Does this sound like Lewy Body dementia?
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?
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I, like you couldn't see where his LBD medication (Rivastigmine) was doing anything for him as his short-term memory continues to decline at a very rapid pace. But, having said that, he no longer wanders aimlessly around the house and while sleeping has never been an issue for him, the Rivastigmine tends to knock him out cold and has definitely caused him to lose substantial weight.
He has been told in no uncertain terms by his Neurologist that if the Rivastigmine does not slow his cognition progression, there is nothing else available for him. This is unfortunate because my husband has no other medical issues except this nasty disease of the brain.
So, I would say that while you don't believe his ALZHEIMER's meds are of any value, perhaps some other drug in that line of drugs will be more effective. Like high-blood pressure meds, not everyone is able to see results from their first prescribed drug - it generally takes a series of trial and error meds before the right one works for different individuals.
Speak with his Neurologist and see if it might be a good idea to try a different medication and if that doesn't seem to improve or stave off the progression of his memory loss, then, perhaps he's just one of those individuals who will get little if any benefit from these drugs.
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.
As William Shakespeare once wrote in his play "A Midsummer Night's Dream,"--"What fools these mortals be!"
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!)
The other nutritional supplement is a mineral magnesium often helps restless leg syndrome and night time sleep problems. I give my mother 500 mg magnesium every night at bed time to help her sleep better and I do NOT give calcium since so many foods are fortified with calcium and the calcium is a magnesium protagonist. (it can neutralize the effect). Also back to the calling out at night, could it be a UTI since he has all of the kidney difficulties?
Willows, that is very interesting. Will try to find time to read that book. I have such a hard time standing up to doctors, and I don't have POA yet, so I am not sure I can just legally take him off the meds. He would prb trust his doctor over me on that subject. :) I kindof want to avoid the POA route, but I will probably need to do it at some point.
Calliegirl, sorry you are dealing with MD as well. :( that is very useful to know though. At least I feel like I don't have another mystery to figure out.
I realize I wasn't very specific in my question about meds. I guess I am wondering if Parkinson's has *different* meds than what they use for Alzheimer's, specific to the muscle issues or anything else, and how effective they are. I have mixed feelings about the visit to the neurologist, but at the same time, I think it can be useful to pinpoint types of cognitive issues even when your goal isn't meds. I have a friend who is a psychologist helping me understand this. She talks about "workarounds". For example, if somebody has damage to their brain that impacts their ability to read, sometimes pictures on doors can help navigate which room is which.