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By Robert h. on May 23, 2013 - 9:59am
By Kay Foster on May 22, 2013 - 10:48pm
I sent in my story years ago but I think it got lost somewhere. My husband Marvin Foster (age 62) passed away in 2001 of Sporadic CJD. He lived nine months after he was diagnosed. The last five months of his life he could not communicate with us. He had shoulder surgery in 1998 to replace a rotator cuff. He had surgery at Scott & White in Temple, Texas. After a year it was still in pain and he went to the VA. There he was told that Scott & White put in the wrong size ball. They sent him to the Audie Murphy hospital in San Antonio to redo the surgery. When he came out of the surgery he was disoriented and had trouble seeing. He said his vision was off and he was seeing triple. Thinking it was just the medication that had not worn off we thought nothing about it. The doctors tested him before he left the hospital and said he had not had a stroke. Three days after he came home he was rushed to the hospital with a pounding headache. More test on the brain and nothing except that he was anemic. He was admitted in the hospital and give blood because he had lost about two pints which we couldn't understand. They said he was bleeding inside from the wound but it would be ok. We came home and ever day my husband was having me walk with him so he could get his strength back. I had to hold on to him when we walked. But every day he got weaker and had more symptoms like seeing things that weren't there, his strength was going down, his speech was affected and he could not say what he wanted to. He was put in a speech class and it did not help. He went to therapy to learn how to feed himself. He would shake and couldn't hold anything. He wanted to go back to Scott and White so I took him there and after reviewing his records they admitted him and began to run tests. First they tested for diseases that could be cured and then for the ones that could not be cured. They did two spinal taps and each time it came back negative for CJD. Finally they did diagnose him with Sporadic CJD and they told us there was nothing that could be done except put him in a nursing home and let him go. I thought that was really cold. My husband and me were both shocked. I took him home and I quit my job to take care of him. Our children live close and they helped me. He was diagnosed In July and in August he lost his ability to talk and each day he went down. We were provided everything we needed at our home. He was eventually on a feeding tube and in January of 2001 he passed away. There were many trips to the emergency room during this time. When I was taking care of my husband I got on the CJD website and found out what I could about CJD. My husband or I had ever heard of it. I did have an autopsy and I really hated to do that but we had to know the truth. My children were wonderful. They took care of everything to spare me the pain. We found out the hospital did not even report it to the Health Department and we did that ourselves. The hospital said they don't keep track of all the CJD cases but I found out that many people have been diagnosed at that particular hospital. I curse the day I ever found out about this disease. My husband was a Army veteran and he had just retired from the post office. He was going to spend his time fishing and taking care of his garden and his pecan trees. We never got to fulfill our dreams of retirement and doing things we had not had time for before. Our grandchildren were left without a papa who they thought the world of. He was teaching them how to fish. And I lost my soul mate who I had known since we were in first grade. He was a wonderful and loving father and PaPa. Every weekend we would have a fish fry and the yard would be filled with friends and family. Once for his birthday I had a t-shirt made for him with his picture and this really large fish that he caught. He was so proud of it he said "Man Charlie Pack ain't got nothing on me" I think about all he went through when he was in the service and with three tours of Vietnam he came back alive and a killer like CJD had to come along and take his life. I just hope that one day there will be a cure. I don't know that much about the brain but I have thoughts all the time of why don't they try this or that.
By Marcy on May 21, 2013 - 9:52pm
THANK YOU all for taking the time to respond to my post and for sharing your experiences. I will definitely check out Jill Bolte Taylor's video. Your words of encouragement are much appreciated.
By tina carlisle on May 21, 2013 - 2:01pm
Marcy and Maggie,
My heartaches for your mom and your family. My mother was clinically diagnosed in June 2011 and passed away in August. I explained to her after the diagnoses that her brain was very sick. Prior to her becoming sick in January she told me there was something seriously wrong and her time was running out. I asked her if she was ready, she responded yes!! She was tired. She kept saying she didn't know how to explain it but something wasn't right. I know how hard it is wondering when and how long this will gone on. Please don't waste precious time on questions that cannot at this point be answered. I believe my mother knew long before we got the diagnosis. I believe the last few months she knew she was loved by many. We encouraged visits from family and friends, and we encouraged them to tell her in their own way goodbye. We gave all visitors moments alone with her to share their feelings. Though she was unable to communicate back, this allowed loved ones to have their own private moment. Somewhere in Mom she knew. When she took her last breath she was at peace. This chapter in your mother's life is precious along with heartbreaking. Treasure each and every moment, talk with her, sing with her, laugh and cry with her. Someday with luck and much research maybe our questions will be answered until then just love your mother and one another. May God bless you strength and courage as your walk down this path, you are not alone, we all feel your pain and have already experienced much of what you are going through.
By Maryann Forgan on May 21, 2013 - 9:17am
My mother passed away in February from sporadic CJD. I wonder all the time how much she knew what was going on. She was a nurse so I just guess after she was sent home from the last hospital and all the tests she had to go home with hospice she must have known but it it's crazy because it didn't seem like it. I think I was expecting a talk from her about dying and everything would be okay. That never happened. I like to think she was in a good place in her own mind. I don't think she was in much pain most of the time in the beginning but the nurse from hospice made sure she was always comfortable they are special people let them help you there is not enough good things that could be said about them.
Our cousin told us about a video on youtube from a scientist Jill Bolte Taylor's A Stroke of Insight. it is about her own experience of having a stroke and she wrote a book about it. She is a scientist who studies the brain. It helped me understand some things like when my mom kept saying she saw a lot of dots she was seeing things in pixels. I thought she was hallucinating she might have been but I like to think she wasn't. I know the book is about a stroke and not CJD but it seemed to fit since it was happening in her brain just some of the symptoms. Take a minute and watch it when your ready let me know what you think about how she explains some things.
Marcy, I am so sorry to hear about your mom. It's hard to finally get a diagnosis and feel so helpless. There is just not enough time. I do feel like even though my mom could not say much that she understood everything we said to her. There will always be questions in my mind. I think about everything that happened every day and you can't change things as much as you wish you could. Just know you did everything you could and that's okay.
Your family and all the families here are always in my thoughts and prayers. Hopefully someday they will find treatments and a cure.
By Evelyn on May 19, 2013 - 8:15am
Maggie and Marcy...
My husband was 67 when he passed from cjd. From the onset of his symptoms (Memorial day weekend 2010) until his death, August 7, 2010, I, too, could not believe the rapidity of the disease. He went from being asymptomatic, to what they thought was a stroke, to nausea, weakness, dizziness, eye problems, difficulty walking, and ultimately death in just 10 weeks. It seems as though you can't even begin to wrap your head around the diagnosis before they are gone. Others, I know, may linger longer. I knew Tyce would not wanted to have lived with it, so now, looking back, I'm glad God took him quickly. I do not believe, though, that he was not in any physical pain, but I know not being able to communicate was torture for him. I do believe he knew I was there all the time for him, and I always told him if I had to go out and my cousin came over to watch him. It was never for very long, but he always followed me with his eyes.
Know we are here for you. Know that we know what you are going through and you are in many prayers. Just be there for your mom. You are both her advocates and are in charge of giving her the best possible care. God bless.
By Maggie on May 17, 2013 - 8:15am
Thank you very much Evelyn.
I am so glad to have found this blog and hope it can offer some comfort to myself and my family.
Our mother is 65 years old and is struggling with CJD. My sister and I are doing what we can to spend as much time with her and to support my father before he passes.
As has been the case since November, we continue to be stunned at the rapid progression of the disease and how it has taken our mother from us.
I know I will have more questions but for now it is just reassuring to know that someone else understands our pain and sorrow.
By Evelyn on May 17, 2013 - 6:49am
Good Morning, Maggie
You and your sister, Marcy, and your entire family are in my prayers. Please know that WE KNOW and have felt all of your emotions, questions, anger, fear, and disbelief. Please feel free to post here whenever you'd like. You and your family are not alone with this, everyone here had been through what you are going through, and we do understand. Know that God is with you and you are not alone. That's something I didn't believe before my husband got ill with cjd, but I surely do now. Sometimes people are slow answering, probably because it often hurts to relive what you are going through, but we will get back to you. God bless.
By Maggie Mey Tran on May 16, 2013 - 11:56pm
I am Marcy's sister. Our mother was diagnosed on April 28 with sporadic CJD. She is currently in hospice care.
By Kathleen on May 16, 2013 - 8:46pm
You have my total sympathy concerning your Mom and what your family is going through right now. It is very devastating and the questions just never stop coming nor do they always get answers.
My husband was aware that something was going on with him but had no clue what it was or could be. At first it was just "noise" in his head is how he described it. That lead to a diagnosis of sinus infection and/or blood pressure problems. As things progressed and his walking became very unbalanced he was diagnosed with vertigo. He was very lucid and did everything he was told to do and kept all of the doctors appointments but he just didn't get better. He continued to work but read his beloved books less and less and then told me that his vision was giving him problems and he wanted new glasses. The story goes on and on as do almost all of the cjd stories I've heard and read of. The final diagnosis came in July 2009 and at that time he was quite lucid and knew and understood what we were being told. About 6 weeks after that he no longer knew nor understood what was going on with him and couldn't discuss it any more. His personality was changing by then and he wasn't always lucid during that time. He had begun to have hallucinations. He died in January 2010. He lived much longer than many cjd victims and I've been told his type was a little different than most. I don't remember the details of why that was because it was clinical but I do know that I was grateful for the additional time we had together.
You are all in my prayers as are all of the cjd families and their loved ones.
By Evelyn on May 16, 2013 - 7:31am
That's a very difficult question for me to answer. My husband, who passed in 2010, I do believe knew something was wrong. When we would chat and discuss things like, "I hope I'm the one who goes first," he said the last year prior that he didn't think he would live as long as I. When I questioned him on his answer, he couldn't come up with any particular reason, and would often say, "It's just a feeling I have." All during that time I never noticed any change in his personality, actions, or anything else to speak of. However, after his "stroke" which never was, he stopped doing his crosswords, suduko, and reading. I hope that helps answer your question.....
To all who are new to the list, "WELCOME!" I haven't posted much lately....a new puppy takes most of my time, but I have read the posts. Please know that you are all in my prayers for what you are going through. God Bless.
By Arturo (Oxnard, CA) on May 15, 2013 - 1:11pm
I am very sorry to read of your mother diagnosis. My dad passed from Sporadic CJD 11 years ago. 1 month after his 50th birthday, after a 4.5 month battle. From what I remember, my dad knew he was sick most of the time, after the diagnosis. I don't quite recall though that he knew something something was wrong with him prior. We saw symptoms in my dad at least 5 years prior.
Don't be afraid to post back here, you are now part of an extended family that completely empathizes with you. If you have FaceBook account we have created a group called "CJD Family" You and your family are more than welcome to join. Send me a friend request and I will be more than willing to add you. Take care, God bless....
By Marcy on May 15, 2013 - 12:35pm
My mother was finally diagnosed with CJD 2 weeks ago after months of misdiagnosis'. My family first started to see subtle signs last October and by December we knew something was wrong. We were told she had new onset of bipolar, then we were told it was Alzhiemer's, then acute psychotic depression. The last five months have been so terribly hard on my family not knowing what was wrong. My question to everyone is did any of your family members have knowledge that something was wrong with them? When my father confronted my mother back in November with some of the symptoms she was exhibiting she had absolutely no insight that anything was wrong with her. By the time she was diagnosed with CJD (4/27) her comprehension was gone and she has no knowledge of her diagnosis. She currently is home with hospice care and we are watching her slowly fade away. I am curious if others affected with CJD had knowledge of their illness?
By Elaine F on May 14, 2013 - 9:19am
Joel, I have the mutation as well. I am happy to email if you would like. It is a small group that lived through the nightmare of the loss of a loved one and then get the news of the mutation and have to find a way to live with it. Elaine F
By Michael on May 13, 2013 - 2:28pm
The "brain tumor" associated with my great uncle was diagnosed around 1940. His daughter did not ever show symptoms of CJD but his granddaughter who is now 62 years of age has been diagnosed with CJD (Genetic). So, back in the 40's, medical science was not what it is now.So, we speculate that it was really CJD. Obviously in the last 70+ years, great advances. You mentioned an uncle in 07 with a diagnosis of brain tumor. Pretty sure that is the right diagnosis.
By Tamara Johnston on May 11, 2013 - 1:51pm
Joel - I forgot to add, I've found UCSF and the CJD Family group in Facebook to both give great support. UCSF helps answer all my questions. Go to memory.ucsf.edu/CJD. Dr. Geschwind and his team are amazing. I'm also going to the CJD Family Conference for the first time, as I like to connect with others that have the mutation in their family. I do not have the mutation, and when I told my sister in 2008 she said that means she has it. My siblings are too scared to get tested. That's where UCSF helped explain that just because someone has the mutation doesn't mean it will come to life as well, just because one sibling tests negative doesn't mean the other has it as each person has 50/50 chance of getting the mutation. You can reach out to me at anytime as the foundation has my email as well. Take care.
By Tamara Johnston on May 11, 2013 - 1:40pm
I rarely check this site and when I did today I was in disbelief in how many families also have the genetic form in their family. Familial CJD just took my cousin this week, and as well my dad, grandpa and numerous others confirmed with CJD since the fifties, ranging in ages 42-64. Joel, I pray for you. As UCSF told me just because you have the mutation doesn't mean it will come to life. My great uncle is a classic example of that, as he lived a long life into his eighties and we never knew he was a carrier until his child passed. I like some of you have dug into my ancestral lines, for we believe others had it and were misdiagnosed. My dad used to talk about his crazy great aunt, and there are other stories that make you wonder. Michael, you bring up up brain cancer and I never thought of linking the two. This gives me something to go back and discuss with my aunt.
I'm curious, of all these stories about families with the genetic form, are any of us related? My grandpa that passed has 12 siblings and as of today my family is really only connected with three families out of the 13 kids. Is anyone related to Charles Wheeler and Frances Kliber, who were my great grandparents? Anyone's family from Minnesota, Wisconsin or Ohio? UCSF and my family have never been able to trace it back past Charles and Frances, as Charles Wheelers dad, John, was from NY and his whole family line has been untraceable (some say he had changed his name). Frances dad was Ignatius Kliber (as people soundexed names in some records, it was also Klaiber, Klaibur, etc), and her mom was Elizabeth Ostranski. I know I'm not over sharing names as these people have all passed and some of their descendants put our family trees on public genealogy sites. Do any of these names ring a bell for anyone else?
By Nicole Melancon Yawn on May 10, 2013 - 11:46pm
My sister died two years ago from fCJD. Supposedly, she's the first in the family, because we have no other connections to CJD. A previous post from Michael Fitzgerald referenced brain tumors. I have an uncle that died from brain tumors/cancer in '07. This is the first time I've heard of a connection with these two. My dad was supposedly the carrier, although he died with cancer before my sister's diagnosis, so we didn't get a definitive test on him. His brother was the one that died of brain cancer. I have so many questions that remain unanswered.
By Carol on May 10, 2013 - 1:11pm
My sister Barbara, died from genetic CJD 7 years ago today, May 10, at the age of 63. However, her death certificate states she succumbed to septic shock. In any case, she is missed terribly. Our mother passed from genetic CJD in 1979. She was 58. Her sister (my aunt) died from it at the age of 45. Needless to say, I'm terrified to get tested, yet terribly curious about whether I carry the gene, which leaves me in limbo. It feels comforting to share. Thanks...
By Michael on May 10, 2013 - 11:46am
Sorry, I forgot to give you my full name in case you call the Foundation.
It is Michael Fitzgerald.
By Michael on May 10, 2013 - 11:42am
I am in the same boat as you. I have lost my mother, brother, a first cousin. For two years now , I have been tracking my family background and there are probably 2 others that I am pretty sure had CJD and another 2-3 that I suspect. Family historians speak of my great uncles dying from brain tumors or going insane back in the 30's and 40's. Also, I was recently contacted by the husband of a cousin that I never knew I had out in Santa Monica, CA. He tracked me down through other family members. His wife(my cousin) has recently been diagnosed with genetic CJD.
Joel, give me a call if you like. The Foundation has my phone # on record.
Michael, St. Louis
By Robert H on May 10, 2013 - 9:30am
I am very sorry about your family and your new information regarding your mutation. Ask the CJD Foundation for my email. I can provide you with some information you might find very helpful.
By Sue Brunnabend on May 10, 2013 - 2:17am
Wow, your family has been dealt a bad hand of cards. My loving husband just passed on 4/22 from CJD. If you are on FB, there is a wonderful CJD family which is a closed group. There you will read so many stories from people all around, their hardships, anger, stress...and you can vent all you want. May I ask you if I'm not being too nosey...how old are you? I wish you God'd blessings for your future and sure hope this horrific disease passes you over. Ask Lori for my e-mail address if you'd like.
By Joel on May 10, 2013 - 1:27am
Hey everybody I was just looking for support groups for this disease. I've lost so many love ones due to this disease , my mother, uncle, grandma, and my aunt now I've learned that i have the mutated gene. I know sucks huh? How do some of you that have it cope?
By Arturo (Oxnard, CA) on May 9, 2013 - 5:50pm
sorry to read of your moms passing. This is a horrible disease. No one can fathom the audaciousness of this disease. It is our job to raise awareness of this disease like cancer is known today. My dad passed 11 years ago. 1 month after his 50th birthday after a 4.5 moth battle. If you have FaceBook account we have created a group called "CJD Family" You and your family are more than welcome to join. Send me a friend request and I will be more than willing to add you. Take care, God bless....
By Kelly on May 9, 2013 - 12:01am
Here I am 16 months into my mother's passing. My best friend. With Mother's Day coming up I have to believe that God wanted her more than I ever could. I wish I understood and that I could have faith in this horrible disease coming to an end but it lessens the burden on my heart that there are those that understand what I feel. Thank you for allowing me a place to go so that I do not feel alone
By Kathleen on May 3, 2013 - 1:57pm
I am very sorry to hear about your Dad. All the advice and guidance you are getting here on this site is correct and helpful. Take it one day at a time and enjoy every second you have with your Dad. Talk to him, say everything you ever wanted to say, let him know how much you love him and how important he is to you. As for the doctor visit, again, take it one day at a time whatever the doctor advises you to do. In my husband's case, the doctor said to call in hospice and to get some home health care help - which I did almost immediately. It allowed me to keep him at home which is what we both wanted. I was able to be with him every day and hold his hand and feed him when he could no longer feed himself. It was very important to us both for it to be that way. And I do not regret it. But it was a challenge. A care center would have been even more of a challenge for us but I know they do very good work as well and many people choose that. It is a very personal decision for each family. You will be in my prayers as are all of the cjd families and the victims. Stay strong and come back here to the blog as often as you can. It helps an enormous amount!
By Jodi Swenson on May 3, 2013 - 1:27pm
Thank you all for your kind thoughts and advice. Yesterday was a hard day. Not sure what set it off but what I do know is I am sure there are more to come. It is so helpful to me to know there are others out there that I can talk to and will know exactly how I feel and that I can ask questions or just vent to.
I am going to visit my dad tomorrow. I have not seen him for a couple days so while I am excited to see him I am also scared what others changes have happened in that short time. His speech is starting to slur and the thought of him not being able to talk to me is breaking my heart. We also go to meet with the Dr's at the hospital on Wed next week to discuss his care plan so if there is anything that I should be asking or requesting I would love any suggestions. Thanks Again to all!!!
By tina carlisle on May 2, 2013 - 11:01pm
There are no words that will ease your aching heart. My heart aches for you, your family and your father. My mom passed away in Aug 2011. Keeping a glimmer of hope is very natural, I did the same thing. All the emotions you are feeling are also typical and normal. These feelings come from love and because we love we feel pain and heartache. The most important thing you can do now is to treasure each and every moment. Talk with an open heart, do not let anything go unsaid, get up in the bed with your dad, he will feel your closeness, knowing he is not alone. Sing to him, read to him, and as you care for him you will find strength you didn't know existed in you. Do not ponder what will happen next, in life we do not know what tommorrow will bring , the same goes for CJD. Live for the moment, the mystery will reveal itself day by day. Please feel free to contact Lori for my email and phone number. There is one thing you can count on right now, you are not alone in this journey, I am free to talk night or day. I will answer any questions as honestly and openly as I can. You may also request me as a friend on facebook. Another great outlet with families going through what your are, you are free to vent, ask questions and just know many others have suffered the same heartache you are enduring. The site is CJD Family. It is a closed site. so just friend request. I will keep you and your family in my prayers and you now hold a special place in my heart. May God give you strength, and through His love may you find comfort.