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By Darlene Daniel on September 12, 2013 - 1:48pm
My brother was diagnoised with Parkinson's disease in January but the disease has progressed so fast that they are leaning more to him having CJD. He was a Pathologist and about 15 years ago did an autopsy on someone with CJD that was unknown until he was already possibly exposed to it. He has said since day one that he had CJD and not Parkinson's or at least along with Parkinson's. Five weeks ago we had a spinal tap done and just found out today that the vials of spinal fluid was lost or misplaced between our local lab where they were taken to be sent to an out of state lab. Enough spinal fluid was saved to see that his protein was very elevated but not enought to make the CJD firm diagnois. My brother is already completely bedridden and we had to take him to the hospital for the spinal by ambulance so I do not want him to have to go thru that again. His doctor is going to ask Hospice to draw blood for a serum test that might along with the protein test allow him to make this call on CJD. Has anyone had this blood test done and if so could they make a diagnois from that?
By Elaine Anaheim, CA on September 12, 2013 - 9:12am
Donna, I live in Orange County as well. My family has the genetic version of cjd. My sister saw a neurologist by St Joe's Hospital, though she was near the end at that point and had been diagnosed in Texas. I have seen him myself and he told me he had seen his second cjd patient in his very lengthy career. I have also been to UCSD and worked with the wonderful staff there. I pray this diagnosis is not what your husband is dealing with. Please let me know if you want the doctor's information in Orange County and feel free to contact Lori if you would like my personal email for any questions or just an ear to listen. We all understand your feelings and I would be glad to do what I can to help since we live close. Take care, Elaine
By Michelle (Philadelphia) on September 12, 2013 - 8:09am
Scott: It must be such a burden for you to carry around this uncertainty. If you haven't talked to Lori at the CJD Foundation yet, give her a call or e-mail. The contact information is on the CJD Foundation Web site. She helped me with a lot of the issues that came up when my uncle was diagnosed. She can probably recommend a neurologist in your area who knows about CJD.
Diane: Every person with CJD will be different, but I can tell you my uncle's experience, which was roughly a 3.5-month span from the first symptoms until death. Diagnosis didn't come until my uncle had already stopped talking and eating, so the neurologist recommended hospice. It took a few weeks to find a hospice that would take him, but once they did, they stopped IV fluids, and then death came in about 2 weeks. His body was still so strong and healthy looking. It was one of the hardest parts for me--seeing him without the IV.
By Diane on September 11, 2013 - 7:09pm
My 75 year old mother has been diagnosed with sCJD. We took her to UCSF and met with their wonderful staff and have donated her body to them after she passes. She was taken to the hospital June 6th and has not been home since. My question is for those family members who have been through this: how long after they fell into coma like symptoms did your family members pass? I see my mom suffering and want it to end. I KNOW she is in there and has been in there (trapped in her body) this whole time. Anything will help. Thanks in advance, Diane in California.
By scott spillane on September 11, 2013 - 1:21pm
i was given natural extraction human growth hormone for about a year before the program was suspended pending the creation of the synthetic hgh. i got a letter from the board of health years ago letting me know i was at risk for cjd. i have had many health issues related to hgh and am currently having what appears to be nervous system issues... without warning my right hand will just open up when carrying an item and i'll drop the item on the floor, i also have twitching in my face that comes and goes, suffer extreme migraines, and vision that gets blurry from time to time. came to this site looking for information.
By Kris Clagett on September 9, 2013 - 11:49pm
My heart goes out to all of those that have learned this past week that they have been exposed to CJD through the contaminated surgical equipment in New Hampshire and Cape Cod. We lost my dad in April of 2011 to sporadic CJD; he passed one week after his diagnosis. Unfortunately no one knows of this disease until it robs you of your loved one in the most cruel and unusual way.
I am always awestruck by the number of new entries here and continued loss of loved ones due to CJD.
May peace be with you all,
Kris Jahnke Clagett
By debbie dattilo on September 8, 2013 - 10:39am
Carmen is my stepfathers cousin and Pam i met only briefly but I found her to be a lovely person. I admire your website and your tribute to your mom and informing others of CJD because there is so little known about it and it is misunderstood. I know that Stitchy misses Pam very much and her passing was a tremendous loss. I hope you can all heal from the work you are doing educating people and trying to get the blood banks to test for these diseases before distributing blood to the general public. With much sympathy and prayers for your family.
Barbara and Andrew Giannelli
By Jenny on September 7, 2013 - 8:31pm
You're welcome, Donna. Best of luck to you and your husband. Hope they find it's not CJD. Please keep us posted, if it is.
By charlene gilmore on September 7, 2013 - 8:20pm
I lost my husband two years ago to this terrible disease. He complained of headaches early on. Then he started talking about things that happened years ago. A trip to the hospital I was told he had frontal lobe dementia at 64 years old. He stayed in the hospital for a week, I took him home but I could not handle him , he had sundown syndrome. That same night my children and I had to bring him back to the hospital. He never came home after that. They took every type of test on him, the last one was a spinal tap , I can remember sitting in a room with my children and a doctor telling me what he had and he had about 6 months to live, he past away in 3 weeks. I miss him with all my heart and I know that he is watching over his family.
By Arturo (Oxnard, CA) on September 6, 2013 - 11:25pm
I'm sorry to read of your mum's passing. This disease is unpredictable and unforgiving. My dad passed 11 years ago, after a 4.5 battle with sCJD. He passed one month after his 50th birthday. Many of us are apart of a FaceBook group named "CJD Family". This other group gives us another venue to stay in contact the world over. Take care, God bless...
By Laura (Italy) on September 6, 2013 - 12:16pm
I lost my dad six weeks ago because of sCJD. It all went so fast! Within two months he passed away. He walked in the hospital on 15th May more or less normaly, but within 2,5 weeks he lost all he ever had learned in his life. It was so horrible to stand next to him, watching him suffer and not having the chance to help him. The only thing that I and my Mum could do, was to be with him. We were everey day, every hour next to him in the hospital. We spoke to him, held his hand and cried with him. Somethimes I think, that this was the most intensive time we ever had together. I loved my dad so much and I'm shure he is not totally gone but still protecting us. I'm with everybody who lost or is loosing somebody on this bad bad disease. I understand what you are going trough and will pray for your loved ones too.
By Kristin on September 6, 2013 - 7:41am
Today is my Mom's Birthday, my kids and I miss her so much. We lost my Mom on November 6, 2011 to this horrific disease. My thoughts go out to all who have lost and who are currently going though this with a loved one.
Happy Birthday Mom! Miss You So Much!
Alex, Katelin and Me
By Tricia C on September 6, 2013 - 12:05am
Tomorrow would have been my mother's 83rd birthday. She died about 18 months ago from sCJD. My family is getting together to celebrate her life. It will be bittersweet. Being on this site is comforting yet heartbreaking. So many new cases, so many families living through the unimaginable. To those of you new to this unpleasant journey, know that there are people here that can help you through this. Love to all.
By Donna on September 5, 2013 - 9:17pm
I asked for your email but haven't received it yet. This was your post to me "Sorry to hear what you're going through. My advice would be to send your husband's MRI(s) to Dr. Geschwind at UCSF. He was the one (the only one) to correctly diagnose my dad's illness, based solely on MRIs (not seeing him in person). Every CJD case is different. Some are very quick, and others are longer. Sometimes symptoms stabilize/plateau for a few weeks or months. Best of luck to you and your husband."
I called them today and they were amazing. I went and got our MRIs on CD and our medical records and UPS'd them to them in San Francisco today at 3 PM. Quite a day. But they promised to have results for us by next week. That is unbelievable. And at no charge because they are a research facility. Whatever the results, we rather have them soon. Thank you so so so much for locking onto this valuable resource. I would love to communicate with you personally. Thank you Jenny. Perhaps you can also contact Lori and get my email.
By Arturo S. d.l.C. (Oxnard, CA) on September 5, 2013 - 8:31pm
I am sorry to read of your mom's death.My dad pased 11 years ago, after a 4.5 battle with sCJD. He passed one month after his 50th birthday. Many of us are apart of a FaceBook group named "CJD Family". This other group gives us another venue to stay in contact the world over. Take care, God bless...
By niloo on September 5, 2013 - 3:13pm
This is my first time on this site. I wish I had found it sooner when I was going thru my mother's illness. I lost my mother to CJD in December in Iran. Her diagnosis came 3-wks after her death, as they had to send her spinal fluid to Europe for testing.
Her illness was fast. Her memory and her eye sight were the first to go, and boy did they go fast. From the time we knew something wasn't right with her to the day she died, was exactly three months.
I am still mourning her loss. I cannot believe she died from such a rare disease.
By Michelle (Philadelphia) on September 5, 2013 - 1:04pm
Todd, I also read about the New Hampshire patients. It must be incredibly confusing and scary for these patients to know that this may or may not affect them some time in the future. But I have to admit that, as I am still reeling from the trauma of watching a loved one succumb to CJD in July, I am comforted from this New Hampshire news because it demonstrates that surveillance is being taken very seriously. Maybe also this news exposure will have the effect of increasing awareness in the general public, which could help with funding for research.
By Todd (USA) on September 5, 2013 - 11:49am
I haven't been on the site for a while, but my heart aches when I read the new posts about newly diagnosed loved ones. My dad died in May this year about 6 weeks after his diagnosis. We are still adjusting the "new normal", but it still seems very unfair and unjust. He was a great man who helped thousands of people.
I heard on the news today that some patients in New Hampshire may have been exposed to the disease. I wish them all the best and hope none of them gets this monster.
Let's all hope that a cure is right around the corner....
By Arturo S. d.l.C. (Oxnard, CA) on September 5, 2013 - 11:26am
Has anyone's loved ones been diagnosed with sleep apnea prior to CJD. I don't know much about sleep apnea about from what my mom told me my dad would stop breathing 3 to four times a night. After the CJD diagnosis my mom told me that he had a hard time falling asleep even with medication, but Sporadic Fatal Insomnia was ruled out. H ave a blessed weekend Family
By Lynn Lofgren on September 4, 2013 - 11:04pm
Donna, the mild memory loss was an early symptom of my husbands that he hide for a long time before it became more apparent to me. He kept telling me that I did not tell him things when I was pretty sure I had - I was blaming it on my own memory loss. Jim eventually started having other symptoms such as difficulty breathing and falling asleep at odd times. These are what prompted us to get a physical and pursue what was going on with Jim. He was never one to nap so that really concerned me. We spent 6 months before we had a correct diagnosis, after several incorrect ones. Jim died at the age of 60 on 10/21/10. He lived 18 months from onset of major symptoms and 11 months from diagnosis. There were periods when there would not be many changes for awhile and then there would be many changes is one or two days. Every person is different. I know this will be a difficult time for you and your family. Please feel free to contact Lori at the CJD Foundation to get my personal email or phone number if you would like to communicate. I am in the Sioux City, Iowa area.
By Jenny on September 4, 2013 - 11:09am
Sorry to hear what you're going through. My advice would be to send your husband's MRI(s) to Dr. Geschwind at UCSF. He was the one (the only one) to correctly diagnose my dad's illness, based solely on MRIs (not seeing him in person). Every CJD case is different. Some are very quick, and others are longer. Sometimes symptoms stabilize/plateau for a few weeks or months.
Best of luck to you and your husband.
By Jeannie Houser on September 3, 2013 - 10:55pm
I'm sure what to tell you even though I have researched CJD for hours. I believe the Spinal Tap will be able to tell them a lot. I hope you're right and it is something other than CJD. Please keep us updated on the foundation's web site. I'm praying for you.
By Arturo S. d.l.C. (Oxnard, CA) on September 3, 2013 - 6:13pm
I am sorry that you and your family have to even think about this disease. My dad succumbed to Sporadic CJD 11 years ago, passing a month after 50th birthday. My dad to was also seen at UCLA in collaboration with the VA hospital. To address your question of the memory loss in respect to the progressive loss in CJD, as I understand it all depends on the accumulation of the Prion protein (CJD's main cause) in the brain. In my dad's case personality changes were apparent before the progressive memory loss. If you would like to stay in touch on a one to one basis, feel free to email Lori at the email address above. take care, God bless...
By Donna on September 3, 2013 - 3:04pm
Hello, this is my first "reaching out" My name is Donna Harvey and we live in Orange County, Ca. My husband is Wes. He is a strong and healthy 79 year old who enjoys his life, our marriage and our kids/grandkids. We have felt very blessed I am 63. About 4 or 5 months ago I started noticing that Wes' was having a short term memory problem. I thought that perhaps he just wasn't actively listening to me The husband wife syndrome and all. When he went to his annual physical in early July he told our doctor "my wife thinks I'm having memory problems." Our doctor asked him "wife's often think that.. :) how do YOU feel about it? Do you think you are having problems?" ...and my husband said yes. The first thing our doc did was to order a brain MRI and some additional blood tests and said we should come back in four weeks to review. On August 6th we both went back and were told that there were abnormalities in the MRI. Hyperintensities. He said he didn't know what it was and referred us to a neurologist at Hoag Hospital We were able to see him in a week , which was very fortuitous He talked with us a long while and then ordered another MRI and an EEG. We saw him a week later and he told us he strongly suspected CJD because of the cortical ribboning in the MRI. Told us he anted us to have a spinal tap and also call UCLA for a 2nd opinion. He said the thing that was puzzling him the most is that my husbands memory loss has not progressed at all in four months and he has not even one of the othe CJD symptoms.
Immediately upon returning home I started to research CJD and was, of course, horrified. It's all we think about. Waiting for symptoms and tests and for UCLA to call us back. Hoping that there is a possibility it could be something else. We had the lumbar puncture this morning and while I was in the waiting room I found your website and started reading your guest book entries. It does not take long to be moved to tears and, of course, I was. I am trying to be in a strong place for my husband but want to reach out to you. I would very much appreciate your input. Especially as to why there is an absence of symptoms other that reasonably mild memory loss. Do you think it was just a very early diagnosis or ?????? I am so frightened but, with that being said, I still want to hear that facts rather than have it candy coated. I thank you so much for anything you give me in any way. I am numb I do not mind my email being given. Donna
By Jeannie Houser on September 3, 2013 - 12:29pm
My brother, as some of you know, is evidently in the latter stage of CJD. It is like he has been sucked out of his body. The reason I'm commenting is back in 1985 my father was treated at the University of Iowa Hospitals in Iowa City for some strange symptoms that he was exibiting. His chart says his symptoms were myoclonus, ataxia and unsteady gait. All symptoms that have occured in the beginning with my brother. My father's record indiciated that his EEG was highly suggestive of CJD. As were his symptoms. They decided to do a brain biopsy because he also had a tumour on his voice box and if his brain biopsy was negative for CJD then they would treat the tumour. If it was negative then they would know to try to treat the cancer. My brother and I went up for the biopsy and only was able to stay until he went to recovery. The next weekend we went back and all of those symptoms (the myoclonus, ataxia and unsteady gait) had disappeared. I can't believe there isn't a connection here. He lived for 3 1/2 years after the biopsy, but he sucumbed to lung cancer. None of his original symptoms came back. Has anyone heard of this happening before? His symptoms definitely did not progress at the rate that my brothers did but I can't help but think there is a connection. Thank you.
By Patricia on August 31, 2013 - 8:05pm
we lost our Mom from this horrible disease July 23, we never heard of it before either, we were shocked and in total disbelief when the dr told us.. We are waiting for the autopsy results.
By Arturo de la Cerda (Oxnard, CA) on August 31, 2013 - 1:21pm
To all newcomers of this guestbook,
I am heartbroken to read that this monstrous has claimed more lives.1 years ago, after a 4.5 battle with sCJD. He passed one month after his 50th birthday. Many of us are apart of a FaceBook group named "CJD Family". This other group gives us another venue to stay in contact the world over. Take care, God bless...
By Barbara on August 31, 2013 - 11:04am
My sister died from this horrible disease this morning. My heart is broken. Not a lottery I wanted her to win. Two months ago I'd never even heard of CJD; now, spongiform encephalopathy and prion diseases are part of my vocabulary. I keep wondering how this happened. I guess the autopsy will tell us more. My heart goes out to all of you with similar stories.
By Daisy on August 31, 2013 - 6:53am
My name is Daisy, I lost my younger sister with sporadic CJD In February 2012 and would like to contact other family members