Series: What's Under the Dementia Umbrella? (Interview)
Wernicke-Korsakoff syndrome (WKS) is a little known and misunderstood diagnosis. In our last newsletter article, we covered an overview of the syndrome, including the prognosis and treatment options. I have the unique chance of knowing a gentleman, Doug Hall, whose wife is living with WKS. He was kind enough to respond to the following questions to provide us with more insight on the syndrome.
Kristina (K): "How old was your wife when you first noticed symptoms of WKS?"
Doug (D): "Laura is now 58, almost 59 years old and I recall observing increasing forgetfulness starting at about age 52 or 53."
K: "What were the signs/symptoms and associated causes?"
D: "The signs to the family were the increasing level of forgetfulness and increasing instances of loss of balance. She would stand up from a chair or get out of her car seat and lose her balance, sometimes landing in a way that injured her. We pursued medical diagnoses of low blood pressure and other causes of dizziness, but ultimately understood that the loss of balancing capability was a sign of WKS
K: "...and the associated cause?"
D: "My understanding is the onset of WKS is due to specific brain damage from Vitamin B deficiency resulting from malnutrition driven by negative eating behaviors arising from alcoholism."
K: "What was for process to ultimately coming up with the diagnosis of WKS? Did she have any incorrect diagnosis before the doctors decided it was WKS?"
D: "For a couple of years, she experienced increasing incidents of loss of balance and falls with minor injuries. These incidents resulted in a couple brief hospitalizations, mostly for observation of head trauma. These were never too serious, nor did any good diagnosis of WKS emerge from any of the medical care incidents. Finally, during one occurrence in 2012 I went to the hospital staff and reported that she was a regular, heavy drinker and that I wanted that in the medical record. This acted like a key to unlock the door to the WKS diagnosis. The nursing staff told me that she smelled of alcohol upon admission, but that Laura dismissed it. She appeared to have never accurately disclosed the extent of her drinking and never declared that she was an alcoholic or a problem drinker. Once the hospital internist saw the updated notes, he reassessed her and developed the diagnosis of WKS."
K: "Was she open to treatment right away?"
D: "She was not at all open to treatment and carried on with her drinking and malnutrition behavior, which continued through 2013 into early 2014."
K: "What was the process for getting her sober and introducing diet and supplement changes?"
D: "In 2012 we separated and I moved to Seattle while she remained in Orlando Florida. She lived with a “drinking buddy” friend Jim, and I supported them long-distance. In April 2014 I had a strange phone conversation with her friend in which I learned Laura had been on the sofa for a couple days and was not eating nor caring for bodily functions. Her friend was concerned and I told him to monitor her for 2 more hours and if she did not rouse and eat something then he should call 911 and get her some medical care. He did that and Laura was admitted to a hospital and remained there until moving to a skilled nursing facility in May 2014. During the hospital and SNF stays she was detoxed and her nutrition was normalized. I went to Florida in June 2014 and visited Laura as well as emptied her house. On July 1 I flew her to Seattle and checked her into a Rosewood Courte Memory Care Facility the next day, and she is now a resident at Heritage Court Memory Care in Everett."
K: "Did you see an improvement after treatment and how long did it take?"
D: "During my time in Florida, and then at Rosewood Courte, she exhibited Korsakoff symptoms of confabulation and hallucinations. These symptoms persisted for about 4 or 5 months, then subsided. After six months of nutrition and supplements she leveled off at short term memory loss, about 9 years of medium term memory loss, severe loss of balance and peripheral neuropathy."
K: "Did you seek any support for yourself during this difficult time? If so, did you find it difficult to find resources?"
D: "I did not seek any support other than the services of an elder care attorney. We had filed for divorce in Florida in April 2013, so our emotional relationship was strained. The 9 years memory loss period caused her to forget that we were divorcing. I suspended the divorce proceedings to take charge of Laura’s care."
K: "What kind of support does she now require?"
D: "Laura is fully disabled and her level of care requires full assisted living. She is qualified and receiving DSHS Medicaid coverage for residence and care at Heritage Court."
K: "Anything else you would like to share or advice you may have for others who may be in your situation?"
D: "We never hear about WKS, so raising awareness of this syndrome, related to alcoholism, is important. Most people seem know about the liver problems from heavy drinking, but the malnutrition and related WKS appear to remain almost unknown."