LBD is a distinct, common form of dementia affecting 1.3 million Americans and is highly under-diagnosed. LBD has overlapping symptoms with both Alzheimer's and Parkinson's disease, making diagnosis a challenge. Early and accurate diagnosis is essential because LBD patients may react to certain medications differently than Alz. or Park. patients.
Diagnostic Criteria for LBD:
* Deficits in attention, executive dysfunction, and visuospatial ability (Dad has a hard time focusing on something or learning new things; he used to thrive on change, now change confuses him and makes him feel stressed out.)
* Parkinsonism (Dad has occasional tremors, almost constant rigid/shuffling gait, impaired balance, writing changes--even worse than his usual "Pharmacist handwriting!", and speech changes. Dad went through a period for several months where his voice was weak, almost whisper-like. He also had slurred speech for a while. These are not as evident at this time, but they come and go)
* Fluctuating cognition, attention, and alertness (LBD can vary week to week, day to day, hour to hour. Some days Dad seems perfectly normal other than his parkinsons symptoms. On those days I ask with great hope, "Are you sure you have dementia?" He answers yes. I ask mom and she answers yes. I asked his family doctor, and he answered yes. I guess I just hold out hope on the good days that maybe he was just having a bad few days and it isn't really LBD. But, then LBD rears its ugly head again and I am back to reality.)
* Visual Hallucinations, delusions, apathy
(Dad has had apathy for over a year. This was one of the first symptoms. I tell everyone it looked like MAJOR depression, except that he wasn't sad and he was taking antidepressants and seeing a counselor and it still wasn't helping. One day the psychiatrist added a second antidepressant still thinking it was depression. Kim called me from his work and told me to follow him to the doctor...he was on his way there and was acting very strange. I burst into the doctor's office in tears. I said, "My dad is dying before my eyes. I think he has Alzheimer's." This was 6-8 months before his diagnosis. In fact, I had been asking dad for a year or so if HE thought he had early alzheimers and he always said no. His memory wasn't too bad, but he wasn't "my dad." I felt like the twinkle was gone from his eyes and something wasn't right. Dad has very little interest in anything anymore. He mainly sleeps (sometimes as much as 16-18 hours per day) and watches tv. Other than that, he doesn't have the energy or desire for doing much else. His affect is very flat, with little facial expression oftentimes. This is a parkinsons symptom.
I thought Dad didn't have hallucinations, but they have appeared since his diagnosis. One night he thought his legs were gold and spotted. Mom assured him that they weren't and he was ok with that. Then, this very morning, he pushed a bell he has for Mom to know when he needs something. When she went to check on him he told her there was a baby under his covers and he was scared it would suffocate. Mom assured him there wasn't a baby there. He quickly snaps back to reality and can even laugh about the hallucination later. I know there will come a time when these hallucinations will be hard for him to realize, and he will probably think they ARE real.)
*REM sleep behavior disorder
Dad has not had a REM sleep study, so I don't have much information on this. I know LBD often act out their dreams violently. Dad's dreams have been more vivid lately. One night he fell out of bed during his sleep and had to get 6 stitches above his eye, a laceration on his cheek glued together, and broke his nose. His doctor at Emory suspects this was due to violent acting out of dreams.
*Severe Sensitivity to Antipsychotic drugs
Thankfully, he has not had to take any of these. However, there is a possibility that the antidepressant combination he was on triggered one of these catatonic-like states. He improved once he came off the extra med.
*Autonomic Dysfunction
This is by far Dad's most debilitating symptom at this time. This is what first sent him to the doctor a year or more ago when the counselor he was seeing for "depression" realized he wasn't dealing with depression but something medical instead. He has Orthostatic Hypotension. This means that his blood pressure bottoms out when he stands, and it often takes several minutes to happen so he can be walking along and pass out with little warning. It can also cause his supine (lying down) blood pressure to be extremely high. We have raised the head of his bead, and he wears waist-high support hose daily to help with blood pressure problems. Drinking lots of water helps, too. The hose have been the best remedy, and he has the best sense of humor about them. He jokes about wearing his "panty hose" when we go out to dinner. They give him a nice tan. They are tight and very difficult to get on. Neither he nor Mom has the strength to put them on him, so his faithful friend Phil Lawson comes down every morning and puts them on him. What dear, precious friends we are blessed with! Autonomic dysfunction can also affect other areas of the "automatic" nervous system including heart rate, breathing, and sweating. We pray we don't experience those problems.
The scariest symptom is the falling. There is little warning when it happens, and even if you are nearby you simply can't catch 210 pounds of dead weight as it drops beside you. I try to remind Dad to sit down in the floor if he gets dizzy, but he can't process that at the time it happens. He thinks he can walk to the bed and lie down, but he doesn't make it there. These falls are very scary for Mom. Imagine hearing a loud thud and not knowing if your husband is ok. When this happens, she has to call Mr. Phil or my husband, Jack, to go help him up. He has broken toes and his nose from these falls. He fell twice a few nights ago and was very banged up. Then, he fell again last night. He has an artificial left knee and feels like he has damaged it from falling. His shoulder is also terribly sore. He winces in pain when he stands up and move. This breaks my heart beyond belief to witness. Isn't it enough that he has all these other problems? Why must he now be feeling so much pain???
Please pray for protection from falls. He is slowly realizing he needs to stand beside the bed for several minutes so he can lie down if he gets lightheaded. I am so fearful of a broken bone or, worse, a head injury from a fall. We covet your prayers in this area.
I know I have totally overwhelmed you...feel free to ask questions!
No comments:
Post a Comment