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By Arturo de la Cerda on December 17, 2013 - 5:12pm
I'm sorry to read of your dad's diagnosis. Try to spend as much as time as you can. He may not recognize at times but trust me, he will know your there. My dad passed 11 years ago one month after his 50th birthday. He fought sCJD courageously for 4.5 months passing while in a coma. If you feel you would like to keep in touch with a family on a one to one basis, feel free to email Lori (email@example.com) and she will be more than willing to relinquish my contact information. Take care, God bless...
By Renee on December 17, 2013 - 4:37pm
My Dad who just turned 56 this year has been diagnosed with this disease, so I'm new to all of this & just wanted to find a place to turn for advice & help. Thank you to this foundation for all the information that it provides to the families of people with CJD.
By Todd (Indiana) on December 17, 2013 - 3:24pm
When my mother first discovered the CJD Foundation site, she was instantly comforted, mostly because she didn't feel alone anymore. She was given peace finally...
My father and I are both physicians. When I received the phone call from my mother on March 28, 2013 that something wasn't right with my father, I immediately knew that something terrible was wrong. You see, my father was in excellent health with no known medical conditions. He was very vigorous and active. His symptoms began with memory impairment and some difficulty with speech. All of his initial tests came back negative. His symptoms did not progress for a few days. He had further testing, and on April 12, 2013 we received the news from his lumbar puncture that he had elevated 14-3-3 protein. His repeat MRI now showed the characteristic pattern. I received the phone call from his neurologist that he has CJD. I already suspected that he had it due to his exceptional health. I had one prior patient with the disease years prior, so I knew what to expect, which was very difficult for me to accept. We took him home from the hospital and spent as time with him as possible. He died on May 26, 2013 at age 74, barely two months after his symptoms began.
If you have a relative or friend with this disease, then please realize you are not alone. It is a horrific disease with no known cure that is always fatal. Spend as much time with your loved one as possible - they will never be as healthy as they are today. Each day a little more of them will be taken over by the disease. They could not have done anything to prevent it nor slow the symptoms. You and your family will be in our thoughts and prayers.
By Michael, St. Louis MO on December 11, 2013 - 6:16pm
Hello to all,
Every couple of months I present a group of last names to see if anyone has one of these names in their family. Over many years I have been tracking family names back to my great grandparents who came from Presov, Slovakia. In the last 23 years, I am aware of 5 immediate and distant relatives that have died from GCJD. My maternal grandfather (who lived to be 86 and died from heart disease) had to be a carrier because my brother, mother and cousin have died from CJD. My cousin that died, her mom and my mom were sisters. But my aunt lived to be 96 and died in her sleep in a nursing home. She never showed signs of CJD but also had to be a carrier.I also have a case were one of my grandpa's siblings died from "a brain tumor" in the 40's and now his grandchild at the age of 62 was diagnosed by Dr. Geschwin and recently died. However, her mom never showed symptoms.I know I am probably starting to confuse you all.
Bottom line, my grandpa had 6 siblings. Many I never meet and have lost 2 generations of not knowing much of their or thei families histories. But I have found most last names over the years through an uncle that wrote a family history and I was able to get a copy of.
Does anyone on this website have any of these last names in their history: Turcek or Turocs, Beatty, lynch, Lofe, Loutsenhizer, Martin, Mattey, Matej, Kubecko or Obescini. We may be realated.Growing up I never knew 4 of my grandpa's siblings and obviously , 2 generations later none of their children or grandchildren.
But with the work I have done I can pretty much confirm or suspect 7-8 cases of GCJD over three generations. I am sure there are more out there.
Thanks for listening
By Laura on December 11, 2013 - 6:13pm
Just wanted to thank CJD for coming to Madison WI to hold a family workshop. I highly recommend that you attend one if it is ever near you. Very informative and good to meet others impacted by CJD.
By nora on December 10, 2013 - 7:45am
I am staggered at the sheer numbers of people dying from CJD not only on this website but also on facebook, we are told that CJD is rare but I have read about many people in their 40's and 50's with this disease,why are they developing this fatal disease, is it environmental, prion exposure,genetic? Could we be transmitting this disease to each other unknowingly? This form of dementia is becoming far more widespread not only in the USA but here in the UK, experts don't talk about CJD openly why is this?
By Angie on December 9, 2013 - 11:26pm
Hello...my mother just passed away in November from this HORRIBLE disease and I would like to talk to other people who have lost someone having this dreaded disease...Thanks....Angie
By Leah on December 8, 2013 - 1:09am
My father passed away last April after only being sick for 6 weeks with sCJD. Before his illness my family had never even heard of the disease. I'm glad I found this page as a sort of online support group and place to find current information.
By Jeannie Houser on December 6, 2013 - 4:46pm
My brother passed away September 25 this year of sCJD. He was 57. It felt like a train wreck and is still very surreal. You have questions ask them here. We've all been where you are.
By Arturo S. de la Cerda on December 6, 2013 - 3:27pm
I am so sorry to read of your husband's diagnosis. My dad passed shortly after his 50th birthday after a 4.5 month battle. Take care, God bless...
By Marian Hindall on December 6, 2013 - 1:54pm
please contact Lori for my e-mail address. Don't know if I'm doing this right :)
By Marian Hindall on December 6, 2013 - 1:49pm
My husband was just recently diagnosed with CJD. Trying to wrap my mind around all of this. He is 56 yrs. old.
By KT on December 5, 2013 - 12:19am
Thank you Kathleen. It sounds like your husband has a similar path to my dad.
By kathleen on December 4, 2013 - 1:41pm
You have to learn to forgive yourself for whatever you said or did that you regret. You could not have known what was going on with your mother - she couldn't have known either. But carrying around that load of guilt that you were unkind or hateful will not help her or you. We have all made mistakes and have regrets about our loved ones who were lost to cjd. What more could we have done? How could we have comforted them more? Was the care center the best place? Was he ignored by the staff? Was I patient when feeding him? Did he choke because I was so hasty? It never ends!! But you must not let it take over your whole life. Your mother wouldn't have wanted that at all and would be upset thinking of you living in the state you are in. Let it go. Forgive yourself for whatever it was and go on. If you did wrong in your own eyes, admit it and just go on. If you need to say it out loud, find a trusted friend and say it. But let it go. You are harming yourself and your mother's memory but beating yourself up every minute of every day. Healing will come if you give it a chance. You're in my prayers and thoughts and I'm sorry for the struggle you've had.
By KT on December 3, 2013 - 2:34am
I am struggling to come to terms with my father's diagnosis. I have a hard time accepting it when the doctors say it is hopeless. Part of me still does not want to give up. We were fortunate enough to get an early diagnosis, but it is still so hard. What did you all do to get through the pain of a watching a loved one lose their intelligence and slip away so quickly? I haven't had a happy day since before his diagnosis and I'm not sure how to be strong in front of him. He can sense the pain, which makes me even sadder.
By Danielle on December 2, 2013 - 2:58pm
I agree with Michelle in that most of us receive the diagnosis when time is limited with our loved ones. In my case, we found out on a Wednesday that my sister was diagnosed with CJD and by Saturday she was gone. Her condition progressed so rapidly within a one week period that it is so difficult to process. You are not alone...although I had the opportunity to tell my sister how much she meant to me, I will never be sure that she heard or understood what I was telling her. You must forgive yourself and try to heal. I have to believe that your mom would not want you to hold onto guilt. My thoughts are with you.
By Michelle in Philadelphia on December 2, 2013 - 11:53am
One of the cruelest things about CJD is that many of us do not find out the diagnosis until so late in the process. I know in my case I assumed that once the diagnosis was found, the illness could be treated. Then, when I found out it was untreatable, it was already too late to communicate with my loved one in the way I would have wanted. So, please, know that you are not alone in feeling overwhelming regrets. But, since we cannot change the past, we just have to do our best with the present and the future, as difficult as that is. Perhaps you can honor your mother's memory by doing something to make the world a better place in her name, such as by volunteering for a cause/charity/issue/place that meant a lot to her. I send my wishes for peace in your heart.
By Charlotte on December 2, 2013 - 12:05am
It will be 2 years when Pieces rises since my mother passed. It's a typical 3-4 nights a week that I feel the jolts in my bones, the pain of losing my mother and the awareness that she won't ever be here again. Two year ago she passed away from CJD, and months prior I ridiculed her for her behavior, her reactions to headaches, and her conditions that ultimately led to a diagnosis of CJD. But how would i have known? No none but health care professionals have ever heard of this disease and when they do they sigh and make a face that tells you there's nothing that can be done. I can still remember the last real conversation we ever had before I knew she was really sick. It was awful. I think about it every day and I can't get over it. It makes me sick how rude and mean I was. I'm only 24 and I can't imagine my life without my mother, and now that she's gone, I am having a harder time than ever to move on. I don't think I ever will. My heart aches for forgiveness and is strained for something that no longer exists. I don't ask why or how this happened. I ask now... how do I move past.
By laura gilliam on December 1, 2013 - 7:44am
Sadly, November 27, 2013, my mother in law passed away from CJD...we are unsure which kind yet...autopsy results are pending...November 4, we took her to the ER with what we thought was a mild stroke...her DR said all tests were clear but we knew something wasnt right...on November 8, she was taken to another hospital and admitted for testing for a stoke...once again all tests were normal...November 13, the diagnosis or CJD was murmured to us...the nursing staff didnt even know what it was much less how to explain it to us...on November 20, she came home...7 days later, she was gone...this disease is a terrible thing that strikes fast without many warning symptoms and life this past month has seemed like a dream...Her last 8 days were without any liquids or nourishment of any kind and very little medication...She was a very strong willed and feisty person in the best of health for a 67 yr old...My prayers are with everyone touched by this disease...I have become very educated on CJD in this month and even though Im a firm believer in knowledge is power...I feel powerless and overwhelmed by the rapidity and devastation of this disease...I am unsure what the autopsy results will hold for my future...was it sporadic or familial and even with that answer there are so many more questions and fears for my husbands health and that of our family...My wish for the future,besides a treatment/cure,would be that medical personnel be better educated on CJD or at least be made aware that it exists and is more widespread than statistics report...Our family agreed to donate her brain to the foundation for research purposes along with testing for type...hopefully a difference will be made in the lives of others...thank you all for sharing and responding...it has been a comfort to know that there are others out there going throught the same thing... RIP JoAnn Newton Copperhill, TN
By MJ on November 30, 2013 - 12:12am
Hi all. My mom was hospitalized this past week and her doctors suspect CJD. We are waiting for test results back from the CDC. She's had some symptoms for the past couple months, but rapidly declined over the past 2 weeks. Seems so surreal and hard to accept. She is 60 years old.
By kathleen on November 29, 2013 - 12:15pm
So sorry about your mother's passing. I know you had been especially close to her since you lost your husband.
cjd is such a mystery and each case is so different it's very hard to predict anything about it. My husband had symptoms that were strange and hard to diagnose but was still very active and lucid for months and months. His gait was off and yet he would go to the gym with me and run, not walk the course. He was physically very strong and lifted weights at the gym as well as walking/running. It was hard to believe that it would progress - but of course, progress it did. There is probably no way to know how it will go with your father but just getting information from the Foundation and from this site will help you to watch for signs and to prepare yourselves for whatever happens. You're in my prayers along with this whole family.
By Arturo de la Cerda on November 28, 2013 - 5:33pm
Sorry to read of your dad's diagnosis. This mysterious monster that invades our loved ones is shows its symptoms in different ways, case by case. From what I remember, my dad's dominate symptom was dementia. He did have gait but that was became more frequent about after the diagnosis was made. My dad passed shortly after his 50th birthday after a 4.5 month battle. Looking back saw symptoms spread out across 10-20 years. Take care, God bless...
By KT on November 28, 2013 - 3:54am
I am looking for any helpful information as to maybe what we should expect. The doctors can't really tell us much because this is so rare, but we are at a loss. My dad started showing confusion and disorientation in June. Since then, his memory has gotten worse and he often gets lost. He is, however, physically in the best shape he has been in for the last 20 years. He is exercising frequently walking and lifting weights and going to classes. One minute he seems like himself making perfect sense and then he will have moments where he doesn't make any sense. About a week ago, doctors diagnosed him with Sporadic CJD after reviewing his MRI showed cortical ribboning all the way around his brain and his EEG was abnormally slow, and his spinal fluid tested positive for the protein. But the doctor couldn't explain why he is not showing any physical symptoms. His balance, gait, coordination all seem normal. Do physical symptoms just start appearing out of the blue with continued cognitive decline? He is already 5-plus months after showing symptoms. Anyone have any advice for how we can help him to be as comfortable as possible with this awful disease?
By Lynn Lofgren on November 27, 2013 - 11:36pm
HAPPY THANKSGIVING! I know it sometimes seems that there is not much to be thankful for after losing a loved one to this disease but we have our own lives to be thankful for and the extended family we have all gained due to this website and the Facebook pages. Count your blessings and enjoy the holidays as much as you can - I know it will be difficult this year for me as we just lost our Mother to cancer 2 weeks ago but I still have a lot of loving family support.
By kathleen on November 27, 2013 - 2:12pm
Reading the latest additions to this guestbook brings tears to my eyes again! It is so sad to read the stories of loss and tragedy that accompany cjd victims and their families. It's impossible not to be moved by them. Tina, I just read your story and it brought real pain to my heart to read it! It sounds so much like the road my husband and I took before his final and correct diagnosis. It wasn't as bad nor as long as your journey looking for help but I understand every word you say. It was a long, hard road. One that I wouldn't wish on an enemy, no matter how much they had hurt me.
The holidays and their approach brings so many memories and so much loss to the forefront. We all suffer the loss of our loved ones, our traditions, our innocent joy. Now it is with tears that I think of how to celebrate and not to dwell so much on the past, for the grandchildren's sake. They want to remember but not to be gloomy and sad. It's a challenge to get through these days and keep perspective. Hang in there everyone! I pray for all of us and our families everyday, myself included.
By Arturo de la Cerda on November 27, 2013 - 1:53pm
To all new comers to the guestbook, Welcome! Even though you have endured the trials and tribulations of this monstrous disease you are now apart of an elite family. I lost my dad 11 years ago after he fought this disease courageously for 4.5 months. He passed 1 month after his 50th birthday. If any of you would like to keep in touch with someone on a one to one level, please email Lori (firstname.lastname@example.org). She will be more than willing to relinquish my contact info. Take care, God bless...
By Holman cano on November 25, 2013 - 3:49pm
On November 18th my father passed away from cjd. 12 days shy of 1 year from when he was diagnosed with this disease.
By Jonathan Witmer on November 24, 2013 - 11:37pm
My beloved wife Elaine died one year ago today from CJD. I and my family all miss her still!,