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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.
By lp on August 25, 2014 - 4:23pm
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 - 12:48pm
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 - 9:40pm
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 - 6:15pm
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 - 1:52pm
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 - 12:57pm
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 - 11:27am
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 - 11:11am
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 23, 2014 - 12:00am
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 - 9:51pm
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 - 9:37pm
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 - 8:26pm
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
By Jennie on August 22, 2014 - 5:42am
Did he have a fever too? or was it only a runny nose and painful throat and things like that?
By Jessica on August 22, 2014 - 4:13am
Seeing all the ALS Ice bucket challenges make me feel hopeful that we can start a fundraising campaign and have it go viral. I feel so guilty because every ice bucket challenge I watch I get upset that its not raising awareness/donations for CJD. It's been a few months now since I've lost my dad (5/19/14) and it's not really getting any easier. Everything I do makes me think of him.
I am curious if there are any other people going through this in California? We just received the autopsy results saying it was sCJD, not that it really helps to determine how he contracted this disease. I am wondering if his hand surgery might have had anything to do with it? He was perfectly healthy in November and soon after his surgery he changed, coincidence? Also, he had lung surgery the year before, and multiple oral extractions, could any of this be related? Please get my email from Lori if there is anything you want to share with me, or if you need someone to talk to about this.
I took care of my dad every day from the day I got back from my honeymoon to his very last breath. If I can give any advice to anyone going through this, if you can please please take care of your loved one yourself (or keep them at home) I know it's a lot of work but it is so worth it in the end to know that you cared for them up to the end. Also, please contact hospice asap! We had VITAS and they were amazing. Last, but not least, don't forget about yourself. It's much easier said than done, but it is so important. You can't take care of anyone else if you're not taking care of yourself.
By Arturo on August 21, 2014 - 7:17pm
We too thought it was just the regular flu, that was bad enough to have him take weeks off from a new job we moved for. Shortly after my dad's diagnosis we learned that flu like symptoms were the first signs of the disease. We've lerned this from talking to other families and reading latest research findings.
By Jennie on August 21, 2014 - 1:21pm
About the cough and flu like symptoms, how do you know they are related to the cjd and were not just a regular flu? Did they last for a very long time?
By Arturo on August 21, 2014 - 12:04pm
I am sorry to read of your husband's diagnosis. This truly a haunting and cruel disease. My dad passed away 12 years ago from sCJD. He courageously fought this disease for a 4.5 months before passing a months after his 48th. birthday. Unfortunately, with this disease the course of symptoms vary on a case to case basis. A persistent cough and flu like symptoms are shortly seen symptoms of the disease. With my dad, the cough and flu like symptoms were symptoms we saw a year earlier before the dominant symptoms and diagnosis. If you would like keeping in touch with a family on a one to 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, and remember we are all in this together...
By Pam on August 20, 2014 - 8:59pm
One thing I forgot to mention is that my husband has also had a persistent cough since early May. I noticed some others have mentioned a cough, too. Is that a common symptom? No type of cough medicine seems to work for it either.
By Pam on August 20, 2014 - 8:07pm
My husband was diagnosed with probable CJD on June 27, 2014. In December he began feeling dizzy/lightheaded, and had horrible insomnia and violent dreams at night. In January, he started having numbness & tingling in his feet. I also noticed a slight change in his personality such as irritability, inability to handle stressful situations well, and loss of interest in his usual hobbies, etc. These symptoms persisted steadily until late March/early April when he began forgetting things. In late April it got bad.enough that I convinced him to go to the Dr. and to take time off of work. His other symptoms at that time were: sensitivity to noise & light, muscle twitches/jerking, easily startled, profound fatigue, tremors, unsteadiness when walking, and forgetfulness. All of those symptoms persisted, as his memory continued to worsen. He developed hallucinations/delusions, and became confused. Now, he is constantly confused, has delusions, cannot walk without using a wheeled walker, speaks in a very soft, almost a whisper voice, and still has fatigue and all of the symptoms mentioned above. Can anyone tell me what to expect next? I'm trying to prepare myself. This is just awful. My husband and I are both 45 years old. We have 2 daughters, and up until now have been blessed with a wonderful life. We fear that this is genetic, since his grandfather died from CJD in 1983. My husbad just had blood drawn for genetic testing last week, but it takes several months for those results. I'd appreciate any input on what I can expect next, and how quickly it may go. In the meantime, I continue to pray for a miracle.
By Chris on August 20, 2014 - 7:50pm
"1 in 8,500" -- I wonder how he obtained that figure. That would be about 118 per million, which is significantly more than we are usually told. However, as everyone I talk to who has even heard of CJD tells me they know someone who died of it or they have a friend who knows someone who died of it, I suspect the total is higher than the one per million so often stated.
The CDC site now states, "rates of up to two cases per million are not unusual."
Today, I was trying to calculate how many cases there were in NC and SC. Besides the 18 surgical CJD exposures in Winston Salem, NC, in February 2014, I discovered that there were 11 more CJD exposures in Greenville, SC (August 2012). This notwithstanding, the "official statement" on the Greenville Health System blog (blog.GHS.org) in response to the exposure was, "we would expect to diagnose 1 case every other year in South Carolina." This prompted me to look up the population of South Carolina: 4.6 million. According to my math, the should expect to diagnose 4.6 cases each year, rather than one case every other year.
In the past 4 weeks since my wife died (July 16), I've read the following books about CJD: "Fatal Flaws" by Jay Ingram, "The Pathological Protein" by Philip Yam, "Deadly Feasts" by Richard Rhodes, and "Animal Pharm" by Mark Purdey -- all available at Amazon. I listed the titles in the order in which I read them, and I feel I read them in the right order ("Animal Pharm" last because it assumes a bit of knowledge already). "Fatal Flaws" was excellent and is just nine months old. Keeping a running tally while reading any of those books provokes a strong sense of higher case numbers, too.
By Mark on August 20, 2014 - 5:05pm
Jeannie, Jenny and Nora,
Thanks for your responses to my last post. I have taken a few weeks to process what my family went through during my Dad's passing and am only now coming out of the shock. During this time, I did manage to have a rather long conversation with Dr Lawrence Schonberger M.D, (Assistant Director for Public health & Chief Prion and Public Health Office at CDC here in Atlanta) regarding my concerns about a potential cluster happening in the central Virginia area. Dr. Schonbereger listened to my story about my Dad's aneurysm surgery and the evidence concerning his CJD diagnosis.
He decided that just from the preliminary information regarding my Dad's death and the three (potentially four) other cases reported in that area, in as many years, that this was not a cluster at all. I was puzzled by this immediate analysis as I have read over and over that CJD is very rare. 1 in 1 million. Dr. Schonberger assured me that this figure is really not the case. The real number is closer to 1 in 8,500. Given the size of the population in central Va, that number would seem more accurate, although I find the 1 in 8,500 number quite disturbing. Dr. Schonberger also guessed that my Dad died of classic CJD. His age was 75 which again falls in the range of those who pass from the SCJD. He said he would look into the matter further and I will again contact him to see what was found.
Dr. Schonberger also gave me another bit of information which I found disturbing regarding the prion itself. According to the research of a Dr. Stanley Pruzner, the prion changes from what is referred to as a "Alpha state" to a "Beta State" for no apparent reason. The Beta state is the deadly form, the alpha state being normal. This state change (if I understood him correctly) is an "energetic shift" that changes the shape of the prion. Once this happens in one of the prions, the "infected or changed" prion changes other normal prions through some form of resonance. Much like breaking a crystal glass with achieving the right resonance. It shatters the glass. This is way too bizarre. Far more bizarre than the notion of the change happening in some sort of viral manner.
In the final analysis, it doesn't matter to me how I lost my Dad. I simply will miss him and the void left in our lives is huge. But I am very concerned about the information or lack thereof regarding this disease. Even more so now assuming what Dr. Schonberger had shared about the actual number of cases of SCJD being closer to 1 in 8,500. It doesn't add up for me. None of it does. I believe there is far more to this story than we are being told. As time moves forward, I will spend more time trying to get to the bottom of this.
I will have to go and have myself tested to rule out Familial CJD. No one in my family is known to have had this except for my Dad, but we all know that this disease has lot's of potential for being diagnosed as something else. I believe it is far more common than is being reported for a number of reasons.
Nora, I will review the info on the link you posted. Jenny, I will fill out the questionaire this week. Jeannie, I am so sorry for your loss and the fact that you had to witness what we are all calling the monster. It is a very hard thing to wrap your head around. I will keep in touch and let you know what I can discover.
To all the rest of you dealing with this horrible circumstance, my thoughts and prayers are with you.
By Gianna on August 20, 2014 - 1:11pm
i typed below. I wanted to add the first case with the sons her first sign of CJD was her forgetting how to put the key in the door.
The second case she just had major headaches and keept forgetting simple things like her school.
If anyone you know shows signs of memory loss please get them help and try to end this sad sickness.