Case Demonstrates Disease Mismanagement
The following story is about a 62-year-old American woman from Washington state. She was diagnosed with Creutzfeldt-Jakob disease CJD in September 2012. She died on Thanksgiving day in her husband’s arms at home near Spokane. As this testimonial describes, even the most deadly form of dementia, CJD, is misunderstood and mismanaged. The highly infectious patient was never quarantined and caregivers, including family, were not warned about deadly and highly contagious prions.
As Dwight, the surviving husband, explained, “I would like this story told because I believe this is a MUCH BIGGER problem than we know. None of Anna’s doctors ever mentioned anything about the prion risks to other people.” The following commentary reflects the opinions and perspectives of Mr. Dwight Henderson as he reflects on his wife’s final months and his noble battle to stand by her side at all costs. Unfortunately, millions of others like them have been battling the mystery of dementia and prion disease in the dark. This is Dwight’s opening salvo to shed some light on the crisis for others to see.
My wife, pictured here, passed away on November 25, 2012 with prion disease, also known as Creutzfeldt-Jakob disease (CJD). It’s often referred to as the human form of “Mad Cow” disease.
In my opinion, she probably got it from eating meat products in our food supply. It’s a terrible way to die. It attacks and destroys the brain, travels down the spinal cord, attacks the nerves, and then starts shutting down the vital organs. The doctors told me that there is no treatment or cure for it.
At the end of September, Anna started having trouble walking and standing. She started getting confused and had trouble seeing. She could not hold still. While trying to sleep, she threw herself out of bed at least three times onto the floor. I moved a mattress to the living room floor so she could sleep there without hurting herself. I started dressing her and put on her makeup because she couldn’t see well enough to do it. I fed her, and had to hold her drinks because she could not hold them without spilling them on herself. I helped her walk by holding her up. At one point, I gave her piggyback rides up and down the stairs. She only weighed 98 pounds.
This went on until we went to the doctor to get her checked out. Her doctor saw her on October 12, 2012. He sent Anna to Sacred Heart Emergency to get her blood sugar and pounding heart stabilized. Anna was discharged that night and we went back home.
Anna saw her doctor again on November 2, 2012 and he couldn’t get Anna to respond to him. The doctor sent her back to Sacred Heart Emergency for more testing. The hospital checked her in for several days.
She was sleeping too much. She had nightmares and threw herself around in bed. The nurses liked her and nicknamed her “wiggle worm.” I stayed at the hospital as much as possible learning how to feed her and care for her. Anna was tested for everything imaginable. She had at least three MRIs, two CAT scans, two spinal taps and so on. She was discharged on November 8, after almost one week.
While at home on the evening of November 9, 2012, Anna became unresponsive. I washed her face with cold towels and tried to get her to wake up. After about thirty minutes, I called 911. They sent an ambulance, two fire trucks, and crew to check her out. They couldn’t get her to wake up. They sent her back to Sacred Heart Emergency. I asked the doctor there what was wrong with her. He said that she had Mad Cow disease. This was the first time I heard this possible diagnosis. I asked the doctor how she could get Mad Cow. He said, “from food.”
He admitted her into the hospital from the emergency room. I spent most of the night with her.
On November 10, 2012, a doctor walked into Anna’s room and asked me if I would talk to him in private. He told me that Anna had Mad Cow disease and there is no treatment or cure. He said that she would not make it through the holidays—it is a very nasty disease. He said it would attack her brain, travel down the spinal cord and destroy her nervous system. Then it will shut down her vital organs.
He said prepare for the worst, it will get real ugly. Make her funeral plans.
I asked how he thought that she got it. His answer was “from the food supply.”
The doctor and I signed a Physician Order for Life-Sustaining Treatment (POLST) form, for comfort measures only. They discharged Anna after a few more nights in the hospital and we moved her to a nursing home. I stayed by her side almost all of the time. I wanted to be with her as much as possible.
I would wake her, dress her, put her in her wheelchair, comb her hair, brush her teeth, and take her to the dining room for her meals. She was on a soft food diet because she couldn’t chew her food. When I put a spoonful of food in her mouth I had to tell her to swallow. Near the end, she only ate about one spoon of food each meal. She consumed few liquids. The Hospice Manual said that when people reach the end of life, they eat and drink less and sleep a lot because they are shutting down. Her first few days at the nursing home she slept a lot in her wheelchair. She began screaming out loud, thrashing about, and having seizures. I could tell that she was losing the fight more and more each day. The nurses gave her sedatives to calm her down.
On November 21, Anna had an appointment with her neurologist. While we were with him, a nurse handed him a lab report. He read it and said she tested positive and confirmed the earlier diagnosis of the other doctors. He said that she has Mad Cow and it’s from eating infected food. He explained how infected cows were slaughtered and fed back to other cows that became infected.
He said that she has about 30 days left to live. He recommends immediate hospice care.
I asked him for a copy of the lab report and we left. We went back to the nursing home. After a couple of days I, noticed that Anna was getting worse. On November 23, I asked about getting Anna discharged to home because she wanted to be at home when she passed. The young lady there in the office said “Oh, there is no way we can discharge her before next Wednesday 11/28/12 too much paper work.”
I knew this was total BS. I called Anna’s doctor. Within an hour Hospice walked in with doctors orders to have Anna discharged. The lady in the admin office had Anna’s discharge papers done in less than an hour. As soon as Anna’s hospital bed and wheelchair were delivered to my house, on November 24, an ambulance brought her home. Her condition was dire.
I told Anna that she was home. I put her puppies in her lap. Anna had a real peaceful look on her face. All the time she was in the hospital and nursing home she had a look of distress on her face. I fed her about a spoonful of baby food and some water that night. The next morning, I woke her up, just before 7 A.M. I dressed her in her favorite blouse, her favorite Pink Panther pants and shoes, sat her in her wheelchair, and combed her hair. It was now 7:20 A.M., I was ready to feed her breakfast when she took a deep breath and died in my arms.
I called the hospice nurse to come over quick. She came and checked Anna’s vitals and confirmed that she had passed. The nurse called the coroner and funeral home for me.
On December 6, at 5:50 P.M., Anna’s Neurologist called and wanted to know how Anna was doing. I told him Anna died on November 25th. He said an autopsy was not necessary in this case because of her positive tests. He said the State was tracking these conditions and may contact me later on. We talked a little more and said goodbye.
Post-Mortem Conversation With Hospital Administrator
Spokane Regional Health contacted me because I have been telling people what happened to Anna. Spokane Regional Health, who is responsible for keeping our food safe is brushing it off as no big deal, and that it never happened. They want me to shut up. Below is a conversation I had with an employee there.
On December 18, Spokane Regional Health-Dorothy Macakeran, (Epidemiologist) left a message saying she wanted to talk to me about Anna’s death. She asked me to call her back. On December 19, I called Dorothy back.
Dorothy: “Dwight, I would like to ask you some questions about Anna and how she died.”
Dwight: “That’s fine.”
Dorothy: “Do you have any idea how or where she got this disease? Did she or any of her family members have mental health problems or CJD history? Do you know anyone who has had it in the past?”
Dwight: “No. Where do you think it came from?”
Dorothy said: “Well, we are not sure. Prion disease is a mystery.”
Dwight: “Let me stop you right there. First of all, she had Mad Cow Disease, and it came from the food supply.”
Dorothy: “We don’t know that for sure, and prions can’t be pinned down.”
Dwight: “Anna had two spinal taps and tested positive both times for CJD—often called Mad Cow disease. This report is from The National Prion Disease Pathology Surveillance Center. I have the lab report right here in front of me. I also have three statements from three different doctors.”
Dorothy: “I don’t know where the doctors got that from.”
Dwight: “Dorothy, are you a doctor?”
Dwight: “Dorothy, what is your title there at work, and what is your degree?”
Dorothy: “I am a Epidemiologist, I do investigations, and I have a BS degree.”
Dwight: “Dorothy, I totally disagree with your position on Anna’s death. I accept all three doctor’s diagnoses as fact.”
Dorothy: “I don’t know how those doctors came up with that!”
Dwight: “Are you over ruling all three doctors and their diagnosis?”
Dorothy: (No answer.)
Dwight: “If I were you, I would focus your investigation on the food supply.”
Dorothy: “Where did she eat at?”
I said: “Restaurants, here in Spokane, mostly around the local area, such as the Broadway Truck Stop, Sherries, Jack In The Box. The hospital cafeteria.”
Dorothy asked: “Did Anna ever have cataract surgery with cornea donations from donors?”
Dwight: “No, she had a lens replacement from a manufacturer, not a human donor.”
Dorothy: “Did Anna ever eat animal brains?”
Dorothy: “Did Anna ever eat any wild game such as deer?”
Dwight: “No. Never.”
Dorothy: “How long has Anna lived in Spokane?”
Dwight: “Since 1975, and before that when she was a young girl. We lived for a little while in Seattle/Tacoma.”
Dorothy: “Where was she born?”
Dwight: “She was born in Austria and came to the U.S. when she was five years old.”
Dorothy: “Did she ever go out of the country?”
Dorothy: “Cook at home?”
Dwight: “Hardly ever. Awhile back it was in the news here in Washington state that there was a Mad Cow outbreak here.”
Dorothy: “It was just a minor, isolated, incident, and nothing to worry about!”
Dwight: “Dorothy, it’s easy for you to say that it was a “minor, isolated incident! I think it was a VERY SERIOUS incident! My wife lost her life, and it came from the food supply here in Spokane! How many other people have Mad Cow from the food we eat? I’m REALLY PISSED OFF that this happened to Anna. I thought our food supply was supposed to be safe!”
We bid each other farewell. During our conversation, I had this overwhelming feeling that Dorothy was trying to trip me up. It seems that she’s trying to brush it off as if it didn’t happen. Seems like a cover-up! I know I, can’t bring Anna back, but I’m concerned about the food safety and if it’s being monitored like it should. Kind of scary, wondering how many other people might be sick from Mad Cow and prions.
Post-Mortem Conversation With Washington State Department of Health
On December 22, at 11:30 A.M. (Saturday), Dr. Kathy Lofy, Medical Epidemiologist at Washington State Department of Health, called me.
Dr. Lofy: “Dwight, could I ask you some questions about Anna’s death?”
Dr. Lofy: “Going over Anna’s records here we can’t really determine which type of CJD that she had for sure.”
Dwight: “What do you mean by that?”
Dr. Lofy: “Well, there are three different types of prion disease. One type is sporadic. The second type is genetic. The third type is called variant. I believe that Anna might have died from the sporadic kind, and we do not know that much about it at the present time.”
Dwight: “How do you know Anna had that type if you don’t know that much about it?”
Dr. Lofy said: “Our tests indicate that could be the type.”
Dwight: “Then Dr., if you don’t know that much about the sporadic type. Then, that means you cannot rule that one out of the food supply either. Is that correct?”
Dr. Lofy: (No answer.)
Dr. Lofy: “With the variant type, the patient symptoms start about twelve to fourteen months before the symptoms worsen.”
Dwight: “Anna’s symptoms started about two years before. She was having trouble walking and she kept falling. She said she felt lopsided while she walked. When she went grocery shopping she would hang on to a grocery cart to help her walk.”
Dwight: “I have the lab report right here in front of me and it says she was tested positive for CJD—Mad Cow Disease. In fact, she was tested twice. Both times positive for CJD/Mad Cow Disease.”
Dr. Lofy: “Do you know Dr. Pugh, Anna’s Neurologist?”
Dr. Lofy: “I spoke to Dr. Pugh, and he said in his notes that he did tell you that Anna had Mad Cow disease and he said it did come from the food supply. After I spoke to Dr. Pugh he decided to change his statement to say it could be the sporadic type of prion.”
Dwight: “Dr. Lofy, I was there with Dr. Pugh during Anna’s appointment. While talking to Dr. Pugh, his nurse opened the door and handed him the lab report, which stated beyond a shadow of a doubt that Anna has tested positive for CJD, Mad Cow. Dr. Pugh read the lab findings to me and sat it down in his lap and said. ‘Dwight she has CJD which is the human version of Mad Cow disease.’ I asked the doctor if this could be the tip of an iceberg for the spread of this kind of disease? Dr. Pugh said, ‘yes. This comes from our food supply.” Dr. Pugh said, when an infected cow is butchered, reprocessed, and is put back into more cow feed, then this infects the cows that feed from that source. I was told by three Doctors on separate dates and times that Anna had Mad Cow disease.”
Dr. Lofy: “There are safeguards and tests in place for CJD.”
Dwight: “I need the name of the test you use. What safeguards are you talking about?”
Dr. Lofy said: “Uh, I don’t know. I don’t know exactly how to answer that.”
Dwight: “Then how do you know? How can you say that our food supply is safe? I’m not a doctor, but, if I were you, I would focus your investigation on our food supply here in Washington.”
Dwight: “Dr. Lofy, this is Saturday. Why are you calling today? Is it because the media called you?”
Dr. Lofy: “Yes, they called.”
Dwight: “Dr. I’m thinking that you people doing damage control and are trying to cover your asses and point this Mad Cow in a different direction. Dr. this is no time to worry about covering your butts. This is too serious of a matter for that. There could be a lot more people out there coming down with this disease if action isn’t taken. Back some years ago in the newspapers it was reported that a Mad Cow disease outbreak happened here in Washington. It was also reported that you, the WA. State Government was going to protect us from this disease, and that we had nothing to worry about. Is that correct?”
Dr. Lofy: “Yes, and that it did in fact happen.”
Dwight: “How do you go about keeping our food safe from Mad Cow?”
Dr. Lofy: “The cattlemen are suppose to test their cattle for BSE.”
Dwight: “How do you know for sure that they are in fact testing their cattle? Do you check them out or what?”
Dr. Lofty: “No, not that I know of.”
Dwight: “Dr. Lofy, Do you check out slaughterhouses, and meat departments in grocery stores for Mad Cow disease? And what kind of tests do you do to detect Mad Cow? If you do test, what is the name of the test?”
Dr. Lofy: “We don’t do that.”
Dwight: “Then Dr., how can you say that our food is safe and that Mad Cow does not come from the food?”
Dwight: “Doctor, I lost my wife and I know that I can’t bring her back. If I didn’t bring this up and you don’t act to stop it, and people started coming down with this disease it would be a crime.”
Dr. Lofy then went into crisis management mode and asked me some of the same questions that Dorothy from Spokane Regional Health asked. “Did Anna ever eat deer or wild game? Did she ever travel out of the country? Etc. They were desperate to find a possible prion source in Anna’s life that could take the heat off of the food supply.
Dwight: “Dr. Lofy, I know as a fact that Mad Cow disease is found in the spinal cords of animals. When the Mad Cow outbreak happened here in Washington, the order was put out to meat cutters and slaughterhouse employees, ‘Do Not Cut through the spinal cords of animals while processing meat items.’ If the animal is infected, the disease will spill into and infect the rest of the meat.
BACKGROUND: Dwight was a meat cutter for 33 years until he retired. As he said, “If the beef industry tries to baffle us with BS, it better be good, because I’ve been around the block a few times and I have worked for the U.S. Government Commissary System as a meat cutter, Yokes Foods Meat Dept., Trading Company Meat Dept., Swanson’s Meat Dept., and briefly IGA Meat Dept. There was a Mad Cow breakout here in WA. Some years back when I was working for the Commissary. At that time we were told to not cut through the spinal cord, and if we could, try to pull it out before processing. Many times parts of the spinal cord were still visible on the meat products. This was because at the slaughtering plants, when they used their saws, they often missed the mark while splitting the beef carcasses.”
Dwight: “The spinal cord of a cow runs from the neck, which is the chuck area, all the way down the center of the back bone to the upper part of the rump area just behind the top sirloin. This is about six feet long. How do you check to see if the cutters are doing this properly? Do you do this?”
Dr. Lofy: “No, we do not.”
I said: “I am worried about our food supply, aren’t you?”
Dr. Lofty: “Yes, we are worried about it too.”
Dwight: “Dr., I want to leave on good terms with you, have a good Christmas.” (The Dr. gave me her phone number and said goodbye.)
The first case of Mad Cow disease in the United States was detected in the state of Washington on Christmas Eve 2003. Allegedly, some of that animal ended up in the local food supply, which triggered lawsuits.
Meanwhile, one of Anna’s coworkers at the hospital developed CJD a few months earlier than Anna. She also died within a few months.
It also should be noted that Anna worked at the hospital for years, where she cleaned the operating room. Unfortunately, Anna and her coworker could have been exposed to prions in the hospital. Anna had the added exposure of cleaning the operating room, where infectious tissue and fluids are typically encountered. Of course, these two women could have been exposed to dozens of other sources of prion contamination. The fact that these women worked together and died within three months of each other can’t be ignored. It sure looks as though they had a common exposure.