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By Arturo on September 7, 2014 - 11:51am
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 - 10:57pm
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 - 10:17pm
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 - 5:17pm
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 - 4:09pm
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 - 1:25pm
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 - 11:24am
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 - 11:12am
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 - 8:42am
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 - 12:31am
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 - 6:52pm
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 - 9:24am
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 - 3:44am
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 28, 2014 - 11:23pm
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 - 4:56pm
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 - 11:07am
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 - 2:28pm
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 - 10:54pm
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.
By lp on August 25, 2014 - 3:23pm
Hi. Been reading these posts for a year since my mom was diagnosed with sporadic cjd. She finally passed away on 7-31-14.. wanted to know if anyone in the south florida area has a family member or friend that has been diagnosed. To all of you who have a loved one suffering right now with this monster, I pray for you and your loved one. It is not going to be an easy road for you, but your loved one will eventually have peace and so will you knowing that you did all you could to help them. Whether in the south florida area or not, maybe we can band together and start a fundraiser like the people did for ALS with the ice bucket challenge. they raised 50 million and ALS is not as rarer or deadlier then CJD.. maybe someone has a great idea out there.. hope we can all put our heads together.. im glad I finally had the courage to post today instead of all the months I spent reading your comments. Thank you to all have posted comments in the past, they really helped me through this nightmare.
By Arturo on August 24, 2014 - 11:48am
Yes Diane, by all means you or your sister-in-law cal email Lori. She will be more than willing to relinquish my contact info. Take care, God blesss...
By Diane on August 23, 2014 - 8:40pm
Thank you Jenny and Arturo. Ive ordered two copies of both hooks. One for my sister in law and one for our family to read.
Not sure of the tests, but after many days at UW Madison, his docs have said unanimously that it's CJD.
I will absolutely share this page with my sister in law (Laurie). So, if you see her post, please know that she's in the stage of just finding out that the love of her life has CJD.
I am going to try to get her to connect to a few of you 1-1 if that's okay.
Thank God for this page..... There just is not support for this terrible disease.
By Jenny on August 23, 2014 - 5:15pm
Diane~ Sorry to hear of your brother in law's diagnosis. What tests has he had done? There are many diseases that mimic CJD. Until those are ruled out, it's difficult to know. But if he, and you, are indeed dealing with CJD, the book that was most helpful to myself and my family was actually not about CJD at all. It's called Final Gifts, about how the dying are about to communicate. My family and I picked up on several things that my dad said, or was trying to say, or needed, that we feel we would've missed out on, had we not read it. Another book is The 36-Hour Day, about being a caregiver. As far as support, this guestbook has been a great source of support; and I did a ton of research online. Please check back in here.
By Arturo on August 23, 2014 - 12:52pm
I'm sorry to read of your brother in law's diagnosis, this disease strikes without warning and it is very heart wrenching see our loved ones suffer this way. My dad passed away 12 years ago from sCJD. He courageously fought this 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 at the address above. Lori will be more than willing to relinquish my contact information. Take care, God bless...
By Diane on August 23, 2014 - 11:57am
Hello all, I'm very new to the CJD "family". My (almost) brother in law was diagnosed this past week. Since we learned of his diagnosis, I'm trying in vain to learn about progression, cause, heredity and, most importantly, support for his (almost) wife and kids. I'm sick knowing what is coming. For those of you that lost a spouse/child/sibling to this, my heart aches for you. Please help me help his family..... What books are there? Everything I'm finding on Amazon seems to be more informational than support. To those directly affected: what did you most need from fringe family members? My spouse and I want to help, but are at a loss for what to do. Thank you for letting me have a voice to ask questions, and please provide feedback on the books and helpful things to do. God bless all of you.
By Daisy on August 23, 2014 - 10:27am
I am in Australia,and feel,very lucky that palliative care is offered under our health care system.Since the passing of my sister,I have read extensively ...well as much as is available re this shocking disease.I am still working full time and have had palliative care training.I realise that every case is different,however neurologically ,the symptoms stand out ,My sisters pain had no obvious pathology behind it,as she was a very fit young woman and had no history of back problems,yet the pain was very real and clinically I could see that.It was explained to me at the time, that the prions misfold at different rates and in different areas,so for her it was very real and I was able to treat accordingly.As an RN Of approx 30 years,I have never seen a disease as rapid in decline. Each day was a new decline. She passed seven weeks after clinical diagnosis, and I still reel at the speed of the disease. All aspects were able to be controlled,ie the myclonus the pain the incontinence etc.Actually she woke one morning approx 5 weeks before she passed and was unable to void.The retention resulted in an IDC which for her dignity and management I found it to be the best anyway. Dementia became very evident after four weeks,she had lost all insight and was confused and disorientated to time,and specific place.She displayed windows of reality,but they were minimal and after another week,she was fully dependant on us for all care.This disease is insidious and relentless.I guess I just flew into nurse mode and tried to stay focused on her comfort.I wish I could jump the miles between is and be your helper. I praythat comfort will be found.Look after yourself.God bless.
By Chris on August 23, 2014 - 10:11am
I’m so sorry to hear about Abbey. I saw that you mentioned she had hit her head, and Daisy and Kathy also mentioned head trauma. My Laura seriously hit her head about 4 months before her diagnosis. It was on a hiking trail we’d done more than 300 times because it’s across the street from where we live. This was our first hike of the year, and we were not expecting a tree that had fallen across the path diagonally. Laura did not duck low enough to pass under it, and hit her head very intensely; she rebounded onto her back. Later I read that the RT-QuIC test for CJD shakes the prions in order to get them to activate to the point of detection. Reading this made me wonder if that was what happened to Laura when she hit her head.
Your observation, “Unless you’re living it you have no idea how horrific this disease is” rings very true. And for me, it got worse after the end when “outsiders” have no idea what you have just lived through. As I read more and more about CJD throughout these 5 weeks since my wife succumbed, I see the disease referred to with phrases like “the most horrible disease known to mankind” or “you’ve walked through Hell if you’ve watched a loved one die of CJD” and variations on those themes. People have no idea!
So, I ask them to imagine watching the love of their life, their soulmate, or parent or child, with her (or his) brain having holes eaten into it right in front of them, thousands of memories gone forever with each new hole, and there’s nothing you can do about it even though you had vowed to protect her, to lay down your life for her. And at the same time, the disease is causing neurons to fire in ways that were never intended by the creator, that are outside the scope of nature; causing muscles to painfully twist, contract, and tense to the point at which you fear her precious bones will break, as they force your beloved into postures that are beyond even your most terrifying nightmares. And this goes on for day after day after day.
I’ve seen several grief counselors since Laura died. One said to me, “I know what you’re going through; I had a brother die prematurely of leukemia; I had only seen him a couple times in the past 20 years, and I probably would have only seen him a couple times in the next 20 years, but I know what you’re going through.” I wanted to scream, “No you do not!” But that would have been disrespectful, so I just nodded.
(Lori has my email)
By Judy Ellington on August 22, 2014 - 11:00pm
I have to address Jessica's post ; girl I've felt the same way !! I have even gone as far as sending some notices to some of the country singers ! Unfortunately no response . My daughter , Abbey was diagnosed just after Mother's Day . She lost almost all her motor skills and speech in a matter of a couple of weeks . Unless your living it you have no idea how horrific this disease is . My Abbey is only 37 years old , just turned 37 . She has a great husband and 2 teenage sons , 13 and 16 !
And Pam , I'm sorry you are having so much trouble finding help . I really thought that Hospice would take just about all insurances. I so hope you get some help soon , it is very hard , I know . Emotionally and physically . Sometimes she starts to cry and then it's all over for me . Some times I think she is aware ,but am not sure .But I know for sure that she is aware when she hears her husband , or senses him, it is a true love that they share . She also changes moods when she hears her sons . We can't give up the fight , a cure has to be found ! We have to rally and get some funding ! I hope we all have a calm , blessed night .
By Pam on August 22, 2014 - 8:51pm
Thank you so much for responding. Our insurance company will not cover palliative care or personal care attendant services. So far I have been the sole care taker, with occasional assistance from family and friends. My In-laws are basically moving in with us this weekend, so that should be a big help. He goes to see his neurologist on Wednesday. I'm wondering if I should ask for hospice care since our insurance does cover hospice care. I'm an RN too, but haven't actively worked for several years to be a stay at home mom for our daughters. When you say to contact the CJD support network, do you mean this CJD foundation? My husband seems to have more trouble with walking everyday, and is very uncoordinated, and has very poor motor control. He is also very unaware of his surroundings. He doesn't recognize that he's in his own home. So far he has not complained of any pain, which I'm very thankful for. Thank you for your advice. I will be in touch. ~ Pam
By Arturo on August 22, 2014 - 8:37pm
Yes my dad had all the symptoms of the typical flu (soar throat runny nose ect). These symptoms were three to four years prior to diagnosis.
By Daisy on August 22, 2014 - 7:26pm
my heart goes out to you at this very difficult time. I lost my younger sister in Jan 2012 from autopsy confirmed sporadic CJD.The symptoms you have described are almost identical to what we experienced.She lost the use of her legs very soon after what you have written. Her cognitive abilities rapidly declined after this.she experienced a lot of pain in her back and lost all power in her L arm. I was fortunate enough to have a wonderful palliative care support.I am a registered nurse and they were very supportive,letting me take control of her analgesia.They also visited second daily and were available on the phone.Coordination in all her limbs was very evident.We were having to feed her meals and fluids She required full care with all personal hygiene also.I wished I had kept a diary so I could help with a timeframe, but was too distracted and still hoping things would improve.Please try and gather support from palliative services and the CJD. support network as they were able to confirm her decline when I phoned them.She lost awareness of her immediate surroundings, but always knew who we were.She began to sleep a lot.I hope you have family who can help you with the physical aspect of this terrible time.We played music she liked and DVDS she had enjoyed when she was awake.We also kept the environment as quiet as we could as the startle reflex associated with this disease became very evident.I hope this has helped and I am available via email if needed.Look after yourself.let him know constantly that you love him...as I can see you do...God bless