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By Carrie Singer on July 25, 2014 - 7:15pm
I am so sorry for your loss of Dolly. He had an older sister by that name, how ironic. I live in WV, near Washington DC. My husband was 74, but we still kayaked skied and hiked. He was a brilliant physicist and literally lost his mind and life in 2 1/2 months. It hit his speech center first, and every day I could notice some words he had lost from the previous day. For example, first it was the name of one of our cats, then it was all the cats names, then the word cat, then all words, all within a few weeks. I donated his brain to prion disease center and they confirmed CJD, but a strange kind related to scrappie. It was first diagnosed at Hopkins from MRI, but even the special neurologists in Winchester(closest medical center) diagnosed him as having had a stroke with aphasia. His correct diagnosis was about 3 weeks before departing.
Was the conference helpful to people or did it just leave more questions?
By Thoma F. Curley on July 25, 2014 - 6:42pm
Dr. Johnny Young, yes I would like for my wife's case Dolly M. Curley age 64 years. A young 64, a Registered Nurse, Legal Nurse, Critical Care Nurse still working for Simione Health Care out of Boston, Mass. This would be an interesting case because of other factors involved. Went on a vacation to Cauroco one night she woke up about 3 in the morning complaining about something crawling in her ear. We came home she went to ear nose and throat doctor who stated she did have a hole in her ear drum from some Bug.On February 5 she called me left message stating she could not find her phone numbers on her iPhone that was a Wednesday she came home Friday from a job in south Carolina. I had her in 4 Hospitals University of Penna. Hospital in Trenton New Jersey. Atlantic Care in New Jersey and Shore memorial in New Jersey. They all believed Dolly had a stroke she lost mobility on her right side and could not talk. I'm bitter Doctor no one can explain how she contracted the Monster. My email is enclosed would like you to contact me. This is a unique case and Yes my wife had EEG's Cat scan MRI XRays before diagnosis. and had them in 4 Hospitals and finally a spinal tap.
By Nicole on July 25, 2014 - 5:03pm
hi everybody I got question about CJD diagnosis to those who have dealt with CJD personally. how was ur loved one diagnosed with this disease? was the diagnosis made by brain mri? did they see clear changes early on? was it EEG reading? how was the final diagnosis made?
By Tom Curley on July 25, 2014 - 1:37pm
Carrie, sorry to hear about your husband how old was he ? and what State do you live in ? My wife Dolly passed away from CJD April 14 2014. You questions are the same as I have with my wife. My wife was 64 years young. I still say it's in the beef. It's happening more and more no one can tell me different. They call it sporatic that's just a word they made up. Then how can they explain the clusters that occur ? I went to the conference in Washington. Did your husbands death certificate say CJD on it ? You are in my prayers. Tom
By Carrie Singer on July 25, 2014 - 1:25pm
My dear husband Dave died of the disease April 7, 2013. I still grope with the loneliness. I spend much of my time wondering how a brilliant healthy man whose parents lived into their 90's, who never had surgery, and no known medical conditions, could "catch" such a dreadful disease and waste away in such a horrible manner. I had hoped to attend the DC conference this year, but was unable to face it. Nobody seems to understand what we and they go through.
Please contact Lori for my email
By Tom Curley on July 25, 2014 - 8:01am
Judy, thanks for replying same thing happened to me with the phone my Wife called me Feb 5 2014 she called crying and confused saying she could not find the phone numbers on her phone. I kept the message it wasn't the phone it was CJD I kept the message also. April 14, 2014 Dolly passed 2 and a half months. Take care you all are in my prayers always.. Tom
By Judy on July 25, 2014 - 12:15am
Decided to check back in ,I feel compelled to see if there is any new news. Tom , we are from Virginia. Daisy , you said your sister fell and hit her head , my daughter also fell during an ice storm we had last winter and hit her head . Her husband and kids said it was anything big , but when you start thinking back it just makes you wonder !! Those of you that have gone through this or is going through this surely must know how sad and helpless we all feel . I would like to just cradle her in my arms and rock her and never let go . Your children are not suppose to leave this earth before us parents , it's just not right !! I have a message on my answering machine from her ,it was Mother's Day and I had gone somewhere , she called twice and I have listened to them twice since she has gotten so ill, I would give anything to hear her voice again .
By Daisy on July 24, 2014 - 11:16am
I check this site regularly and feel saddened with every message.For those of you who have recently lost or have had the dreadful diagnosis handed to your families...I am so, so sorry.I lost my dear sister seven weeks from diagnosis in January 2012.I am a registered nurse and constantly try and source any documentation on prion diseases.The CJD Conference s in October in Melbourne this year,I am hoping for any new progress on either early detection, and of course the dream of a cure.I am particularly interested to see of any collective data correlates with head injuries,as my sister fell and hit her head, resulting in a small bleed....she never really recovered...and was diagnosed approx seven months later...sort f makes me wonder if it woke the dormant prions...her autopsy was sporadic CJD, definite....the saddest, insidious disease I have ever had to deal with.The incubation period can be up to 50 years, so I guess many people die with it, and not from it. Sporadic anything is so hard to comprehend,but as the neurologist said to us when she was diagnosed" why do children get leukaemia ? He said they don't catch it, it can't be caught, so that Left me feeling sad, so rare, so rapid, and so final.There are very few disease these days that medicine simply cannot offer anything to slow the progression,albeit the outcome will be terminal.Again, I wish you all the best, all the strength and hope the time you have with your loved ones is precious
My thoughts and prayers are with you all, I feel so far away as I haven't seen an australian entry as yet.....again, god bless you all
By John on July 24, 2014 - 9:40am
Hi, my name is John and my brother Todd and sister Lisa have already posted about my mother Nancy. I finally feel like sharing with everyone after it has been 26 days since my mother has passed away. I want to say I miss and love my mom, she did not deserve this horrible end. The pain of loss and the feeling of helplessness is truly unbearable. I spent every night with her for two weeks back in early June before she was bedridden and still able to move around with some help.
Those two weeks were the closest I ever felt to my mom. The memories I have with her I will cherish for the rest of my life. I have two I want to share specifically;
First, during one of her late night episodes she got upset and felt someone was trying to hurt her kitties so I followed her slowly down the hallway to help her calm down. She stopped and turned around and asked me, "Are the kitties safe?" I told her that they were and no one was going to hurt them. She looked me in the eyes and for an instant it seemed she understood everything I had just said. She put her arms out, hugged me and started to cry on my shoulder. (My mom had never done anything like this with me.) She told me that she loved me and I was a good boy. I couldn't help but cry myself.
The second story was during another night when I had dozed off on the floor next to her, I all of sudden woke up. The first thought was if she had wandered off and fell down, injuring herself. But everything was OK, she moved around me and was putting her blanket over me. She said "Don't want my little boy to get cold." Even with this horrible disease, Mommy was still there, somewhere making sure her baby was OK.
I miss her so much and wanted to express how much love I felt from her and how important those "moments" can be for each of us. I love you Mom!
By nora on July 24, 2014 - 2:38am
This is from the BBC news website today about CJD:
By Arturo de la Cerda on July 23, 2014 - 12:03pm
I am so sorry to read of your daughters diagnosis. The rarity of this disease is unfortunately underestimated. My dad passed from sCJD 12 years ago. You and your family will be in my prayers. Take care, God bless...
By Tom on July 23, 2014 - 6:24am
Judy, I'm sorry to hear about your daughter. My wife Dolly just passed on April 14 2014 from this disease. I also was at the conference. I still don't know how my wife contracted the disease. We are from New Jersey and Delaware. What State are you from. They say this is rare but I don't see it. It's growing more and more no matter what they say. your daughter is in my prayers.
By Judy on July 22, 2014 - 9:59pm
Where do you start ? Why ?? My daughter has contracted this horrible disease and she is only 37. She has a wonderful husband and 2 beautiful teenage sons. I just can't get a grip on this. My son-in-law and my brother-in-law and sister all went to the convention in DC just a couple of weeks ago. I feel as if her children are stronger and braver than me. I just lost my husband 2 1/2 years ago, this is just too much . I guess like every other family member that has contracted CJD , what is this , where did it come from and how do we do we go about doing something ? My son -in-law , has been so active in his research , but so little is known. I feel so helpless .
By Arturo de la Cerda on July 22, 2014 - 9:42pm
Sorry to read of your sister in-law's diagnosis. This monstrous disease is truly mind blowing for us. My dad passed from sCJD 12 years ago. He courageously fought this monster for 4.5 months, he passed one month after his 48th birthday. If you would like to keep in touch with a family on a one to one basis, please feel free to email Lori at the address above. She will be more than willing to relinquish my contact information. Take care, God bless...
By Denise on July 22, 2014 - 2:41pm
My 59 year old sister in law, a nurse, was diagnosed with CJD, probably sporadic, one week ago today. She was admitted to a local hospital on June 18 and discharged two days later with a diagnosis of a mild stroke. She had been exhibiting obvious signs of speech impairment and confusion for several days earlier, but tried to keep it hidden. Because she was over weight, had high blood pressure and was diabetic, no one initially questioned the diagnosis. Looking back she probably had some of the psychological symptoms much earlier. Being single with no children we took her into our home until we could get her into a rehab facility. Thanks to managed healthcare, it took us 10 days to get her admitted to an acute Rehab facility, while we continued to observe rapid decline and asked for another MRI, saying something else was happening. Dystopia began to set in and global aphasia worsened. She became incontinent and began having difficulty keeping down her food. The rehab personnel were baffled and ordered medical tests looking for infection noting they were also experiencing the declines we were reporting and would not be able to keep her in rehab if she wasn't meeting her therapy goals. The neurologist ordered a CAT scan before he finally agreed to another MRI. We finally told him if he couldn't help, to do what he needed to do to get her into IU medical center, Methodist Hospital in Indianapolis. She was admitted on July 13th and they diagnosis her with CJD two days later. Her symptoms and progression were actually quite classic for this oft misdiagnosed disease. By Thursday of last week she could no longer swallow liquids. She is now in a nursing home with Hospice care and has days to a few weeks before she passes. We are trying to keep her comfortable. The 10 days in our home now seems like a gift, as intuitively we did the right things providing for her care and comfort, seeking hope and joy each day. Had we not forced the issue for an answer with the treating neurologist, we probably never would have known what caused her rapid decline and would have forever questioned what more we could have done. I am thankful for all the information on the internet and my heart goes out to everyone who has been touched by this cruel prion disease. IU has asked for a brain tissue sample donation which the family has agreed to provide upon her passing in hopes what they learn will help others. Thank you for allowing me to share our experience.
By Kevin on July 21, 2014 - 7:48am
Hey guys - can someone please tell me, is it possible to get sCJD (Sporadic form of CJD) when you are in your early 20's? I am not talking about vCJD (variant CJD), I know you can get that in your early 20's, but I'm talking about the SPROADIC form, that usually occurs in old people. Is it possible for someone who is like 21, 22, 23 or 24 years old to get that?
By Deanne on July 21, 2014 - 2:17am
Hi everyone. So sorry to hear about your losses. I lost my mom last night to sporadic CJD. It has been a long 3 months. She was admitted to the hospital in April right after Easter with confusion and within a week she couldn't remember our names and barely recognized us. Then she had hallucinations and slowly forgot how to talk and do daily activities. Within 3 weeks she was bed ridden and had to be medicated at all times. Within a month she had a feeding tube. She couldn't swallow or talk or communicate for the last month. We just visited and talked to her. No one should die like this. My heart goes out to everyone. I pray they find a cure for this horrible disease. My mom was only 66 years old.
By Arturo de la Cerda on July 20, 2014 - 7:00pm
I am so sorry to read of your mom's diagnosis. This disease ravagous our loved one's in such heart wrenching ways It is truly unfathomable until the end. You and your mom are now apart of a family that will walk with you down this dark road. My dad passed from sCJD 12 years ago. He courageously fought this disease for 4.5 months, passing one month after his 48th birthday. If you would like to keep in contact with a family on a one to one basis, please feel free to email Lori. She will be more than willing to relinquish my contact info.Take care, God bless...
By Aziza Willey on July 19, 2014 - 11:18pm
Hi everyone. My mom is 60 yrs old and has recently been "diagnosed" with this disease. I saw my aunt and uncle pass away from something like thing back in 1988 and 1990 and just hope it wasn't this. I don't understand. I took my mom a present for Mothers Day and she was walking and talking. She repeated a story to me that day and dismissed it as her being stressed out. Well 2 weeks later, she could only walk with a walker and started having psychotic episodes. Here we are 2 months later. My mom is in a hospital, can't walk or talk. Doctors are recommending taking her IV out since nothing will cure this disease. This experience is unreal and too quick to process. It's sad. After reading stories on here, I know I'm not alone, for what it's worth thank you. Please keep our family in your prayers. I feel like the worst is yet to come. It is udder sadness.
By nora on July 18, 2014 - 5:51pm
Great to see Lori Jo Marcus Nusbaum from the CJD foundation raising awareness on CJD Awareness Facebook Group, the more CJD groups support each other the more awareness of this disease we can raise around the world. Thank you Lori for supporting CJD Awareness Facebook.
By Michael on July 17, 2014 - 2:24pm
I have lost my mom, brother and a 1st cousin to Genetic CJD. I have done a lot of family research and history. For 3 generations I suspect about 8 or 9 cases.
If you want to talk about his, give the office a call and ask for Mike Fitzgerald's contact information.
Every time that I see a case of Genetic CJD posted, I wonder if they are somehow related to me. There are numerous great uncle's and aunts that I have no idea about their extended families. I do know that my great grandmother(my maternal grandpa's mom) "went insane". I also know that 2 of my grandpa's siblings most likely had CJD and died from this disease. There are 3 of my grandpa's siblings that I know nothing about related to the last 2 generations.
Michael St. Louis
By Brent on July 17, 2014 - 10:33am
Good news guys! My 57 year old dad does NOT have CJD! He just had his MRI read by some of the best prion (CJD) specialists in the country, they said its absolutely, positively not CJD. Now we're thinking it something autoimmune... but hey at least its reversible then. Wish us good luck on finding the problems of his mental decline and involuntary movements
By Bonni Chan on July 16, 2014 - 4:19pm
I just found out today that my dad (84) has been diagnosed with Creutzfeldt Jakob Disease. I live in Minnesota and my parents are in Florida. My only sibling lives in Wyoming.
I've spent the last several hours reading online about this serious and very sad disease, and simply feel numb and helpless. My brother is in flight now to go there and work with the doctors, etc. and to make some major life decisions regarding our father's future care as well as for my mother, who is well into her years (almost 89) with her own issues (memory loss, etc).
I have no idea as to what I can do from so far away...I just feel overwhelmed and helpless. Does anyone have any suggestions regarding my situation? If so, please contact email@example.com for my email address please. Thank you so very much!
By Jeannie on July 15, 2014 - 9:14pm
Mark - my brother died September 25, 2014 of sCJD. Or so they say. He had 2 surgeries for aortic aneurysms. His last surgery he was given 43 pints of blood. I can't help but think that it isn't connected to either the surgery or the blood. This was a monster and I will never forget the fast downward spiral that occurred between the time he was diagnosed (June) to his death in September. It was pure hell to watch and was the worse thing I've ever witnessed. He was 57 when he passed and left 5 sons.
By Angela on July 15, 2014 - 11:19am
Hi, my name is Angela. I lost my grandpa to this aweful disease in 1983. My brother was just diagnosed with it 3 weeks ago. He is only 45 married with 2 beautiful daughters, a great job a beautiful house. He had everything going for him til now. His life came to a sudden standstill recently. He started forgetting things he ate the night before. He went to his doctor they did numerous tests. No answers. But the mri and eeg came back with brain abnormalities. After some thinking we thought of CJD. Then my mom told his wife that mentioned it to his doctor. my brother went to Mayo Clinic for more tests that confirmed our worst fear. CJD They gave him 6 months to 2 years to live. It is so hard to watch a perfectly healthy strong man become so tired, forgetful and totally lose his ability to walk on his own. I am looking for any support I can get. This is my baby brother I always protected him but I can't now. He is already some what different but he is still there at times too. I hate this disease and to have to see it twice is just aweful.
By Tracy on July 14, 2014 - 2:44pm
Sorry I mispelled this horrible disease in my post............it makes me so angry that I cannot even spell three initials correctly.
By Trac on July 14, 2014 - 2:42pm
I am a cousin of Natalie's who posted on July 11. I have to say that I do not wish this disease on my worst enemy. To visit my 45 hard working cousin, a mother of two beautiful girls in the hospital while she was having her EEG done and thinking that they were going to find out what was wrong and life would continue on to visiting her at home and her being diagnosed with CDJ is just mind blowing. How your life can be turned upside down instantly. For me to stop and think of the things that we as women look foward to in life to cherish with our children and she will not be able to do that makes me so sad and brings me to tears.........we will not be able to grow old together as cousin's.....her and her sisters are like my sisters as I am an only child. I am cherishing each and every minute that I get to see her and we are making memories with her that we will hold close to our hearts for the rest of our lifetime. I keep asking God, why do you take the good people. My heart is so heavy and days I feel numb. I try to stay composed as much as possible around her and make her laugh and smile. I dread the day that I visit and she does not know who I am or who my aunt/uncle is or her sisters or her beautiful daughters. May the love of our family help us through this horrible time.
By cynthia on July 14, 2014 - 12:08pm
My husband was diagnosed with CJD late May of this year. I would like to care for him at home, but he is now unable to remember he needs his walker for assistance and is falling frequently if I just leave the room for a few seconds. He left the house in the middle of the night a few weeks ago, has hallucinations and his coordination and ability to walk is increasingly impaired.
By Jenny on July 14, 2014 - 9:23am
Mark~ I'm very sorry to hear the news of the passing of your father. I was in your shoes a little over 2 years ago, losing my dad to sCJD. Such a terrible way to go, to see someone so alive and vibrant, full of life, to losing various abilities in such a short time.
Did you fill out the questionnaire from the CJD Foundation Patient Questionnaire about your father's symptoms, habits, etc.? I ask because I've been surprised at how many patients I've read about in my own research having heart surgery, and you mention that your dad had aortic aneurysm surgery. Nobody seems to recognize this as a possible similarity, so I'd love for it to be pointed out and tabulated by the CJD Foundation.
Wishing you and your family peace in this difficult time.
By nora on July 13, 2014 - 3:11pm
To Mark, I would like to pass on my deepest sympathy to you and your family at the sad death of your father from CJD. here in the UK up to 60 million people of us are known to have been exposed to BSE, in humans this displays a form of dementia (vCJD), recently we have had an inquiry into the risks of vCJD and Blood, Tissue & Organs here is a link to a recent story about dentists as a result of the inquiry if you would like more information from me do contact Lori for me e-mail address; http://dentistry.co.uk/comment/1050 It is vital that we do our research into CJD, as there are many routes of transmission.