Guestbook

http://www.edprices4u.com/ ordering viagra 6818 http://www.anystatecarinsurance.com/ classic car insurance vwhhuf http://www.yourcarinsurancequotes.net/alabama-car-insurance-quotes.html car insurance quotes Alabama 191 http://www.anystatecarinsurance.com/cheap-car-insurance-FL.html cheap car insurance Florida 57336 http://www.topinsurdealsonline.com/ car insurance quotes zczogb http://www.shopforedtabs.com/ viagra =-]]

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.

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.

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.

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.

Marcy:

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.

Marcy:

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....

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

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.

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.

Joel,
Sorry, I forgot to give you my full name in case you call the Foundation.
It is Michael Fitzgerald.

Joel,

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.
Robert H.
Olney MD

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?

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

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!!!