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By Carolyn on November 25, 2014 - 8:34pm
Annalaurie, I was moved by your post and saw so many similarities in my dads presentation of this disease. He too had tingling in his arms, he talked of pressure on part of his head, he suffered the frustration of forgetting how to work the garage door opener, the tv remote, or how to feed the cat. Yet he knew there was something terribly wrong. He could discuss politics, current events, family history, but couldn't remember his morning routine.While my siblings and I frantically googled rapid loss of cognition, CJD kept coming up. I read the symptoms and felt reassured. No, he's not hallucinating, no insomnia, in fact he was sleeping more than usual, no he doesn't have tremors. His gait was ok. It never occurred to me that he didn't have those symptoms YET. We too searched for answers. I remember telling the doctors we could handled the truth. We just needed to know what the truth was. We shared your experience of interacting with him til the end. He too could only move one arm. The glances and touches we shared are a gift I will forever treasure. He loved us so, and let us know it. We lived surrounded by grace. Thanksgiving Day will mark the 3 month mark of his passing, and we are so thankful for him!
my advice to those going through it right now: live in the moment, journal conversations and events, research the disease and have flexible plans in place to deal with each symptom as it presents, share feelings and tears, share regrets and gratitude, take pictures and videos, laugh, look for those moments infused with meaning and holiness. Accept offers of help with tasks such as meals, shopping and lawn care. Pray together. Establish structures and consistency in the day as much as possible for as long as possible. Structure was comforting to my Dad when he lost the ability to recognize patterns or even time. One particularly rough morning he asked my mom if it would get dark again that night. Keep the household picked up and organized. He would wander around the house picking up objects and moving them as he couldn't figure out what they were for. Order became important. When he was bored, restless and agitated, music seemed to help. Watch for signs of agitation with visitors and limit visitors and visit duration as appropriate. Keep conversations simple. Multiple people talking at once was very confusing to him. Be careful with jokes as your loved one may no longer understand "kidding.".
We did not receive a miracle of a cure, but we received the miracle of finding strength, gratitude and absolute love in the process of going through it. And the reward of knowing how very pleased and proud he is that we came together to care for him. So blessed.
By Arturo on November 19, 2014 - 1:14pm
I'm sorry to read of your dad's passing This disease is cruel and is completely surreal. When I read of your dad's age I was shocked. The cases of vCJD I have read about have had taken our loved ones below the age of forty. My dad passed 12 years ago after a 4.5 month battle with sCJD. Passing one month after his 48th birthday. They say every case of CJD is different, but the symptoms you described that had afflicted your dad were pretty much the same symptoms that my dad had.Thank you for sharing your story with us. Take care, God bless...
By Annilaurie on November 18, 2014 - 11:50pm
April 2013 I lost my father to vCJD. Dad died a few days before he would have been 67.
In November 2012 Dad and I were dancing at my wedding, in March Dad started seeking medical attention to try and figure out why he wasn't feeling well, in April he died.
Symptons: I remember Dad telling me he was having trouble sleeping. He said he was having hot spots in his head, but no fever.
The hot spots continued..Dad went to several Doctors and none could find anything wrong. Dad knew something was wrong, test after test showed nothing.
One day I was on the phone with my father and he locked himself out of the house, he completely freaked out and then his voice started slurring, I though he was having a stroke.
Dad went to the hospital, they told him he had a stroke and sent him home. A week later my sister and I went to visit, Dad was behaving normally except his voice was slurred.
Dad complained that evening about having tingling in his hands. The next morning Dad got us up and said he was going to the hospital. He didn't feel good, he was scared.
The hospital ran more test.... Still nothing. Dad insisted on staying in the hospital, he wasn't leaving until they found what was wrong. He knew he was very sick. One week later in the hospital, they still found nothing. Dad was moved to another hospital and entered into Rehab to recover from his stroke. Rehab was going well for 4-5 days... Dad was soon unable to talk, he emailed on his iPad, then within days he couldn't us his iPad. He went from recovering from a stroke to "come now your father is fading fast".
Easter Sunday we got the call to come, now, to the hospital. Disbelief and panic set in. 5 days later CJD was confirmed. Less than a week later Dad was gone.
Words can not describe the pain this disease brought to my family. It was as if a demon entered my fathers body. His eyes told you he knew what was happened, but he did not have control over his body. He could not speak, eat, walk, or control the body twitches. I still believe I am numb from the overwhelming pain of watching my father suffer without being able to help, there is absolutely nothing anyone can do to stop this horrible disease. You can only try to control the symptoms.
We prayed for healing that did not come. The family gathered and everyone was able to see Dad before he lost all senses.
Many tears were shed, Dad could not speak but his eyes spoke for him. My sister and my father did not have the best relationship, Dad could only move one arm, he held my sister and cried with her. It was as if he knew exactly what she needed, the love of her father. There were no unsaid words, love was shared by all, there was beauty in having closure.
My sister and I used the internet to play music from our church. We sang to Dad and prayed for Dad to be at peace. Dad was not scared, he was sad.
I don't know why this horrible disease was stricken on my Father. I only know God has a plan and it is only for good.
This is a horrible, unspoken disease, I believe there are more than 1 in a million that died from CJD. This disease is misdiagnosed.... Autopsies are needed to determine the confirmation of CJD. Once we knew Dad had CJD and would die we asked if we could donate his body for research. We were told no, because of his diagnosis they would not take his body. I was sickened... If we could not donate his body...how can we learn more about this horrible disease? We did research online and found Case Western, we called and made arrangements for Dads brain to be sent for research. VCJD was confirmed by the autopsy. Our prayer is that Dads brain will provide some clue to help stop this disease.
I few very unique things about my Dad:
Dad did not take meds unless prescribed by the doctor. Antibiotics
He would not even take Advil or Tylenol for a headache
Dad traveled the world
Looking back......some early signs were
Hot spots in his head that did not cause a fever.
Tingling in his arms and hands
Thank you for letting me share. I miss my Dad so much! I hope this post helps someone out there, I know it has helped me to be able to share.
By Arturo on November 16, 2014 - 6:10pm
I am sorry to read of your dad's diagnosis. Dealing with CJD alone is daunting enough, but this coupled with Muscular Dystrophy must be tougher. We are all here for you, as we al have walked (or walking) down this road. My dad passed twelve years ago, after a 4.5 month battle with sCJD. Passing one month after his 48 birthday. My dad was also a VA vet. From what I remember, they kept my dad on a isolated private room, until they reached the diagnosis and said we can take him home. He chose to spend the remainder of his days at home rather than hospice. When it came to the point where we were no longer able to care for him at home, my mom took him back to the VA and had a shared room this time. While in the hospital, they looked for convulsant placement. Many convulsant facilities denied him (because of their unfamiliarity of the disease) . That tuesday he was transferred to a convalescent hospital and passed that Friday evening.
If you would like to talk to a family on a one-to-one basis, feel free to email Lori (at the email address above this page). Take care, God bless...
By William Voyles on November 15, 2014 - 9:08pm
My name is William, my father was diagnosed with probable CJD a little over 3 months ago.He is progressing into rapid mental deterioration. When we got the diagnosis my father decided too sign a DNR, he has suffered from Muscular Dystrophy his whole life and a host of other problems. I have cared for him for 2 years full time now but his current mental state is quickly reaching beyond my ability. Hospice has been involved for a two months now and they are great. They are working with the VA to help me get my father place somewhere he will be safe but there seems to be a stigma with CJD and placement is hard. Has anyone else run into this issue?
By Chris on November 15, 2014 - 7:34pm
Lynn, I’m sorry about your mom.
Will she feel pain? The doctors and neurologists told us that Laura (my wife) would not feel pain. I do believe that she felt some mental anguish occasionally during the final week,or, for all I know, that might have been constant; but there was no indication of physical pain. Additionally, the doctors stated that her sense of hearing would remain until the end, and I observed that to be accurate.
Jenny: I wish someone had told me about that “Final Gifts” book before Laura died. Speaking about books and mourning, I’m just about to finish one that has been very helpful: “The Grief Recovery Handbook” by John James and Russell Friedman. I also appreciated “Reflections of a Grieving Spouse” by H. Norman Wright, although this latter tittle seems like it might be more appropriate for husbands simply because it is in the husband’s voice.
Patrice: Your post moved me very much, because Laura used to rest her head on my shoulder for comfort until she could no longer do so.
Jean: Today (11/15) it will have been 4 months since Laura succumbed to CJD. Like your husband, she was in 3 facilities, first we spent all day in an emergency room of one hospital. Then 20 days in the main hospital here in Asheville. We too, received the bad news on the 20th day, and the next day we moved to the hospice where Laura spent her final 6 days (she died on July 16).
(Lori has my email)
By Michael , St. Louis on November 13, 2014 - 2:33pm
Today (11/13)is 25 year anniversary of my mother's passing from GCJD at the age of 59.My brother passed away from GCJD 17 years later at the age of 56 on 11/17. God bless them both.
I must add that 25 years ago, nobody knew anything about CJD. The only information I had access to were 2 medical journal articles that the Neurologist copied for me.By today's standard, much of the information is now outdated and inaccurate. Believe me, progress is being made.
By Arturo on November 11, 2014 - 2:46pm
I am sorry to read of brother's diagnosis. My dad passed from sCJD 12 years ago. He courageously battled this disease for 4.5 months, passing one month after his 48th birthday. It is hard for your child to grasp the reality of this disease, a sentiment your brother's children maybe feeling. I was only 12 when my dad was sick. I couldn't deal with it, but at the same time I knew I had to be their for my mom, so I convinced that my dad was acting. Once my dad passed, reality quickly caught up with me and made me realize that he wasn't acting. He was actually sick. If you or anyone in your family would like to stay on one-to-one contact, please feel free to email Lori (at the email address abve this page). She will be more than willing to relinquish my contact information. Take care, God bless...
By Carol Benoche on November 10, 2014 - 11:07pm
My brother, and only sibling, has developed CJD about 4 months ago. He is 5 and 1/2 years younger than I, him being 71 and me 76, I always thought I'd be the first to go. He and I have always been close, especially
as children, when we were in a terrible accident,loosing our Father and almost lost our Mother.
I live in VA. and he lives in CA., so I feel guilty that I can't be there for him or my sister-in-law.
I flew out to see them 2 months ago and was so glad I did, as my brother was still communicating some and knew who I was then. Now I'm told he isn't able to walk, his talking is minimal he had tremors, and doesn't seem to recognize his wife. It was difficult to leave after a week, and needless to say it was probably the last time I'll ever see him alive.-- Difficult wasn't the word for it.. His 3 children have disassociated themselves from their father and step-mother, which is another heartbreaking situation.. I can't find it in my heart to communicate with them, for their mistreatment of their father. I feel I don't know them anymore, or perhaps I never really knew them.
My sister in law and I communicate, and she seems to be holding up better than I am at times, although she's told me how lonesome and alone she's feeling, with the burden of everything on her back. I love her and wish there was something more I could do to encourage her. I do correspond through e-mails and cards, but find it rather hard to talk over the phone. Guess that's why I'm pouring my heart out here. So thank you for listening.
By Jean T Greathouse on November 10, 2014 - 12:24pm
Patrice, like you, I was in mourning before my beloved passed. From the third day he was in the first of three hospitals, I knew our outcome was not going to be good. Then on the 20th day in our third hospital, when we were told he was dying, I went into full denial and began to distance myself from what was happening. Wednesday will be. Four months since he physically left us, but was gone prior to that. My thoughts and prayers to out to you. Please contact me if you'do like to talk.
By Jenny on November 6, 2014 - 10:45am
Darek~ Usually a CJD diagnosis is only made (or even suggested) after all other possibilities have been ruled out. It can mimic many other illnesses (many treatable), so those should be ruled out first.
Olivia~ I'm sorry to hear about your mom (and your grandfather). Some doctors believe that sometimes a traumatic event (big surgery, death in the family, divorce, etc.) can trigger CJD. Like Arturo said, all of us here can empathize with your situation. It's a tough road, one I wouldn't wish on anybody.
By Arturo de la Cerda on November 5, 2014 - 7:11pm
I'm sorry to read of your mom's diagnosis. The rapidity of this disease is unfathamable unless you have the misfortune to experience it. We all empathize with your situation. We've all walked (or walking) down the road you are on. My dad passed 12 years ago after a 4.5 month battle with this monster, passing one month after his 48th birthday. If you would like to stay in contact on a one-to-one feel free to email Lori (at the the address above this page). She will be more than willing to relinquish my contact information. Take care, God bless...
By Michael, St. Louis on November 5, 2014 - 12:28pm
Over the past 20 years, I have lost my mother, brother and a cousin that I grew up with. I have also researched my family by reaching and tracking down relatives I never met. I have concluded that in 3 generations, my family has lost up to 8 family members to GCJD. I am still researching.
My family came from CZECH 3 generations ago which has a high volume of GCJD.
Prayers are with you
By Olivia on November 4, 2014 - 3:09pm
My mom's doctors are all concluding that she has CJD. She started with some memory loss and confusion 6 weeks ago, but her dad just passed in Aug. She quickly declined to mass confusion and not being able to care for herself, within a couple weeks she went from watching my 16 mo old, changing diapers to wearing them herself. She has been in the hospital for 3 weeks now and has been through a battery of tests. They have pretty much ruled out all other options. She was such an active, vibrant healthy woman just a few short weeks ago. At this time she is on a feeding tube, rarely opens her eyes (when she does there is no recognition) and doesnt move except for the jerking, which has been minimized with anti-seizure meds. My step-dad's heart is breaking and we are both currently in a state of shock at the whole situation. We keep praying that they find something else, something treatable but daily I feel my hope diminishing and the reality of this CJD diagnosis setting in.
By Arturo on November 4, 2014 - 1:23pm
I'm sorry to read of your aunt's passing. This disease is cruel and unfair, no matter what variant it is. My dad passed away from sCJD 12 years ago. He courageously fought this monstrous for 4.5 months, passing one month after his 48th birthday. You and your family ar´in my thoughts and prayers. Take care, God bless...
By Lee busch on November 3, 2014 - 5:28pm
I just lost one of my aunts to this illness today, my grandfather I never met because of it. And in a few months I will lose another aunt to it.
By Darek on November 3, 2014 - 2:12am
Any body here hada CJD diagnosis but it turned out to be some-thing else?
By Jenny on October 30, 2014 - 8:18pm
Oh, Patrice. I'm so sorry about your husband's diagnosis of CJD. Your story reminded me quite a bit of my dad's illness. It's so hard to see someone so strong, smart and articulate deteriorate before your eyes. All of us on this board have experienced our own CJD illness and loss, so we understand what you're dealing with. Peace to you.
By Patrice on October 28, 2014 - 11:24pm
My husband was officially diagnosed with CJD in July 2014. Initially his diagnosis was vascular dementia, But, the rapid decline of his cognitive skills and further testing (spinal tap) confirmed the CJD. In the last few months his memory is gone and he talks mostly nonsense. There is no communication and no conversation because he cannot focus or follow the flow of words. In many ways he is like a 4-5 year old with his verbal skills and expressions. He has lost mobility and is confined to a wheelchair and has lost all control of his bowels. Test results returned show that except for his flaming brain he is in good physical health and strong as an ox. He is not wasting away and has a healthy appetite, He was placed in a nursing facility two months ago. He was able at that time to walk into the facility and was wearing his own underwear (not diapers) and was able to make some decisions on his care. I wait for the next signs of decline wondering what it will be and how it will affect his life. The man I loved and married is gone. There is this childlike creature now. I have already begun the mourning process as I have had to let my dreams of our future together go. I met him when I was a 13 year old girl and he was 15 years old. That was 1959 and we have seen 55 years of changes together. By far, this challenge in our lives is the hardest and cruelest. I sit by his wheelchair and rest my head on his shoulder and feel some comfort. Just yesterday he actually reached up and patted my head. It was very moving. Am I prepared for the next phase? I am not!
By Jenny on October 25, 2014 - 6:33pm
Lynn~ I'm sorry to hear of your mom's diagnosis. As all of us on this board know, it's no easy task having CJD be part of your family. As Arturo said, every case is different. My dad's illness was quite long (both a blessing and a curse) for CJD. We moved him into a nursing facility for his last 2 months, so my sister and I could see him and my mom would have our help and support. He gradually declined during that time, sometimes more rapidly and sometimes more slowly. He eventually lost the ability to talk and eat. He was basically in a coma for his last 2 days.
A cousin of mine recommended a book called Final Gifts (by Maggie Callanan and Patricia Kelley) when my dad was ill. I am so glad I read it. Certainly not an upper of a book, but I found some solace and understanding in it. The subtitle is: Understanding the Special Awareness, Needs and Communication of the Dying. My mom and sister read it, too, and we all feel like we would've missed out on some things my dad was trying to communicate had we not had the knowledge we learned from the book. I've recommended it several friends whose parents are ill, too (not CJD).
By Arturo de la Cerda (Oxnard, CA) on October 25, 2014 - 2:28pm
I am sorry to read of your mom's diagnosis. This disease comes out of nowhere unexpectedly.My dad passed 12 years ago (this past 18th) He courageously fought sCJD for 4.5 months. Passing one month after his 48th birthday. To answer your questions, every case of CJD is different the symptoms exhibited. In my dad's case, he had hallucinations, progressive dementia, and balance issues. My mom told me yesterday the had constant margin headaches. He wanted spent the majority of the duration of the illness with us at home, until my mom were unable to take care of him. My mom had to readmit him to the hospital a month prior to his passing. The Wednesday prior to his passing he was transferred to a nursing home and passed that Friday evening.
If you would like to keep in touch on a one-to-one basis, please feel free to email her. She will be more than willing to relinquish my contact information. Take care, God bless...
By Lynn on October 25, 2014 - 1:34pm
I am looking for some information on what to expect during my mother's dying days. She was diagnosed in August and now has hallucinations, loss of movement on one side, vision issues, incontinence, and the disease is progressing quite rapidly. I just don't know what to expect as the end gets nearer. Will she be in pain? There is such a lack of information out there for families, that any info will help.
Please contact Lori for my email address.
By T.B. on October 23, 2014 - 12:42pm
My dad was a vivacious, funny, full of life kind of man and loved everyone. In September of 2013, he began to display signs of confusion. He went around the house unplugging things. Oh, I should mention, he was in the electronics and scrap metal business for a long time. He forgot where his keys were although they were in his pocket. He put the house key in the ignition of the car. He forgot how to use a cell phone and unlock the front door. It goes on. After a month of these changes, we decided to have him checked out. The neurologist's suspicion was CJD. After a battery of tests (including a lumbar puncture) and a week in the hospital, the neuro said the results were not indicative of CJD.
My dad's condition worsened. Bowel and bladder functions ceased, his mobility became less, his cognitive functions decreased, he had a series of seizures and was hospitalized several times. We took him to see another neurologist, a hematologist, cardiologist and primary care giver (more exams). All reports pointed to dementia or Alzheimer's (Alzheimer's does not progress rapidly like this). He took a fall at home and was hospitalized one more time. From here, we had no choice but to put him in a nursing facility. This all happened so rapidly. A nursing home was the LAST place I expected to EVER put my father!
Once in the nursing home, he declined further. His body became contracted, although he still had strength in his hands, he could squeeze like the best of them! But he could no longer walk. By the end of May 2014, he was no longer speaking. Oh how I wished I could hear him call me his "little girl" one more time. He was alert, but not verbal or mobile. He eventually stopped opening his mouth to eat, a feeding tube was placed as Mom was just not ready to let him go. In September 2014, dad developed pneumonia along with several wounds and infections. He was hospitalized once more. The attending MD told us, in a very caring manner, but factually, that the end was near and she felt his condition was caused by Vascular Dementia...also a rapid progression type. We put hospice in place. Dad was stable enough to return to the nursing home. Sadly, he died 2 days later.
It has been a whirlwind to say the least. Because it happened so fast, and the attending MD at the hospital thought it was a form of dementia not CJD, we never even thought about an autopsy to determine the actual cause. Now I wish we had.
To anyone who's loved one is declining rapidly with all symptoms pointing to any form of CJD, I say put in place an autopsy. It will give you some peace of mind.
God Bless all of you who are going through this.
By Arturo on October 23, 2014 - 12:40pm
your comment did not sound crazy. I, along with many other families, believe there could be an environmental factor (whether it be exposure to BSE or otherwise) in the high percentages of Sporadic CJD cases. BSE and nvCJD (along with Feline Spongiform Encephalopathy) has shown us that the Prions can cross the species barrier. But there's still is so much unknown about Prion disease and CJD. Take care, God bless...
By Michelle in Philadelphia on October 23, 2014 - 9:59am
A few years ago, the CDC investigated whether there was a link between some people with CJD and working and/or eating at the Garden State Race Track in Cherry Hill, NJ. (It was a large track where you could gamble on horse races.) The CDC determined that there was no link. I hope what I'm about to say doesn't sound crazy, but I want to put it out there just in case any researchers are still considering this link. My uncle, who died from CJD in July 2013, lived one town away from the racetrack. He never worked there, and I don't know if he ever ate there, but he did go there each year to get horse manure, which he used to fertilize his large vegetable garden. (I did request that this information be added to his patient registry information.) So knowing that there already has been a suspicion of a link between CJD and this racetrack, I can't help but wonder if there could have been anything in the horses' diet containing prions, which got onto the vegetables that my uncle ate.
By nora on October 22, 2014 - 10:19am
message for jasmine, please could you contact me via Lori she should be able to give you my e-mail address I have some very helpful information for you, it contains contact details and advice which I am unable to post on the guestbook unfortunately.
By Jenny on October 22, 2014 - 9:54am
Chris~ It is my understanding (and I'm not a doctor, nor do I have any medical training whatsoever; but I have read a bunch for a "layperson" on CJD) that the subtype designation on the autopsy report is based solely on the pathology findings. And I experienced the same thing you did regarding the subtypes: I was surprised I didn't come across information on them earlier in my "research."
Lorraine~ You have some very good points and tips. Sorry for your loss.
By lorraine collins on October 21, 2014 - 10:54pm
It is four years ago since my husband died of CJD at 66, diagnosed 6 months earlier seemingly
very healthy. I encourage, like most people on these pages to seek out others who have gone
through this experience as caregivers and how this disease progresses. Create a support group
of friends and family to share in supporting you and your loved one. Just hug your loved one
and accept help from friends and family and understand the fast progression of the disease.
We received medical support from UCSF San Francisco and our local Hospice. My love and support
go out to all CJD families
L. Collins/Santa Rosa CA
By Chris on October 21, 2014 - 4:38pm
Finally received the results from Laura's brain autopsy from the NPDPSC. I was emailed a scan of the letter on October 17, which was day 92 from when they received her brain, and also Laura's and my wedding anniversary. The first paragraph confirmed sporadic Creutzfeldt-Jakob disease (sCJD)MM1, with the final sentence affirming that Laura's case is not familial, according to the current criteria for familial prion diseases. That last bit of information is of great comfort to the surviving sisters, nieces, and nephew who witnessed the death of Laura's younger sister just 2 years earlier from an "undetermined" disease, and their father the year before that, from Alzheimer's.
They had originally said the results would be ready within "90 days," and so I waited 90 days, and then I phoned on the next day (October 16), only to discover that the autopsy report had been mailed out ten days earlier (October 6) to the four doctors I had named on the submission form and also to the NC DOH. None of those doctors notified me, nor did the NPDPSC inform me of the mailing as they had promised they would. If I hadn't called for a status update on day 91, we might still be waiting for the results.
The "MM1" subtype designation puzzled me, because I hadn't encountered that in any of my voluminous reading about CJD. Subsequent research revealed that there are 6 subtypes, and MM1 is the most common. According to “Advances in Prion Disease Surveillance," the MM1 subtype is characterized by “Rapid progression (<4 months), PSWCs on EEG, prominent and early myoclonus, and synaptic patterns of immunostaining.” Those features describe Laura’s case perfectly. Moreover, the average onset age for MM1 is 63.2 (Laura was 63.7), and the average duration is 3.9 months (Laura's serious symptoms lasted only 26 days, but now, in hindsight, some minor events that we took to be innocuous “senior moments” may very well have been earlier symptoms of CJD).
According to what I’ve been able to learn concerning the various subtypes, Laura was a classic example of “MM1” in every way. However, I wonder if the pathologists made that determination based purely upon the autopsy, or did they also consult Laura’s medical records, which I had sent to the UCSF Memory and Aging Center, and/or my timeline of suspected symptoms that I had sent to both the USCF center and the NPDPSC.
(Lori has my email address)
By Arturo on October 21, 2014 - 11:54am
I am sorry to read about your cousin's fight with this monstrous disease. This is truly heartbreaking to say the least. My dad passed 12 years ago, but it still feels like yesterday. He fought courageously for 4.5 months, passing one month after his 48 birthday. If you would like to stay in one-to-one contact with me, feel free to email Lori (at the email address above this page). Take care, God bless...