Recent events have caused me to believe some medications are creating more harm than benefit for Victoria. The issue is identifying what may be Alzheimer’s medication problems, or the effects of the disease itself. After missing a couple daily medications, and using a prescribed sleep aid, I have observed a woman who has become less respondent, less able to communicate, and deeply withdrawn.
Frontotemporal Lobe Dementia
Call it Frontotemporal Lobe Dementia, simply Frontotemporal Dementia, FTD, or Pick’s disease, the long term effects caused by the diminishing frontal lobe of the brain are often subtle. In fact it took about ten years for us to get a proper diagnosis for Victoria.
I’ve watched Victoria go from a very strong, compassionate, and competent woman who balanced a nursing career, motherhood, marriage, friendship, and faith to her current totally dependent shell of who she had been. Tear. One of the early symptoms attributed to FTD is the inability to hold a job and in the later part of the nineteen nineties Victoria started moving job to job. Where upon Victoria had never had problems in the past, she was now experiencing workplace conflicts. Then, one day without any signs of distress Victoria collapsed on the floor crying non-stop. A trip to the hospital and Victoria was put on Paxil for depression.
Depression was, I now believe, the first misdiagnosis. I believe the effects from the diminishing frontal lobe caused the frequent pattern of job changes and a misdiagnosis of depression instead of Pick’s disease. This was approximately 1999; and we didn’t get a definitive diagnosis of FTD until 2009.
Hidden Symptoms
The prescription Paxil seemed to control Victoria’s “depression.” When crying symptoms increased, doctors doubled the Paxil. Note that there were never any Radiology or Laboratory testings given to find other causes of Victoria’s condition. Not one primary care physician sought to look for other causes until Victoria’s compulsive behaviors, traffic accidents, continued job problems, and obvious memory issues were so acute we desperately sought help. Granted, my honey is very intelligent and provided appropriate responses to orientation questions. Still, it’s as if hidden symptoms prevented doctors from thinking, from exploring real underlying factors.
Brain Routes
With the diminishing frontal lobe we have experienced changes of behavior, compulsiveness, memory loss or inaccessibility, incontinence, and more. Obviously the brain routes have been effected. What is amazing is there are times when Victoria can communicate, find words, coherently compile complex sentences, and otherwise appear normal. This occurs when Victoria is nearly asleep; when brain routes involving the subconscious are active and can tap areas of the brain the frontal lobe cannot. When treating Victoria with a sleep aid, it appeared there were a few occasions when she again clearly articulated her needs. I’m suspecting the sleep aid brought Victoria into a twilight type sleep and before she actually did sleep, talked.
Medication Change
Unfortunately, the sleep aid was too much most of the time; leaving Victoria like a vegetable. So I wondered, since information is still in the brain, wouldn’t it be nice if we could reroute the brain paths much like siezure patients relearn after having their brain spheres split? I mused about this with my personal physician and after brainstorming I began to suspect that both the Paxil and the sleep aid may be impeding what remains of Victoria’s reasoning and communications. Is it time for a medication change. Like I mentioned earlier, after forgetting medications on a couple days I saw a more communicative Victoria. Yesterday I discussed this with Victoria’s doctor. She found merit in my observations and agreed to reduce and eliminate the Paxil on the premise that it may be the wrong drug for an initially errant diagnosis. Further, my naturopathic physician had read about the sleep aid Ambien having positive results for Alzheimer’s patients. Discussing this with Victoria’s physician we decided it was worth a try.
The experiment has begun. I started Victoria’s first dose of a smaller dose of Paxil. Nothing is one hundred percent, but I’m sure there have been Alzheimer’s medication problems with Victoria’s care. With the differences of Frontotemporal Lobe Dementia we are proactively attempted to improve Victoria’s lot with medication changes; Ambien hoping to capitalize on Alzheimer’s benefits, and a Paxil reduction believing this drug my be causing more problems than allegedly fixing depression. And before anyone gets anxious of our plan, I will watch to make sure Victoria doesn’t show symptoms of depression, or react to the Ambien by wandering, cooking, etc. I know the trouble things to watch. I am hopeful Victoria will benefit from this and have a better quality of life.
