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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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Just wanted to check back in here. Been busy since we found out my dad has a lymphoma. So many doctors to see! We have a first visit with an oncologist soon and a first visit with a neurologist that came highly recommended.

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.
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My husband had LBD. He had been misdiagnosed with Alzheimers and Parkinsons. the meds for both of those made his LBD symptoms worse! Get a proper diagnosis and the proper meds. Willows is correct; there is no cure and probably never will be because of the money to be made but the same is true of cancer and all the other long term illnesses. However, without the proper meds, my husband was out of control...hallucinations, combativeness, aggression, depression, wandering in addition to the memory loss and slow gait and difficulty swallowing...and a myriad of other things. He went from being a kind, intelligent, caring person to someone I didn't know. It was horribly frightening for both of us. I believe had he been properly diagnosed initially, his quality of life (and mine) would have been far better longer than the 2 months we had after his decline started racing downhill at lightning speed. I would definitely get him to an Ophthalmologist very quickly. You don't want him to go blind. That would be terribly frightening for him and make his symptoms worse, I'm sure. God bless you both.
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Not sure how old your father is but the eye issue might also be a retina coming detached. I was told by my eye doctor that if I have something that looks like a shade coming down that I should see him immediately because it might be the retina becoming detached. Not that I want to scare you but that is also a possibility. Hope things straighten out for you
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For Neomia give a hug
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?
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I've been caring for my MIL with Lewy Body and Parkinsonism for six years now, and I can certainly sympathize with your concerns. I definitely recommend seeking out a good neurologist as soon as your dad is up to it. In the meantime I also highly recommend checking out the "Lewy Body Dementia Association" website (lbda.org).

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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My husband has Alzheimer's + Lewy Body. The first symptoms I noticed are he doesn't swing his arms when walking and he has a set look on his face (poker face). Also walks slowly ( not a shuffle) and sees things that aren't there. The meds are the same except maybe Parkinson drugs at some point.
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You said your Dad has Macular Degeneration.....I also have this disease of my eyes. If I have my eyes closed for a time and then open them, both eyes have huge black spots in the center of my vision. My doctor explained it as just part of the disease progressing .....I hope you find answers to the other questions.
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My father had what his doctor called ocular migraines during which he would lose part of his field of vision. If I remember correctly, it was the bottom part of the field, so that if he was trying to read, the bottom part of each letter was missing. He could make it go away by drinking ice water.
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All dementia meds are useless, but they certainly add to the coffers of the corporate pharmaceutical vultures. I took my husband off Namenda quite some time ago for the second and final time. He does better without it. No, I did not ask the doctor. I know my husband far better than his doctor knows him. You can continue seeing a doctor and asking him/her questions, but doctors don'.t know squat about dementia. It is what it is, and all the doctoring in the world is not going to make it go away. I am my husband's doctor now, and it's gong to stay that way. I strongly urge you to read the book by a renowned neurologist, which is entitled "The Myth of Alzheimer's." There will NEVER be a cure for AD, but they want the money to keep flowing in so.....

As William Shakespeare once wrote in his play "A Midsummer Night's Dream,"--"What fools these mortals be!"
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no one addressed the black spot in field of vision. does anyone know what may cause this . my mil complains of it off & on, but is she lays down for a while it seems to go away.
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Thanks all! I do give him coconut oil and B vits already! No acting out of dreams that I have seen at least, but he does often yell things out while sleeping.... We haven't seen a neurologist yet. He has been mostly treated by one doctor for many years, and it seems like nothing much was being done until I showed up. :( I didn't even know anything was wrong because he was telling me his health was fine! As an example, he kidney function is so low he is barely above dialysis, and yet apparently no CT had been done! I was trying to get help for his back when they sent him for an MRI and found out one of his kidneys is swollen, which led them to find out he has a lymphoma pressing his ureter closed! Why was this not discovered considering his low kidney function?! Sorry, just venting, but all just seems shocking to me. I guess seniors really are second class citizens unless they have somebody advocating for them. :(
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See my answer to the other question about alzheimers. Coconut oil helps several conditions to improve, It relieves symptoms due to medium chain trans fatty acids and ketones. 3 T. a day works well mixed in pudding or yogurt 1 T 3 X daily. Here's the link to the doctor who brought her husband back home from full time care unit after initiating the coconut oil. ocala/article/20130331/ARTICLES/130339991 Also have a B vitamin check done. This is typical of B deficiency. My neurologist found a B deficiency when I was having confusion and gait problems.
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I am so sorry you are dealing with so many issues! Does the same doctor deal with all of these? I think for a diagnosis of the specific kind of dementia you will be best served by taking your father to a specialist who treats dementia, such as a behavioral neurologist and/or a geriatric psychiatrist.

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.
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My husband has Parkinson's Lewy Body Dementia as diagnosed by his Neurologist last summer. His Parkinson's symptoms were very minimal with very limited tremors or jerking motions. At best, he only jerks infrequently when at full rest. He does sleep extensively to the point of being scary 18-20 hours a day with 5-10 minute broken intervals. He is currently taking Sinemet 3x's a day (low dosage) and Rivastigmine 2x's a day totalling 6mg. His cognition seems to be the only thing that is really affected by his diagnosis. While he does have a slow walking pace and abnormal gait, he has not had issues with balance, falling or some of the more typical symptoms associated with the disease. As I said before his LBD has manifested itself cognitively. He has very poor short-term memory but can remember anything you ask about years gone by.

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.
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check for normal pressure hydrocepilus My husband developed severe waking problems and he had fluid on the brain. put a shunt in spine and he is walking good again. did not help memory.
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I would say after dealing with LBD for 8 years that there is a chance he may but I would not be certain. As I get older I have involtary movements in my legs. My wife who has LBD, has been dealing with most of what you say except her memeory is much worse. She is on Namanda and Exelon patch but I see no benefit from them. I did at first but after 6 months on named and two years on Exelon going all the way to 13.3MG andnow back down to 4.6, I see no benefit. In fact at her next appointment with Georgetown I'm going to request she be taken off both. Hope this helps
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