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By KT on December 4, 2013 - 11:19pm
Thank you Kathleen. It sounds like your husband has a similar path to my dad.
By kathleen on December 4, 2013 - 12:41pm
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 - 1:34am
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 - 1:58pm
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 - 10:53am
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 1, 2013 - 11:05pm
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 - 6:44am
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 29, 2013 - 11:12pm
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 - 11:15am
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 - 4:33pm
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 - 2:54am
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 - 10:36pm
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 - 1:12pm
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 - 12:53pm
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 - 2:49pm
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 - 10:37pm
My beloved wife Elaine died one year ago today from CJD. I and my family all miss her still!,
By Sue Webb on November 24, 2013 - 8:08pm
On August 19, 2010 I lost my sister to CJD. She was diagnosed in May. Luckily she had a wonderful male companion that took care of her until her death. She was 62. She gave permission to send her brain to a clinic in Cleveland for autopsy. We were told she had a very very rare mutation that she was 1 in 4 people in the world to have it. It came from somewhere in our family. It still seems really surreal that she was taken from us by this rare disease.
By nora on November 24, 2013 - 5:48pm
Have a look at the redcrossblood.org website and look up CJD and vCJD, there are specific rules around donating blood in the USA, there will be many US citizens unable to donate blood due to the reasons given on this website. Here in the UK up to 60 million of us are still banned from donating our blood overseas due to the risks of being exposed to BSE but we are allowed to donate our blood in our own country which does not make sense to me really.
I hope the Prion Clinic can be of help to you.
By Ben on November 23, 2013 - 10:26pm
Nora, I have heard about that but thought it was kind of UK exclusive since vCJD never happens in the US "supposedly." I will look into it..thank you.
By Nora on November 23, 2013 - 10:27am
Have you heard about a blood test for vCJD, it is available to all neurologists, it was developed by Prof.John Collinge at the Prion Clinic, UCL, London if you google his name you should find their website. From what I understand they can test for vCJD not sure about CJD but it is worth contacting the Prion Clinic for help as I am sure this test is available to neurologists around the world. It is not an invasive test but a simple accurate blood test. I hope this helps.
By laura gilliam on November 22, 2013 - 10:43pm
Wednesday of this week, my mother in law was brought home to spend her final days...we have hospice there with her and were told to expect no more than 3 to 5 more days with her...we are still in shock over this disease and i thank all of you who have shared your stories and who have responded to mine...
By Ben on November 22, 2013 - 8:21pm
Thanks Jenny. I've now been informed that none of my old neurologists will see me since the test came back positive. It's as if I'm a plague or zombie or something. Talk about feeling like I'm on island. It's horrible UCSF now recommends I do a self referral.
By tina carlisle on November 22, 2013 - 7:58pm
I've not been or posted in awhile. It is so overwhelming to see so many new families suffering this horrible disease, my heart goes out to all of you. My mother passed away in August 2011. Because of no autopsy I don't know which strain took her from of lives. She was clinically diagnosed in June 2011. I now believe her symptoms began July 2010 after a fall in which she hit her head very hard. She began having episodes of blanking out while being spoken to, when she would rejoin us, she would begin talking about something totally different. IN February 2011, she awoke in the middle of night, went to the bathroom, woke my father up, then got back in bed. Within minutes she had what my father thought was a seizure. She was shaking and unresponsive. 911 was called and they too were unable to get a respond. At the hospital she finally came to, not knowing anyone in our family, not even her husband of 60 years. She was very aggravated and kept saying she had to go, where she did not know. Transferred to Pittsburgh UPMC, test after test were performed including 2 spinal punctures. Her memory was improving daily, we were informed that the protein level in her brain was over 400, when asked what was normal they said 50. They also did MRI, nuclear medicine study, 24 hours EEG, after the first spinal tap and protein level so high, they asked to do a second because they told us they felt the first was a mistake. The second spinal tap confirmed the first one was no mistake. One medical Dr there told us to be prepared it was something really bad, no mention of CJD was ever mentioned. The neurologists diagnosed her with the on set of dementia, she was released back to the local hospital for rehab! She was continuing to improve when we found out her husband had to have a quadruple by pass. She was on one floor of the hospital, my father on another. Because of Dad's surgery we had to place mom in a nursing home to continue her rehab. We had no choice, my father took top priority at that time. Mom settled in nicely and was progressing, until one day as she was walking to the dining home, she quit and her legs buckled, the next day she was in a wheelchair, she could no longer walk, she began hallucinating, she couldn't remember words, and again she didn't remember her own family. She eventually became very combative, disruptive, refused medication, and as she was reaching for some invisible things she fell out of her wheelchair. Taken to the hospital for evaluation, making sure nothing was broken, staff was ready to release her when my sisters-in-law informed them of the prior tests results especially unusually high protein level. She was again transferred to Pittsburgh, this to Allegheny General. The ER doctor checked her out said everything was ok, my sisters-in-law asked for 5 minutes and explained about all prior testing, he admitted her immediately. By them my mother was in a catatonic state. For four days she stared at the ceiling, the first neurologist that saw was shown her current EEG, she took one look at and looked at my mother, crumpled it up and threw it in the trash. She said what was showing on the EEG did not correspond with the condition my mother was in. That is when we heard those awful 3 letters, CJD, another spinal tap was ordered, this time it was sent to Case Western, 3 weeks later, I answered the phone, it was the doctor giving me the devastating news. Our family gathered in a room at the hospital, surrounded by doctors, nurses, and social workers with the news that forever change our lives. The social worker went to work getting my mother placed in a nursing facility. We had no choice of taking her home, my father at the time was 85 and was recovering from open heart surgery. In one day we were turned down by 9 nursing homes. The previous nursing home Mom was in denied her return, after we let her room go because we didn't know how long she would be in the hospital at the beginning. As long as we were paying there was never any mention of her being too hard to handle, a threat to other clients, or a threat to the staff. When we told the director we would let the room go, we were told it would not be a problem for her to return after her hospital stay. She changed her tune after she found out that my mother was unable at that point to do anything for herself and needed to be watched 24 hours a day, because mom still insisted she had to go somewhere we would never know!!! We were at our wits end when out of the blue we got a call from a nursing home within 10 minutes of our family home. Finally she was transferred close enough to home that all family and friends could visit any time. At the time we were going through this I did not have access to my computer. I did not know of this wonderful web site until over a year after my mother died. Like so many of you we did not know what to expect, what to do, where to find answers. After the tests results confirmed CJD and our initial meeting with hospital staff, with no hope, no treatment plans, only hospice care and comfort medications, we had very difficult decisions to make. My mother was on medication for her heart, high blood pressure, diabetes, arthritis, she had a UTI that was not clearing up with oral medications, they wanted to insert a port for antibiotics. I've mentioned my sister-in-laws which are wonderful and more like sisters. I am the only the daughter, with 2 brothers. The night after the meeting the three of us sat down and weighed all information. That night we agreed to end all medications except comfort medication, no more pills, no port for antibiotics, no more insulin. We realized if the doctors could give us not one glimmer of hope there was no point to prolong trying to keep her heart from failing or stroke from high blood pressure. We knew at that point it was no longer in our hands, and that we had no control. We put her in God's hands where she always had been. That night as we sat on the front porch of our family home and cried we knew it was not about us! It was about our mother and what was best for her and what she had outlined in her medical directive. For those of you reading this, as hard as it is you must put your loved one above all else, what would they want, this is their journey and your responsibility now is to make this journey as safe, and easy for them. Listen to what they want, let them tell you their fears if any, do not be afraid to crawl in bed and hold them close, take pictures, and tell them everything you have in your heart! Do not let anything go unsaid. Take joy in caring for them, CJD not only steals their life it steals their dignity, they know the things they cannot do that was once second nature to them. Your tender loving care if the greatest most precious gift you can give them now. Taking care of my mother at the end of her life was my last gift to her and the most precious. I too filled out the questionnaire , and it felt good to do so, but I have never had any feed back from it. It's been 2 years and 4 months since my mother left me, at times I still find myself picking up the phone to call, only to realize she's not there. For those of you with questions and may just want someone to talk to that have walked the path you find yourself on, please call Lori and ask for my information, the holidays are upon us and I know how heartbreaking it is to be without someone you loved so dearly. I am willing to share your heartache, your concerns, and just another shoulder to lean on!
By kathleen on November 22, 2013 - 11:24am
It is so disheartening to read of so many new people affected by this horrific disease. This is such a wonderful place to come, though. There is comfort and understanding on these pages. You can vent, cry or just tell your story and the story of your loved one. It's been a wonderful help to many, many people.
By Jenny on November 22, 2013 - 10:00am
Ben--I'm sorry to hear of all the symptoms you've been experiencing. Not sure if you live in the S.F. area or not. If you do, certainly go see Dr. Geshwind at UCSF; but if you don't, he can read your MRI. My dad was seen by a ton of different doctors, had an extraordinary amount of tests, etc., but Dr. Geschwind was the only one to diagnose his CJD. As you may know, every case is different. There are certainly similarities, but age, symptoms, duration, etc can vary. My dad had different symptoms than most, and his illness lasted much longer than most. His diagnosis was confirmed by autopsy. Best of luck to you. Please keep us posted. I hope you get into UCSF soon.
By Ben Brickman on November 21, 2013 - 7:37pm
Hello everyone. My name is Ben. In July 2012 I begin to experience major psychiatric symptoms such as depersonalization and derealization as well as dissociative thoughts. In October 2012 my memory began to fail, starting with words, then long term memories, by March 2013 I began to become disorientated driving to and from my own house also around that time my short term recall began to fail, I could barely remember what I had done the day before and everyday was like a blank slate. I went to Mayo Clinic in May seeking answers and got none. They did an EEG and MRI as well as more blood tests than I can even count. I asked the neurologist about a prion disease and was immediately dismissed because of my age( I'm only 28). Because of time limits I was not able to stay at mayo for all the appointments and had to come back home. Throughout the summer my memory worsened and I began to forget if I had taken my medication and what meals I had eaten that day. Also my depression and feelings of terror worsened. On July 5th I saw a cognitive neurologist at the University of Missouri and he reluctantly agreed to do a Lumbar puncture. I must admit that I waited several months for it out of fear of the results but as my short term memory continued to worsen I finally built up the courage. I had the spinal tap on October 30th and received news Monday night that it showed elevated amounts of 14-3-3 protein. Since then the doctors who ordered the test have been very slow to react. The cognitive neurologist refused to see me again and the one who ordered it said he did not know what to think. Neither will diagnose me or say that I don't have CJD or vCJD. I am scared and feel so alone and helpless. To anyone who feels this way please know that YOU ARE NOT ALONE. I'm now trying to get into the UCSF memory and aging center for further evaluation. All this while still trying to hold down a job. This is my story. I'll update you with any new developments. -Ben
By Jenny on November 21, 2013 - 6:20pm
To all the new contributors to the guestbook: I am sorry you are here! Breaks my heart to check in every few days, and see new people here. I have found much understanding and support here, with people who truly know what we're going through, and have been through; I hope you find the same.
By Skip on November 21, 2013 - 2:55pm
My wife diagnosed with CJD last Friday, first symtoms 4 weeks ago now in hospice and she is starting to have troboule swallowing.