dealing with the monster we know as cjd. Please stay in touch either thru this website or on FaceBook with the CJD Family.
By Arturo de la Cerda on April 19, 2014 - 1:02pm
Good Morning Tom,
We are sorry you you had to walk down the CJD road. My dad passed away from sCJD 12 years ago. He battled this monster courageously for 4.5 months. He passed one month after his 50th birthday. If you would like to keep in touch with someone on a one to one basis, please feel free to email Lori (her email address is on top of the page). Take care, God bless...
By Tom Curley on April 18, 2014 - 8:57pm
My Wife of 44 years was diagnoised with CJD in February. My wife Dolly passed away April 14th 2014
By Marian on April 10, 2014 - 4:09pm
To Lynn Lofgren
Thank you for your kind words. Even though we found out it's not CJD he still has all the "other" symptoms and memory loss. He has also been violent a few times as well. I'm glad to know I'm not alone and can still share, cry, laugh and scream if I want to.
By Marian on April 10, 2014 - 4:05pm
Well I just found out this morning that my husband doesn't have CJD. The Dr. in Italy confirmed it when he looked at his MRI. He has some kind of disease in his brain, which they still don't know what it is. His brain is dying and they say there is no treatment for whatever the heck it is. I'm happy it's not CJD, but am still sad, confused and worried about him. He is declining everyday. I still want to be a part of this family and give support to all of you because you have been a help to me. God bless you all!!!
By LJPerry on April 9, 2014 - 11:26pm
To Lynn Lofgren
Thanks so much for your input about your husband. Sometimes I feel all alone in my problem but to know that others understand helps so much. I thank God that my husband has remained pleasant most of the time as it would be awful to deal with otherwise. It seems that they leave before they are gone. Thanks again.
By Lynn Lofgren on April 9, 2014 - 4:40pm
To Marion and LJPerry - we had the same issues with my husband, difficulty dressing, memory loss, he forgot how to use the TV remote (that seems so impossible for a man, LOL). We spent 6 months trying to figure out what was wrong with Jim. We were told he had a small stroke, sleep apnea, thyroid issues, mental instability but in the end it turned out to be CJD. We received diagnosis on 11/11/2009. Jim continued to worsen with difficulty walking and riding in a car, eating changes, eyesight difficulty and muscle jerking. He began to hallucinate and believed someone was in our bathroom all the time. He also forgot my name and who I was for a while but for some reason that came back to him but he never spoke my name again. He became very difficult to deal with and combative to the point that I had to place him in a nursing home. He lived there for 5 months before passing away 10/21/10. It was a long and very trying 11 months from diagnosis to death. Many people only have weeks or days from diagnosis, so often I feel lucky to have had the time to spend with Jim but then again it was tough to watch a vibrant, happy, healthy man die a little every day for a year. I hope you will both find the strength and help you will need for your journey through this ordeal that lays ahead for you. The CJD Foundation is a wonderful resource, use them.
Darla and Melissa - your references to NE caught me off guard. We lived in Omaha at the time my husband became ill and that is where we got a diagnosis. We moved to Dallas TX to be with our daughter during his illness so that I had the help that would be necessary. We had a private physician and neurologist that gave our final diagnosis but that is were it ended. Not much more they could do anyway.
Feel free to contact Lori at CJD Foundation for my phone number and or email address. I will respond as quickly as possible. I will be out of touch for a few days around May 12 as I am making the permanent move to the Dallas area to be near our daughter. I will check email as often as possible.
By Dara Placke on April 7, 2014 - 8:08am
I am so sorry to read about your father. My husband passed from sCJD 7/15/11. I was startled to see of the referral to UNMC. I assume you are from NE as we are. Please contact Lori for my email address if you would like to contact me further. I know all too well the devastation this disease has caused. Like your father, my husband was gone within a couple of weeks after entering the hospital. I agree with Arturo on the statistic being miscalculated. Everyday, I come out to this site and see new postings and it just breaks my heart. I am so sorry for everyone!
By Arturo de la Cerda on April 6, 2014 - 12:22pm
I'm sorry to read of your dad's passing. My dad passed from sCJD 12 years ago after a 4.5 month battle. He passed one month after his 50th birthday. As for the 1 in 1,000,000 statistic is unfortunately miscalculated as well, even some of the prominent researchers believe in this as well. Feel free to ask lori for my email addreess. Take care, God bless...
By Melissa B on April 6, 2014 - 9:40am
We lost a wonderful man to CJD January 15th 2014. My father was the greatest man I've ever known. Everybody loved him! He was fun, outgoing, loved life, and worked hard! He was the best father to my brother and I , grandpa to his 7 grandchildren, and husband to my mom of 45 yrs! We had many many memories camping, fishing, boating, golfing, and sport events w the grandkids. It's extremely hard to accept losing him to such a rare and awful disease. He's been healthy his entire life and in December we noticed a lot confusion and loss of balance. We new something wasn't right...maybe he had a stroke? His last day of work at Dutton Lainson Co after 45 years was December 13. He wanted to continue but was having too much memory loss. After doing some testing here the neurologist referred him to Omaha UNMC January 1. After 5-6 days and more testing, the drs came up with the diagnosis of CJD and said it was a matter if time...less than a week. We were devastated that we were going to lose him! It was progressing much more rapidly then they had ever seen,. Every day he deteriorated further. Initially he could kind of communicate with us. Often he couldn't get the words out. His appetite was great. Towards the end, he was not able to swallow well, he started choking while eating. This broke my heart...I knew it was the end. The last couple days he fell into a coma. He looked good and seemed very peaceful. He passed away on Jan 15th. I'm so very thankful the family was all able to be there to love and hold him and tell him we were all going to be Ok. Seeing his grand kids break down was sooo heartbreaking!! Grandpa was so involved with their lives and loved them so much! To let my dad go is like losing a big piece of my heart. He was my ROCK! And at age 67 it just doesn't seem quite fair. I just wish I knew how he would have gotten something like this?! It seems since we have lost dad we have heard from many people that they know someone who has passed from CJD. I just wonder if it's as rare as statistics show why are we hearing so much about it? I pray they find a cure for this horrible disease!!!! My email is available if anyone would like to share their story with me.
By nora z. on March 30, 2014 - 4:20pm
Hello everyone just having memories about my brother and missing him dearly, still feeling the pain over his loss. Its going on three years but still in great pain. My prayers are with each and everyone who is dealing with this diesese.
By Ellen Festa on March 28, 2014 - 10:52am
Happy Birthday, Tony. It would have been your 65th. Love you.
By lovellholiday on March 27, 2014 - 11:46am
Has anybody heard of a couple or close friends both getting cjd? Me, a friend of mine and my current gilfriend all have been having these symptoms, with her just admitting to severe brain fog bothering her and muscle twitches and jerks forthe past 4-5 years
By marian on March 25, 2014 - 9:59pm
Thank you for making me like I'm not alone. That you and I both have husbands that have been going through this for so long. I can't believe how similar they both are with their memory loss. If you would like to e-mail me please get a hold of Lori for my info. I will keep you and your husband in my prayers.
By marian on March 25, 2014 - 9:55pm
I am so sorry for what you are going through. I want you to know that I will be praying for you.
By lovellholiday on March 25, 2014 - 12:51am
Hello all! I am a 20 year old african american male from SC currently dealing with debilitating muscle twitches
Stiffness, memory loss, and serious brain fog
That's been progressively getting worse.
Recently I've started getting words switches up easily, and tiwtching has started on the sides of myhead
Please pray for me as I fight to find out if it's cjd as I've developed these issues slowly progressively
Over the past 2 years.
By LJPerry on March 24, 2014 - 2:01am
I am so glad to hear from someone who is going through what I am. My husband has the same symptoms as your husband. He spends so much time looking for things and it is getting so he doesn't remember what he is looking for. He doesn't remember how to work our shower and has to be pointed in the right direction for the kitchen, bath, stairs, etc. He takes it well when I have to help him, which is getting almost constant now with everything. He can still dress himself but gets things on backwards some and sometimes tries to put on my tops. It seems that his brain doesn't work with his eyes. It is so very sad.
It took several months to find out what was wrong with him but all tests have shown CJD and several specialists have all agreed. We have an appointment at Washington University in St. Louis in May and the doctor there is more familiar with the disease. She has already confirmed the results. Now we are just hoping it is not the genetic kind. Thanks for the prayers and I will remember you in my prayers also. I can sure feel for you!
By Marian on March 23, 2014 - 4:38pm
I have been dealing with the same thing with my husband. His memory loss started in Oct. of 2012. He's had all the symptoms of CJD but no confirmation with the spinal fluid, although other tests show abnormalities as does his MRI. I feel as though it's been a long time with him as well. We were told last Dec. 2013 that he could possibly have CJD. His memory gets worse everyday. He gets confused with dressing, not knowing how to turn on the TV, I have to help him get clothes on the right way etc... I understand what your going through and I'm just as confused. Because when I read other people's posts and how fast their loved ones have past I wonder if Ed has this or not. All I know I am glad to be a part of this foundation and the CJD family site on facebook. It helps to be able to talk about this awful disease with others who have gone through this. Praying for strength for you.
By nora on March 23, 2014 - 3:35pm
Sadly you are not alone there are many victims of CJD be it sCJD, vCJD, nvCJD, iCJD, especially here in the UK. You mention Scotland, are you aware of Grant Goodwin aged 30 from Glasgow who died from nvCJD a couple of years ago? I beleive Grant was exposed to BSE in the 80's or 90's. It seems that CJD strikes people at almost any age, how are so many being infected with this disease, do you know what form your mother had? If you would like to be in touch with other families for support a very good starting point is the justice4andy.com website also you might like to join the CJD awareness facebook site where you can be in contact with many families from around the world affecetd by CJD, members joining daily. I hope this helps.
By Andrew on March 21, 2014 - 8:59pm
I've been searching for a long time to hear other people in my position or worse, I't,'s been over two years since I lost my mum to CJD and I don't think I accept it yet but I'm trying to and don't let it affect my life. I'm married with two beautiful girls I have a small business which I don't know how it's survived.
We have had some support from our NHS in Scotland but I know the funding is limited due to the rareness of the disease however it hasn't really helped me personally. I'm glad to have found this website maybe I've found a place where I can keep up to date with this awful disease.
I lost my mum aged 56 in November 2011. I new she was Ill but got told she had an ear infection, I was in the children's hospital with my 6 week old when I found out (she great 3 in August ) I've been to information day and tried for information since them but Internet seems my only source we are (me and my family) no more informed and would love to be kept updated on any developments .
"Please contact Lori for my email address"
By Ana Charles on March 20, 2014 - 11:24am
My family carries the disease and I'd like to help as a volunteer in the investigations you're doing. I'd be happy to give blood if required, and/or be interviewed by cientists regarding the deseased relatives behaviour prior to the desease being diagnosed, or anything else.
My grandfather died at 49; my mother, one of her sisters and a brother died as well (40% of brothers and sisters. Mum and aunt died at 49 and their brother at 75. Unfortunately one of my brothers passed away in November 2013 at 66 and another one in August 1993, also 49 years old.(33.33% of offspings so far).
By Arturo on March 16, 2014 - 11:35am
I am sorry to read of your mom's diagnosis. Unfortunately CJD is cruel and relentless disease. My dad passed away from this disease 11 years ago. He battled Sporadic CJD for 4.5 months, passing 1 month after his 50th birthday. You are now part of en elite family that expands the world over. Please do not hesitate it post back with any questions or concerns you may have. Take care, God bless...
By 余澍宪 on March 16, 2014 - 3:05am
My mother and the onset of September 15 this year so far , quick access to dementia, life can not take care of themselves . Shanghai Huashan Hospital and Beijing Xuanwu
After reading specialist hospital in the mother 's condition, highly suspected CJD, unable to get effective help and treatment.
Now I'm at home taking care of her , taking chlorpromazine hydrochloride tablets and tinidazole tablets. Now her mother often awake and sleep
Speak in vague , but can not hear. Twice , my mother in dyspnea when suddenly a clear call my name , eyes
Me and told me she was going to die soon .
My father had passed away , and now only my mother and I live together, and now my mother 's illness can not get effective treatment, see
She was losing weight, I'm really very sad.
Pray for your help in the next likely scenario , hoping to get the exact diagnosis , and are willing to accept for a new experiment
Drug rehabilitation for mothers to bring hope .
Really hoping to get your help , thanks!
Annex is the hospital 's information, I turned into a photo , you can view, thank you.
By Michael on March 14, 2014 - 10:50am
Two years is a long time. However, I have been dealing with this illness in my family for many years. I have lost my brother and mother to genetic cjd over the last 20 years. Both died within 4-6 months after first symptoms. Recently , I lost a cousin after an 18 month battle. There is no recipe for the symptoms. As I stated, I have been reading and learning for 20 years. Every time I read a new journal entry, I learn something new.
Back to your question, my mom passed away in the hospital and my brother and cousin were cared for by family members at home. Neither were ever placed for care. It is really an individual choice based on symptoms, support and resources. There is no right or wrong!
Michael, St. Louis, MO
By LJPerry on March 13, 2014 - 11:15pm
To Jennifer Gill. I noticed that you stated that you went through the journey with him for 2-3 years and it has been almost 2 years for my husband. The doctors said it is unusual for it to last that long and I guess I just need reassurance as it is getting worse by the week. If anyone knows of a support group in central Illinois, I would appreciate knowing about it. I feel so alone and really don't remember when his personality left him. Did you have to put your husband in a healthcare facility?
By Bryan sprankle on March 13, 2014 - 1:44am
Hello, my father passed away from cjd in 2007 and I would like to become a part of this foundation to help raise awareness of this debilitating and scary disease, in hopes that one day a cure will be found.thank you and God bless all of you
By Jennifer Gill on March 11, 2014 - 9:39am
Last night, the CJD Foundation hosted a support group in NYC. I would like to thank the foundation for making this possible. My husband passed away on July-12-2013 and although I can write about my feelings and my journey with him during the past 2 - 3 years, it is very hard for me to talk about it. Everything seems so 'chaotic' in my head. No one seemed to understand, although everyone said they did. Last night, however, was so easy. I felt as though everyone there really did understand how I felt and I really did understand how they felt. Thank you, Florence for your efforts. This terrible disease robs us of so much more than taking our loved ones away....so much more. Thank you for bringing us together. God Bless you.
By nora on March 5, 2014 - 3:55pm
I would like to post this story from a lady who lost her husband to CJD it may help others in the same situation,
By nora on March 3, 2014 - 11:55am
To LJPerry, I am so sorry to read that your dear husband has CJD, sadly he is not alone, more and more people are being diagnosed with this dreadful diseae, if you go on facebook there is a very supportive group 'Creutzfeltd Jakob Disease Awareness Group' there are nearly 800 members most if not all have been directly affected by CJD/vCJD, the numbers are rising daily, I am sure you will find much support there.
By LJPerry on March 3, 2014 - 12:33am
My husband has been diagnosed with CJD after 18 months of tests. The neurologist thought he had a different form of dementia because he doesn't have all of the symptoms of CJD and he is still alive. My husband remembers people and things that have happened but he gets mixed up in our home and cant't find everyday items like silverware, his clothes, the coffee pot; however, he still can fix coffee if I help him find the coffee pot and the coffee. He gets mixed up if he goes outside and then cant't find the house and doesn't seem to know that anything is wrong. It is so sad and breaks my heart to see him this way and I know it will get much worse but I am taking a day at a time. Wish there was a support group for me and my children and grandchildren. I feel bad for anyone who has to go through this.