My dad has already been on Alzheimer meds for several years, but his main symptom has been pretty standard forgetfulness and short term memory loss. Recently I am seeing a bunch of other symptoms that have me wondering. I will talk to his doctor of course, but right now we are in a whirlwind of ureteral stent placement and following up on a positive lymphoma biopsy, so it might be awhile before I can get back to other stuff with his doctor....
Some of his symptoms are classic for Parkinsons or Lewy Body, like a markedly slower walking pace all of a sudden, frequent loss of balance, frequent spacing out in a chair and falling asleep during the day and sudden jerky movements.
He has not had any "specific" hallucinations, by which I mean he isn't seeing people or animals or such, but sometimes he will jerk his head suddenly like he saw something, and he has told me about a black patch that comes into his vision, then disappears. Does that sound like a hallucination or more vision related? (He does have macular degeneration.)
The cluster of symptoms I am most curious about are the jerky motions that seem related to stimuli. When he experiences certain pain, his whole body will often jerk in weird ways. And he seems to react to sounds almost as if they were painful. He will grimace and flail if there is a sudden loud sound for example. I have heard about involuntary movements, but haven't been able to find specific information about them in relation to stimuli, so I am curious to hear from people who live with this condition from day to day.
And... even if he does have Lewy Body, does it really matter if he is already on dementia meds? Is there anything different that can be done for it?
It does make a difference to have a specific diagnosis. For one thing, there are different drugs to try and most importantly certain drugs to absolutely avoid. It also can be useful to caregivers to know a little better what to expect.
Does your dad act out his dreams at night -- with his legs running or his arms swinging, etc.? REM sleep Behavior Disorder (RBD) is strongly correlated to LBD. That would be a clue.
The slowed gait, loss of balance, and "frequent spacing out" are all symptoms that can accompany LBD...BUT they can also be symptomatic of several other illnesses /disorders. The sudden jerky movements "that seem related to stimuli" are not symptoms I'm familiar with, but Lewy is a many varied beast. Everyone is different. My MIL had a slow shuffling gait and loss of balance in the beginning - she also suffered with tremors, primarily in her lower extremities, but they were more inclined to occur when she was at rest. Her neurologist put her on Simemet which helped a great deal with the tremors. Unfortunately it didn't help all that much with the gait and balance issues - we did see some limited improvement but only for about a year or two. She's fully wheelchair dependent now.
The black patch you describe definitely sounds like it's more related to his macular degeneration; the hallucinations associate with LBD are almost always VERY vivid and defined. They usually involve "seeing" things like children and animals and generally aren't frightening. Hallucinations and fluctuations in cognition are two major "hallmarks" of LBD.
As far as the dementia meds go, not all are alike. Some work better than others, some people respond well to one type and not another. You don't say which medication your dad has been taking, but the ones that "reportedly" work best with LBD are Aricept and Exelon. A bigger med concern for people with LBD is antipsychotics, which are prescribed for the treatment of hallucinations, delusions, and other psychological disturbances that might cause the person to become frightened or agitated or act out. Some antipsychotics should NEVER be given to a person with LBD - Haldol is one. The one antipsychotic that's considered a reasonably safe choice right now for pts. w/LBD is Seroquel (generic - quetiapine). Thankfully my MIL has tolerated it very well and it's been a godsend, but I've read reports from other posters who did not have very good experience with it. Again, everyone is different.
Yes, there are things other than medications that help. Physical therapy/exercise is one....at the very least a good physical therapist can help your dad with his gait and balance issues, but again, only once he's physically strong enough to handle it.
You have an awful lot on your plate, and my heart goes out to you. Stay in touch. (And don't forget to take care of yourself too!)
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