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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 firstname.lastname@example.org 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.
By Mark on July 12, 2014 - 5:04pm
First let me express my gratitude for all of your support in response to my post on June 16th. Secondly,my compassion goes out to all of you with family, friends etc., who are currently being effected by this disease.
Since, I sent an SOS to this site on June 16th, 2014 regarding the disturbing possibility that my Dad's MRI might be showing signs of CJD, I have encountered something that I am short of words to describe. He died on July the fourth. His symptoms came on like a freight train. In less than 30 days he went from being uncomfortable with his legs and complaining of blurred vision and lack of ability to concentrate, to comatose and dead. Through MRI, EEG and presenting complaints, we were able to confirm diagnosis. The accurate information found on this site, the CDC and WHO, enabled us to care for him and allow him to pass away in his home. The diagnosis was confirmed by three neurologists and his death certificate lists the cause of death as CJD. The type was not ascertained as I refused a biopsy. Although I suspect Iatrogenic.
I found through research that three (potentially four) others have died of confirmed CJD within the Charlottesville/Shanenndoah Valley area of Virgina since 2011. My dad had a sebaceous cyst removed from his neck. One neurologist believes that this incidence is relevant. He also had an aortic aneurism surgery. I have no idea if the others who passed away from CJD had a surgery around the same time at UVa hospital, but I do know that the area he lived in had far less than one million people. 22,000 in the town he lived in. The folks at UCSF encouraged me to report this "coincidence" to CDC, which I will do next week. I will do all I can to make sure that this disease is taken very seriously. I documented every stage and will report the process to those policy makers and scientists who can make a difference.
To all of you who have been in the position of caregiver to your loved ones, I know personally, what you have been through. My heart goes out to you all. My only advice to those currently coping, is to be present with your loved one/patient. Time is short. I hope you will find a way to remember your loved one as they were before this horrible wasting disease took hold. I know that it will take a long time for me to come to terms with what has just happened to my family. You are all in my prayers.
By Arturo S. de la Cerda on July 12, 2014 - 12:16am
I am sorry to read of your sister's diagnosis. This disease truly a monster in hiding, but we are glad you have fund us. You and your family are part of a new family spanning the world over and we will walk with you during this difficult time. My dad passed 12 years ago. He courageously fought this disease for 4.5 months. He passed one month after his 48th birthday. I was 12 myself, so I maybe able to relate to your nieces. If you would like to stay in contact with me, 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 Natalie on July 11, 2014 - 3:54pm
My sister who is 45 years old with 2 daughters 12&7 was just diagnosed 4 weeks ago. Everyday it gets harder and harder.
By Lisa Selander Cook on July 11, 2014 - 10:25am
Dear Tracy and Betsy, My Mom passed away June 29, 2014 from CJD. She had just turned 68. Spend as much time as you can with your Moms at this difficult time.....the first few weeks are so confusing after the diagnosis but it is important to let your moms know they are safe and loved. I thank God for the CJD Foundation and their website....and wish there was a segment on the Today show about this disease to make more people aware of it. You are not alone.....Lisa (sister to Todd).
By Jenny on July 8, 2014 - 2:37pm
It's been a while since I've been on here, and, as always, I'm saddened to see the new entries. Todd and Genny--my sympathies to you on the passings of your mothers. I know the shock, sadness, anger and all the other emotions you're probably going through. I'm sorry. It's been over 2 years since my dad's passing, and I'm still experiencing all of them. He's in my thoughts every day. Did either/both of you do autopsies on your mothers? I know it's a personal question, and I don't mean to pry, but I believe the research gained from those (as well as getting a confirmation of diagnosis for your family) and from the CJD Foundation questionnaire is invaluable in helping to one day find a cure. And Tracy and Betsy--so sorry to hear the news about your mothers, too. Like many others on this board, I know the road that's ahead of you. It's certainly not one I would pick for anybody; I hope you find the support and information here helpful during this time.
By Todd on July 8, 2014 - 12:43pm
My mother passed away on June 29th, 2014 at age 68 from CJD. Her funeral was on Saturday, July 5th, 2014. Genny, I know exactly how you are feeling. My mother was diagnosed on April 10th, 2014 and after 11 weeks, it feels unreal that this has happened. Watching someone so smart decline is heart wrenching. I will miss my mom every day for the rest of my life. I told her every day that I love her. Spending as much time with your loved one while he or she is going through this makes all the difference in the world. My step-father, my sister, my brothers and I were there when she passed. I held her hand from 5:15 in the morning until 5:08 pm when she took her last breath. I did not want to leave her side all day. No one deserves to go through this. CJD is an awful thing and I hope that we find a cure so no one else has to suffer through this.
Thank you to the CJD foundation and for others on the guestbook for all your help and information.
By Genny Cecil on July 7, 2014 - 3:58pm
My mother passed away on June 11th 2014. She was diagnosed with CJD in the beginning of May. We went into the hospital on April 30th and within 6 weeks my mom was gone. She was 64 yrs. old, 4 mths. shy of her 65th bday. I watched her go from being a strong beautiful woman to a very frail, confused person in the end she could not eat or speak. My sisters and I are still in shock, it happened so fast. I am grateful to the CJD foundation for providing us with important information. The information helped us make the necessary arangements for making our mother's last days with us as comfortable as possible. Since there is nothing anyone can do to stop this horrible disease. It is best to prepare and spend the precious time you have with your loved one. Never stop telling them how much you love them. My mother took her last breath and left us with a smile on her face. We are at peace knowing we did all we could for Mom. More importantly she is no longer suffering.
By Arturo S. de la Cerda on July 7, 2014 - 2:17pm
I am sorry to read of your mom's diagnosis, but we welcome you, your family, and your mom along with your journey CJD. My dad passed passed 12 years ago. My dad courageously fought this monstrous disease for 4.5 months, passing one month after his 48th birthday. When I was 12. f you would like to keep in touch with a family on a one-to-one basis feel free to email Lori and she will be more than willing to relinquish my contact information. Take care, God bless...
By Arturo de la Cerda on July 7, 2014 - 2:14pm
I am sorry to read of your mom's diagnosis, but we welcome you, your family, and your mom along with your journey CJD. My dad passed passed 12 years ago. My dad courageously fought this monstrous disease for 4.5 months, passing one month after his 48th birthday. If you would like to keep in touch with a family on a one-to-one basis feel free to email Lori and she will be more than willing to relinquish my contact information. Take care, God bless...
By Daisy on July 6, 2014 - 10:06am
I like many others on this site am very sorry to hear the sad news about your mum. My suggestion is to contact the CJD Foundation, who will give you accurate information and support.I wish you and your family well, and hope you find strength during this difficult time
By Tracy Whatley Jowers on July 5, 2014 - 6:08pm
Hi am Tracy I'm from Mobile Alabama and we were told yesterday that my mother has CJD . My Brother and Sisters an I know nothing about this so if anyone wants to talk to us about it that would be great ! We are just devastated
By Betsy Brady on July 5, 2014 - 2:37am
Hi my mom was just Diagnosed with this disease.looking for information and support
By Tracey on July 4, 2014 - 3:56pm
Can't tell you all but they ran everything from diff blood tests, urine c&s, mri, cat scan. THe eeg picked up the abnormal brain function. They also did a lumbar puncture. Everything to rule out a bacterial or viral infection. They all came back negative. In early April she was driving her car then she rapidly declined to being comatose. SAdly, we buried our mother today.
By Benny on June 30, 2014 - 6:54am
Hey guys... I think I may have CJD... A couple of years ago, I got confused for a couple of days, with memory loss and agitated... Then it happened again 1 year ago, where I had a day of confusion... Now last 1/2 year I have been getting confusion and short term memory issues and disorientation, which have been getting worse... Does it sound like CJD? My doc didn't find anything wrong with my MRI or EEG
By Josh on June 30, 2014 - 4:16am
Tracey, What tests did they run on your mother until they diagnosed her as having CJD?
By Tracey on June 29, 2014 - 8:36pm
My beautiful mother passed away this morning from this horrible disease. It was so rapid we didn't know what was happening. My sister and I watched her deteriorate before our eyes. She was in the hospital since May 31st (today is June 29th) and for over the last 3 weeks she has been basically comatose. Mom was 78 years old, but looked at least 10-15 yrs younger. She is my best friend and when this really hits me that she is gone forever, I haven't a clue how I will get through this. CJD robs a person of everything until all they have left is lying in a bed and breathing. My heart goes out to all who have been a witness to this disease. Hopefully one day a cure will be found.
By Daisy on June 29, 2014 - 10:32am
I am very sorry for the loss of your son,I look forward to your book.Thank you for sharing.My sister passed away from sporadic CJD two years ago,but I have read extensively on VCJD And feel very sad for those families,where this could have been avoided.I wish you and your family all the best
By Buckland on June 29, 2014 - 4:17am
Our family lost our only son to VCJD as a result of this I have now written a book on the subject .its title The Witches Within Westminster , due to be published 31st Juli 2014 please read it and share it is a v important publication
By Nora on June 25, 2014 - 3:51am
To David a Fish,
Never heard of a treatment for CJD/vCJD but if you are really concerned about a cream then my suggestion to you would be to contact the UK Prion Clinic in London who are worldwide experts in diagnosing this disease they should have the latest information on tests etc. they have a website.
By Todd on June 24, 2014 - 9:26am
I am so sorry to read that your family carries the genetic form of this and that you've lost some of your family at such early ages.
My mom's birthday was yesterday, June 23rd. She turned 68. She got her hospital bed yesterday since she can no longer stand. She is having a very hard time seeing and when she speaks, she is not making much sense at all. It is devasting to see her going through this. I don't think my siblings or I have cried so much in our lives. I still can't believe that this is happening but it is.
I read all the posts on here and can empathize with all. We all know what this is like. I have to hold on to the fact that we will all see our loved ones again someday. It's the only thought that gets me through this.
By Michael on June 23, 2014 - 3:29pm
My maternal great-grandfather and grandmother both came to the states from Presov, Czech. They had 7 children born in the USA. Their second born was my maternal grandpa. I have discovered that my family has
Genetic CJD. All 7 of these folks born in the USA worked for the coal mining industry in and around Heckla, Greensburg, Trauger, PA. Research reveals that those of us with a CZech heritage have a higher rate of GCJD for whatever reason??? In tracking family history, I suspect that atleast 4 of the 7 were carriers of the gene. Two of them were carriers but never revealed symptoms but their offspring died from GCJD. I am just wondering what the incidents of GCJD is in western, PA related to the very high immigration population that were recruited from CZECH to work the mines.
I have lost my mom (age 59), my brother(age 56) and a first cousin(age 59)to this illness.