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By Don Prouty on September 16, 2014 - 10:57pm
Sorry to hear that Pam. It does seem like there are little changes every day. The people I have talked to about this disease have all had some similarities but also they all had slightly different ones too. Know that he will always know you are there. My mother had the some of the same symptoms as your husband is having. I lost her 2 years ago to this horrific disease. I would go by every day and see her. She would always say where have you been and I would have just left the room for 5 minutes. She did reach a point that she would just look at me and smile when she reached a point to where she couldn't talk anymore. Thank god for people like the cjd foundation offering support. They are always here and a lot of other people to talk to you about this when you need to that are going thru or have been thru what you are feeling. Prayers are with you and your family.
By Don Prouty on September 16, 2014 - 10:38pm
2 years since my mothers passing from cjd. It was very hard watching her imagine the doctors trying to hurt her,drown her,etc. it seems like yesterday. Diagnosed at the university of Maryland.
By Pam on September 14, 2014 - 9:40am
Patrice, your husband sounds very similar to mine. He was diagnosed June 27, 2014 at the age of 45. He started forgetting things in late March, but had other, more subtle symptoms that started in December, maybe even before that, such as irritability, change in personality, etc. I thought that he may have been depressed, or suffering the effects from insomnia, because he had a very hard time sleeping for over a year before all of this. He is now confused all of the time. He doesn't recognize his own house. Sometimes he has trouble recognizing me or our 2 daughters, but that's pretty rare, for now. He also has maintained his sense of humor, and laughs a lot. He doesn't really know what's happening to him. He's in a wheelchair now too because of imbalance and unsteadiness. He is still at home and receives care from hospice a few days a week with showering, etc. He gets anxious and restless in the evenings. He says he wants to go home, even though we are home. Those times are rough. He can still talk, laugh and joke sometimes, although his speech is getting more difficult to understand. He whispers a lot, or mumbles, so he's hard to hear or understand much of the time, and a lot of what he says is nonsense. I have been trying to find more information about what to expect next. It seems like things change a little bit every day. Good luck to you. This path that we're on is a difficult and painful journey. Prayers for peace and mercy to you and your husband.
By Jenny on September 11, 2014 - 3:53pm
Welcome, Patrice (although I know this is not a welcome place to find yourself). I'm sorry to hear of your husband's suspected diagnosis. There are always similarities and differences amongst all the CJD cases I hear about. Like your husband, my dad's sense of humor was one of the last things to go. We all enjoyed his humor, his laugh and joking around as long as he could, although they got a little "off" from his norm as time went on. My dad passed several days after he lost the ability to talk (and thus, joke). As I tell others on here, please be sure to leave nothing unsaid. Peace to you.
By Daisy on September 10, 2014 - 7:25pm
I have been reading through the sadness,albeit I don't know any of you. Having lost my beautiful and only sister from this cruel disease in jan 2021 , my heart aches with every line I read.I pray I wish and I hope that your outcomes give you time to let your loved ones know how important they are,have been and will continue to live on within you forever.God bless you all .
By Arturo de la Cerda on September 10, 2014 - 12:44pm
Good morning Patrice,
I am sorry to read of your husband's diagnosis. This disease is often regarded as "The great mimicker", by the medical community. My dad passed away twelve years ago. He courageously battled this disease for 4.5 months passing one month after his 48 birthday.If you would like to keep in touch with a family on a one-to-one basis, Feel free to email Lori (at the address above this page). She will be more than willing to relinquish my contact information. Take care, God bless...
By Patrice West on September 10, 2014 - 10:52am
My husband has had CJD since February 2014 and was initially diagnosed with vascular dementia. He received the cjd diagnosis a month ago. He is in a care facility now. His cognition is almost gone and he is now in a wheelchair because of his unsteady gait. Mostly he talks nonsense. He does still recognize me but usually cannot remember that I have visited with him just the day before. He still has his great sense of humor which is a great comfort to me to still see him laugh and joke around. He knows something has happened to him but he does not know what.
By nora on September 10, 2014 - 3:49am
To Diane, After reading your comment about how many others are in the dormant stage, a walking time bomb, it reminded me of a youtube video by Colm Kelleher titled 'Brain Trust' do check it out I think you may find the answers to some of your questions. There are also many families asking the same questions, many from the USA.
By Diane on September 9, 2014 - 4:09pm
Bobbie - I would love for my sister in law to talk to you. She is in rare need for support for a variety of reasons. I will email Lori (moderator) my email address.
Lori (moderator) 0 can you either message me Bobbie's information, or give her my private info?
Thank you so very, very much.
How can this disease be 1:1 million when so many people I know seem to know someone who has it currently?? How many others are in the dormant stage, a walking time bomb??
By Bobbie on September 8, 2014 - 2:08pm
Thank you for sharing the links to your almost-brother in law's beautifully written articles from his fellow colleagues. My husband has followed his writings for several years and was astonished when we heard of this. It hits home, not only because we are Wisconsin-ites and Badger fans but also because I lost my father a little over 3 years ago to sporadic CJD at the age of 51. I just wanted to offer any 1 on 1 support if you need. I also want to mention Jeanne Drunkenmiller (sp?) who works for the WI state health department who was a very helpful resource specifically. I am in the healthcare field (nurse practitioner) and took care of my father during his last 6 week and am always open to questions!
By Janet on September 7, 2014 - 3:50pm
Jenny, thank you so much. I hear you. Continuing to pray for strength for all victims and loved ones on this message board.
By Arturo on September 7, 2014 - 12:51pm
Sorry to read of your step father's diagnosis. Dealing with the search for a correct diagnosis, you've never wished for a diagnosis of cancer so bad in your life My dad died 12 years ago from sCJD. He battled this monstrous disease courageously for 4.5 months, passing one month after his 48th birthday. This disease creates nightmares for both our loved ones as well as us, just know you are part of a CJD Family that expands the world over. If you would like to keep in touch with me on a one basis, 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 Diane on September 6, 2014 - 11:57pm
Another article on Tom Mulhern, a victim of CJD. Let's get the word out.....share these articles please! We need research monies to find a cure!!! http://journaltimes.com/sports/college/football/tom-oates-football-with-... I am hoping that Tom's senseless and cruel diagnosis of CJD two weeks ago helps the cause of CJD awareness and research.
By Diane on September 6, 2014 - 11:17pm
Let's hope some of the articles on a new member to the "club" get people noticing. Tom is a magnificent sportswriter redeemed all over Wisconsin for his coverage of the Badgers and formerly Packers. Get ready to cry. Let's hope this helps raise funding for research!!! http://www.espnwisconsin.com/common/page.php?feed=2&id=15771&is_corp=1
By Melissa on September 6, 2014 - 6:17pm
Hello - my stepfather has recently been diagnosed with this awful disease. I noticed he was "off" in February. After months of watching him decline in his cognitive skills I had to do something. I contacted his family and finally we were able to get him to agree to see a neurologist (about 1 month now since all the tests). After many tests and praying it could be something treatable like a stroke, tumor anything else the dr. and colleagues agreed it was CJD. Even with a second opinion we have now come to terms that this is what were are faced with. Our nightmare has just begun and his as well. He does not know his diagnosis yet and trying to determine if it is really necessary to even tell him. Would I want to know this...know I have a fatal brain disease? It is so hard. I'm still in shock and hoping and praying that this is not his reality. Hoping for a miracle.
By Jenny on September 5, 2014 - 5:09pm
Annie and Carolyn~ I am very sorry to hear about your dads' passing. Like both of you, I lost my dad to this dreadful disease. It's an absolute awful thing to watch a loved one go through this, and so difficult on the family members. My sympathies are with you. I encourage both of you (or another family member) to fill out the CJD Foundation questionnaire. The results are tabulated to keep track of statistics, as well as similarities, etc. that patients have in common. So little is known about this disease; it's one small way to possibly contribute to knowledge about it, and maybe eventually a cure.
Janet~I'm sorry to hear about your sister-in-law. Like I wrote above, it's an absolutely awful thing to have to watch. You have the support of everyone on this board. We know what you're going through. My only advice, to add to what you wrote below, is to make sure nothing gets left unsaid. Peace.
By Janet on September 4, 2014 - 2:25pm
First, may I say how my heart breaks for each and every one of you and your loved ones experiencing the effects of this dreadful disease. I had stumbled upon Jacob's disease while researching other symptoms for myself and my daughter years ago online, but just recently have become too familiar with it as my brother's wife is dealing with the classic CJD.
In February her adult children took her to a neurologist thinking she may have suffered a stroke due to affected gait, balance and memory issues which suddenly took hold. There was no evidence of such. Always active and vital to the lives of her husband, children, grandchildren and the community, she continued working until early July when it became clearly evident to those around her she was not functioning normally. Under serious financial stress and constant worrying about her husband's health, while CJD was mentioned, so was a nervous breakdown a possibility. Obviously, we were hoping and praying for the latter. She commenced p/t and o/t w/various other tests and appointments. For a brief week or two, we saw hope. Her weak voice seemed to be coming back and she seemed determined to lick the fatigue and walking issues, but there were too many symptoms that were undeniable. She had always been the caregiver and now my spoiled, but loving brother found himself unable to leave her side no matter where she was. She could not walk alone, nor sleep alone. Like sundowner's for Alzheimer patients, evenings until morning were the worst, making it impossible for others to fathom his claims. Medicated to sleep, she still found no comfort, would experience tremors, spasms and incontinence throughout the night. There were times he had to shower her more than twice in an evening and finally into the day. She has always been strong and proud and I believe desperately tried to muster up being lucid around her children and others during the day including her doctors. She was sadly aware though that she was not right. She too complained of her cough which she couldn't shake. While waiting for weeks to pass to compare tests, without a more definite diagnosis, we all came to understand this was the dreaded disease we learned of. A few weeks ago she fell off of her bed fractured her hip and had to have surgery. She is now in a rehab and her next stop is most likely hospice. Her children and family are processing all of this with great love but difficulty. She thinks she is at home and the hallway is her kitchen and she cries out so many loved ones names. She will be responsive, then vacantly stare and her hands dance through the air. She says she knows she is dying, but my brother tells her it's the medications and then she forgets for awhile. She has asked him to help her end it, but he placates her, then steps away so she cannot see him crying like a baby. For the longest time she would dream of and ask for her cats (she has never been without at least four at a time), but she no longer even speaks of them. She is rapidly deteriorating in all aspects and I can only pray for her sake and her loved ones that it ends sooner than later. She was there for both of my parents through the good and the bad and had my mother not suffered from trigeminal neuralgia, (another little known of disease with horrifying symptoms), I, personally would not be able to accept this. At age 64, (which seems to be right on the mark w/classic CJD prediction), it is way too early to have to say goodbye. I cannot imagine watching, living or accepting this at the younger ages of so many victims. Today I am taking my 21 and 16 yr. old sons to see her. It will perhaps be the last time they see her. My oldest boy is like a third son to her as she watched him daily from birth to kindergarten while I worked. I wonder if she will recognize them today and I wonder how the boys will be affected. I cry inside and out. I cannot imagine what my brother is going through, they have been together since they were 16 yrs. old. Married close to 50 years. Always young at heart and adding to the quality of life for so many others. I have known and loved her since I was nine years old. She was my sister from another mother. We've shared families and memories that have made me so much of who I am. She was the first person to put make up on me in fifth grade and I shared many private experiences with her to which she offered sound advice. She taught me about cooking and crafts and babies and so much more that only she could have done. Most importantly, I am grateful to her for loving my brother and taking such great care of him and sharing her beautiful children and grandchildren with us. I will miss her deeply and regret that we could not have more time as we both were about to have more of together, so I thought. Soon I will try to comfort her whether she understands or not by reminding her of the loved ones we've watched pass and how we will someday be reunited. That is what I would want to hear. God bless all of you in your heartbreaking moments of this mysterious life. Hold on tightly to your good memories. Our loved ones would want that of us. Email through Lori if desired. Prayers from Buffalo, NY.
By Arturo on September 4, 2014 - 12:24pm
I'm sorry to read of your dad's passing. My dad passed 12 years ago from CJD. His symptoms were subtle too. My dad's symptoms spanned across 10 years prior to diagnosis. He would forget where he was and lost his sense of direction, as well as having sudden anger outburst and balance issues. If you would like to keep in touch with me, 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 Arturo on September 4, 2014 - 12:12pm
I'm sorry to read of your dad's passing. The disease is cruel and unforgiving. Having to watch a parent die is very heart wrenching, no matter what age. I was 12 when my dad battled CJD. He ultimately lost that battle after 4.5 months. Now at 24 I am a staunch advocate for CJD and Prion disease awareness. Surprisingly, many kids at my college are behind my efforts. If you would like to keep in touch with me, feel free to email Lori (at the address above the page). Take care, God bless...
By Carolyn Cekander on September 4, 2014 - 9:42am
My smart, kind, beloved father passed away August 27 of this year from sporadic CJD one month to the day after his diagnosis and discharge from the University of Michigan Medical Center. They provided us with a name; CJD and not much else. The next day upon reading his discharge paperwork my Mom read "death is likely but not certain within a period of a few weeks".
The first signs were subtle. Forgetting what he was going to say in the middle of a sentence, asking for help with directions. We can trace these back to late March. He had the cough others have mentioned. The first alarming symptom was July 3 when he forgot how to attach the swiffer pad. He forgot how to cook an egg the next day. He went to the local emergency room on 7/5 but refused an EEG and MRI. His symptoms worsened daily. On July 24 we had a follow up appointment with the local neurologist who suspected CJD. Knowing we did not have months to wait to wait for an appointment at U of M he sent us directly to the U of M emergency room.
It was heartbreaking to watch his daily decline, confusion and emotional distress. He handled it with utmost grace and dignity.
His death certificate lists CJD as cause of death. I'm glad he got "credit" for suffering from it.
Ok to contact me through Lori.
By Annie on September 4, 2014 - 1:31am
My dad passed away a couple of weeks ago, and it is all still surreal. He was sick for awhile with some infections, and when he didn't get better, they ran test over test over test, more than 500 tests on him and when everything came back clear, they told us they suspected CJD. Within a matter of two weeks prior to them telling us he may have CJD, he had bagan to speak less.My dad passed away about 5 days after they informed us of this. At that point, he was already in a coma. We never got to say goodbye. His disease was very rapid, which we believe to be because his immune system was so suppressed from all the antibiotics from his infections. I'm only 24 years old, and my heart breaks everyday that I don't see his face or hear his voice. You never realize how important your dad is until he isn't there anymore. He was supposed to do all these things with me that dads do, and I know I have brothers but they will never be my dad. People keep telling me it's going to get easier, but I just feel like it won't. I miss everything, the good and even the bad. I keep waiting for him to come home.
By LJPerry on September 1, 2014 - 7:52pm
I would like to thank those of you who responded to my August 3 post. Since then we have sent my husbands records and tests to the National Prion Disease pathology Surveillance Center in Cleveland. They sent them to Milan, Italy and the results were probable Sporadic CJD. Dr. Appleby in Cleveland is willing to let my husbands physician consult him so we don't have to travel so far. Also, we were told that they never want to do brain biopsies on someone they suspect has CJD. He is sick and it is too invasive. We are glad that it isn't genetic but not happy that it is CJD. He has the longer lasting kind because it has been 2 years & 3 months since the first symptoms which came on suddenly. I hope Tambrau reads this and sends her mother-in-laws tests to Cleveland.
By Tracy on August 29, 2014 - 10:24am
Dear Jenny - People have actually made donations to the CJD foundation in her memory.
Dear Judy - Is your daugher able to still talk and have communications? I have to say that was the hardest part as I think there were things my cousin wanted to say but the day she lost her ability to talk, that devastating. I would just have her kids talk to her and share things that will not be able to be shared when she is gone. Also we have a place here in Pittsburgh called the Caring Place which is a place for families to go and go through a healing process with other families of similar circumstances. I would suggest that. Another unfortunate thing is that health coverage will not cover anything like that until a death has occured......something else that I think needs to be changed as I think the families need help during the illness phase as well.
Dear Arturo - Thank you very much and I will make sure to pass along your message to my cousin's family as well. We just ordered those bracelets as well. God Bless you too!
My thoughs are reamain strong, cry and get your feeling out, hug alot, laugh alot and make sure to tell each other how much you love each other each and every day. I cry almost every day as she was like a sister to me (I don't have any siblings), again, so hard to believe she is gone at the age of 45, we had so many more memories to make together with our kids and all her siblings and all of our family.
By nora on August 29, 2014 - 4:44am
To Judy, When I read your story it made me very sad, your daughter is so young at only 37 to have this terrible disease. Do the specialists know what caused this, why she developed it at such a young age? Here in the UK many young people have developed vCJD, a friend of mine has a friend who is just 28 years of age and dying from vCJD they don't know how much longer he has to live.
By Judy on August 29, 2014 - 12:23am
Tracy , I'm so sorry you had to experience what we are going through now . My daughter , Abbey has sCJD and she is only 37 . She has 2 sons . One is 13 and the other is 16 . Besides my own heart breaking everyday .i look at my grandsons and son- in - law and they are all so stoic . That really scares me for the boys. She has been kind of not herself since around Feb. , the day after Mother's Day she was admitted to the hospital. Everything has occurred so rapidly . I think my youngest is in denial ,he is his Momma's baby .he will even get up in the hospital bed with her . She is home with Hospice . It's just all too much . If you have any advice for how Ishould deal or not deal with the boys I would like to hear it . Thanks so much for listening , hummmm reading . I have to keep some sense of humor or it would be all over ! JudyMd
By Jenny on August 27, 2014 - 5:56pm
Welcome, lp. Not such a great place to be, but I'm glad you found this guestbook as a place of support. I'm sorry about your mom. Like you, I was a lurker on this board for a long time before posting. Did you fill out the CJD Foundation questionnaire on behalf of your mom? It's available on the website, if you haven't done it yet. It's a great way to keep track of statistics, events, symptoms, etc. that can one day hopefully contribute to research about this disease.
Lee Anne--What CJD group did you contribute to for the ice bucket challenge? I've thought of doing the same thing.
Tracy--Sorry to hear about your cousin. As all of us on this board know, we're dealing with a monster of a disease. Same question for you as Lee Anne: what group did you contribute to for the ice bucket challenge? Again, curious, as I've thought about doing the same thing.
By Arturo on August 27, 2014 - 12:07pm
I'm sorry to read of your cousin's passing This disease is truly monstrous, having to watch see your loved one suffer through, let alone being a kid having to help for as they watch their parent slowly disappear. I was 12 when my dad died from sCJD. He courageously fought this disease for 4.5 months, eventually loosing the battle one month after his 48th birthday. Since my dad's passing I have been advocating for Prion disease and CJD awareness. Now in college I tell everybody I know about CJD and wear the Foundations purple "CURE CJD" silicon bracelet (available in the store tab above) everyday and make it a point to make sure the inscription is faced upward. 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 this page). Lori will be more than willing to relinquish my contact information. Take care, God bless...
By Tracy on August 26, 2014 - 3:28pm
My cousin Renee passed away from CJD on July 25. It was one month to the date yesterday she passed away, the day when her two beautiful daughters started back to school - one obstacle of many that they will have to overcome in their lives. It is just so hard to believe that my 45 year old cousin is gone. This disease is horrible. It hits hard and fast and strips people of their livelyhood. Several family members of ours were nominated for the ALS ice bucket challegne, which we in turn changed it to the CJD ice bucket challenge. Many people have contributed in memory of my beautiful cousin Renee. Keep the challenge going and remember to call it the CJD ice bucket challenge. We are all on a mission to raise awareness of this disease and to raise money. Love and miss you more than you know Renee! <3
By LeeAnne on August 25, 2014 - 11:54pm
I am 25 and am posting to say that I was recently nominated on FaceBook to do the Ice Bucket challenge for ALS. I would just like to say that I will be going through with it but doing it for the Grandfather I was never able to meet and for my aunt who is slowly/quickly going away because of this illness. Along with for myself and the rest of my family who also have the chance to go from this.