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By annwood On 2009.01.07 22:30
I want to share some good news with all of you. There is a company in Philadelphia that tests new drugs and there is one currently being tested for PD Dementia. This company has asked me to go on a speaking circuit with a neurologist to address PD dementia, caregiver stress and other problems of PD not addressed by physicians. As you know I have spoken on this topic in the past and I am excited to be asked to represent so many of you. I spent a day in Philadelphia doing media training, or how to speak on television and how not get into a difficult situation. It was quite interesting. So many of these foundations try to put a happy face on PD and so many docs fail to enlighten us on just what may happen. Someone needs to let people know just how bad it can be. Right now we are waiting to see what programs might pick us up. I will keep you updated.

By Tara On 2009.01.07 23:32
Thank you, Carol!

Word really does need to get out about the pitfalls of caregivers. Until that happens, other people will just go on blithely thinking that it's no big deal to have to take care of someone with this disease.

If I have one more person say, or imply, "you're young, you can take it," or "you're not suffering -- HE'S the only one suffering," I'll scream or shoot somebody! I've already stopped answering people who tell me, "you take care of him, now." I'm still not sure what to do about the ones who ask, "how's your daddy doing?" but never ask how I'M doing.

Speak up for us, Carol! We sure need it!

By annwood On 2009.01.07 23:35
Mine was "Poor Dad" never how are you doing or the big one - how can I help.

Thank you for the words of encouragment.

By deflo On 2009.01.08 07:45
It's great news that finally caregivers are going to be heard. My husband's neuro never told me how bad it was going to get, and he specializes in PD, he even has a PD center. I guess he figures I could find out on my own. I think the problem is that the neuos are so focused on the disease and/or a cure that they don't see the whole picture. Even his primary care doc seemed surprised that I had a melt down and needed to go on anti depressants. I know what you mean about people not asking about me. All the focus is on the patient, but I do have caring friends and family that make sure I take care of myself. The rest of the world doesn't get it. They don't deal with the 24/7 that is constant and unrelenting.

By walkinthewoods On 2009.01.08 10:29
I have been so fortunate in the way of my FIL's doctor's do seem to realize somewhat of the impact this disease can and will do both to the patient and the caregiver. Each one of my FIL's doctor's have told my husband and myself, they understand how difficult it is and appreciate that we have stood by my FIL both mentally and physically. One of my FIL's doctor's even told my husband how very lucky he is to have me. My husband said I know and the doctor said "no, I mean you really truly are blessed." All of us in that room that day understand even without the words that I am the anchor in this storm. Unfortunately, my FIL never seems to respond on mine or my husband's behalf about the care we give him but I do believe somewhere deep inside he realizes.

There are days that I just feel like screaming at the top of the highest mountain "I can't take it anymore" but I don't. I just dust myself off and keep moving forward. Only because I know if my life was dealt this same sort of hand, I would hope someone would stand by me and hold my hand through it.

By Mary On 2009.01.08 10:38
I truly feel that unless you have walked in a caregiver's shoes, you cannot have any idea of what is involved. You can guess but would not come close. I was not prepared for what I took on caring for my father, but even if I had known, I would have taken him in. I cannot say it enough .... it is so nice to have this forum to have access to people who are walking in my shoes. Thank you again and again for all of your honest messages and responses.

By aduvall66 On 2009.01.09 11:56
This sounds so exciting! Please keep us updated. I think dealing with the dementia is the worst, and it is so different from Alzheimer's dementia. We as caregivers are not prepared to deal with this. I think the neuros should prepare us for the worst case scenario, I realize this is a designer disease and no two PD patients are the same. NPF has a great booklet on MIND, MOOD & MEMORY, it is excellant and it has opened up a whole new world for me. I have found it very helpful in dealing with my PWP (husband). Just prior to the holidays, he totally was off the map and it was a UTI. He became a person I did not know and I was ready to put him on the curb with the trash. It was a horrible two weeks on the antibiotics as this worsen his PD symptons. He is very much improved and his behavior is passive now, without agitation or sundowning. There is never a dull moment with this disease. I just discovered this site and it is a blessing!

By annwood On 2009.01.09 13:10
Welcome and I hope that you will stay with us.

I would be interested in how you feel Alzheimer's and PD Dementia differ. I have never been around an Alzheimer's patient and that question may come up. I already know from first hand experience more about PD Dementia than I care to know!!!

I'm so glad the antiobiotics for the UTI cleared up your husband's behavior. It seems like infections or any other stressor greatly exacerbates the PD problems.

By bandido1 On 2009.01.09 14:21
Annwood: Congratulations! THey could not have picked a better spokesperson and the topics are in need of much discourse and study. I am a study in progress since I was diagnosed as an Alzheimers candidate 3 yrs ago followed by the PD diagnosis. My primary RX'd Namenda and my neuro RX'd Aricept. I still have short term memory problems but can recite virtually all of Paul Revere's Ride from high school days as well as the lyrics from most "oldies" from my generation. However, I forget peoples names more often than not! I hope your tour gets you to Temple University (my alma mater). Feel free too use my stories and posts. Also, if you run short of references, I can introduce you to a fellow PD patient who lives in Gettysburg. she just got out of surgery but is a vitual wharehose of reference materials. Bob C

By Pearly4 On 2009.01.09 17:19
Wow - definitely a winning situation for you and us! It's nice to know someone will be speaking for us.

By rajenriver On 2009.01.10 10:29
How exciting! Hoping that it will show in the Des Moines area. If not, if there is ever a DVD, let us know.

By annwood On 2009.01.10 12:24
I am relying on all of you to tell me what is difficult in your lives as caregivers. (You PD pts tell me what is the worst for you). You were kind enough to help me this past summer when I was getting my presentation together and that in turn led to this opportunity. When I gave the talk we were told that the entire day of lectures would be made available to people but as yet that hasn't happened. I think I will call them on Monday and check on the status of that. The "road show" schedule has yet to be set up but I will certainly let you know when it is. The company is talking about the Today Show which would certainly make it available to many people but remember they only give you a few minutes. The idea is to create an awareness of PD and caregiver issues for the public. I am certainly not faulting the foundations because they generate money for research but they seem to want to paint PD as a disease that "isn't that bad". We all know better than that.

By bandido1 On 2009.01.10 16:39
Annwood: If you will send your email address to I will pass along a list of PD SYMPTOMS I HATE for use in your lectures. I dont want to include them here because I expect to be a contributor to the comment section of this forum and I believe this piece will be included in a future release. Bob C

By lynn On 2009.01.10 21:03
Tara-I couldn't agree with you more about the attitude taken so often toward the caregiver. My sister once told me that it wasn't about me that it was about him. She's been a nurse for 30 years. Her words cut deep at the time but I realize now that she just doesn't get it. PD affects both the patient and the caregiver.

By deflo On 2009.01.11 10:49
Hi annwood, again, I can't thank you enough for getting the message out there. I am sitting here in tears as I write this. It's been a rough morning so far, my husband is going downhill rapidly. Since his fall this week it seems his symptoms have worsened dramatically. On the comparison of AZ dementia and Pd, I have a dear friend who's mother has advanced stages of AZ and another who's mother just died from complications of AZ. We often compare notes and while there are many similarities, I have noticed one big difference. It seems that AZ patients are consistant in their behavior. My friends always knew what they were going to get, mostly. I never know from one minute to the next what mood, behavior or words to expect and it keeps me on a tight rope. I feel like a lamp with exposed wires, touch them and you get a shock!!
What are the things about PD that I hate the most? well apart from all of it, I think it's the dementia. I can handle the physical symptoms, even though they are also tough, but it's the dementia that is the worst. There is nothing you can do. My husband has been on Exelon but we can only get him to 3 mg. because he has terrible reactions at higher doses, his neuro just tried Namenda, but in one week he was so bad I had to stop it. The physical symptoms are straight forward, the demtia is that boogy man lurking in the closet just waiting to pounce.

By Pick On 2009.01.11 15:58
I join bandido in his offer...feel free to use any of my stories/posts or to contact me by email. Even though my dad supposedly has psychosis, not dementia, his symptoms are the same. He's even on Exelon and Gabapentin now.

My dad and I have been participating in this study for a little over a year. They are based in King of Prussia. I'm wondering if that's who you're working with.

According to one study I've seen, the dollar value of caregiver services is estimated to be over $300 billion per year (Arno, Peter S., "Economic Value of Informal Caregiving," presented at the Care Coordination and the Caregiving Forum, Dept. of Veterans Affairs, NIH, Bethesda, MD, January 25-27, 2006). Yet our contributions remain largely unacknowledged and our concerns unheard. But of course what caregiver has time to advocate? I barely have time to post on this forum. Hopefully you can help change that. I want there to be more studies such as the ones found here and I want them to be specific to PD caregivers: that demonstrate the societal impact caregivers make, and the toll it takes on us financially, physically and socially.

Specifically with respect to PD, there needs to be much more support and education for family caregivers on the cognitive effects of the disease and medications. For me personally, ever single thing I've learned about how to manage my dad's behavioral problems has been through either trial or error or via the internet. That's absurd. Recently he has started to make sexually inappropriate remarks.....causing some of the CNA's to quit....and I've received zero advice or support from his medical team. They act as if he's the first hypersexual patient they've encountered. Oh come on!

Go go Annwood!

By aduvall66 On 2009.01.11 16:28
Hi annwood, My Mother had AZ and passed away two years ago on Christmas Day. She died of aspiration pneumonia. She was a pleasure to care for compared to my husband. Brain functions in PD differs from that seen in AZ. In PD, attention, memory, and learning,executive functions and visuospatial functions are the areas usually affected. Language, thinking and reasoing tpyically remain intact. A report on this was in "Journal of Neurology, Neurosurgery and Psychiatry, Oct. 2007." Parkinson's Disease and the Family by Dr. Nutan Sharma and Dr. Elaine Richman is another great resourse. As well as, and From my own personal experiences with neurological diseases, I find Huntington Disease to be the only one worse than PD. Even with ALS and MS, they keep their minds and personalities. PD is definitely a roller coaster ride. I can deal with the physical symtons, but the dementia is the WORST.

By Tara On 2009.01.11 18:22
I agree that the lack of information for preparation and the dementia are both the worst. Being prepared should never be a patchwork, connect-the-dots, trial and error effort. Of course, this comes about because, like Pick said, no one has the time to advocate. And, on a practical level, there's no real money to be made in giving advice to caregivers, and that is probably the real reason it doesn't exist.

And yeah, as far as the day-to-day living goes, it's the dementia that's the worst. I think the physical stuff could be better tolerated if I could at least get some intelligent conversation out of him.

The dementia is connected to what is probably my central problem: lack of sleep. I can deal with just about anything if I've had a good night's sleep. Unfortunately, that is just a dream (no pun intended), because I never know when Dad is going to get up in the middle of the night and burn the house down trying to fix a midnight snack, or fall and bust his head open. This leaves me frayed and exhausted even in the early morning, never mind the rest of the day, and results in me being a time bomb just waiting to explode, and when I do, it causes more division between Dad and me, with more paranoia on his part and more feeling like a slave on my part, fueling more anger and resentment for both of us, and who can go to sleep with THAT on your mind??!!

And all of this is exacerbated by the fact that I never know what's going to happen next, and "staying on guard" all the time only rubs the nerves even worse, until finally I feel like I would be better off not feeling anything at all. This makes me feel like I have to choose between my father and my humanity.

Can I also mention the STINK of what's in the diapers and the urinal?

I was reluctant to give any real answer to this question, because I was concerned that my answer would be either too short and trite to be of any use, or so long it might as well be a book!

When will you be entering the speaking circuit? I'll try to have a better answer by then.

By annwood On 2009.01.11 19:38
Thanks to all of you for your responses - it takes me back to my experiences and I hope that I will be able to relay this need to others. Keep the post coming and keep your chins up!

I am waiting to hear when we are scheduled to speak. Everything sort of came to a stop during the holidays and now we are competing with the Innaguration. It willl happen.

By the way, I agree that the diapers are pretty bad.

By deflo On 2009.01.11 19:50
This is for Pick and the inappropriate sexual remarks. About 2 yrs ago I had the cops at my door ready to arrest my husband for making sexual advances on a 20 yr old man in the steam room at our community's club house. Since there were charges against him I had to hire a very expensive lawyer to help us out of this mess.. His neuro didn't think it was the pd causing this. My husband NEVER was inappropriate EVER, he was always the perfect gentleman and every one loves him, so to inexplicably start this behavior was a mystry I did a lot of research and found out that it's not so uncommon. This is one of the behaviors that is swept under the carpet. I would love to hear from others who might have experienced this problem. It has since stopped, but then he doesn't go out so there is no opportunity for him anymore.

By Mary On 2009.01.12 16:52
Tara, your comment on the "STINK" in the diapers made me laugh and it is really not a funny smell!!!!!!!! Thanks for the laugh! I have never smelled anything like what my Dad's depends smell like.

The incontinence in urinating and bowels is my most difficult task at this time. My Dad does not have dementia but his short term memory is failing. Is that the start of dementia? His long term memory is better than mine!

Also, another topic that I would like addressed for caregivers is when to know if a nursing home is a better choice. I hope I never have to make that decision but input on that would be nice. Thanks, Mary

By Pick On 2009.01.12 18:26
My answer to "when to know if a nursing home is a better choice" is this: when my dad requires skilled nursing. CNA's, Home Health Aids and typical family members are not qualified to insert catheters, draw blood, inject medication, etc. We do not have sufficient funds to hire a RN to perform these tasks. But with 1 on 1 (sometimes 2 on 1) attention, we can attend to his current needs (assistance with ADL's, meal prep, medication reminders, etc.) better than a skilled nursing facilty.

@deflo: I too would like to hear more about how caregivers manage hypersexuality. So far my dad's doctors + google have provided little useful info. The owner of the home health aid agency we were using up until a week ago handled it like a twittering school girl....very unprofessional. It's part of his disease....he doesn't even remember when it happens. This is so frustrasting.

By annwood On 2009.01.12 20:04
The hypersexuality is a difficult problem and the neurologists are not comfortable discussing it. My husband began experiencing the problem about 2 yrs before he had obvious dementia and before the DBS. His took the forms of watching pornography on television, buying porno books, and making frequent unreasonable demands. This was never his nature and in fact he was somewhat straight laced before that time. I attributed it to the MIrapex, although his neuro did not. When the mail contests started we finally stopped the Mirapex, which helped but did not totally stop the behavior. He would get up at night after I had gone to bed and get porno on the cable TV. The first I knew of it was the cable bill which listed all of them by title. The cost for the one month was $250.00! As I said that was before the dementia became obvious. The behavior persisted even 3 yrs after stopping the Mirapex; however, his physical health and dementia were declining so fast that it seemed less. Two months before he died he was confined to bed, using a walker, etc. I came home one evening to find the caregiver in the driveway and my adult son upstairs with my husband. Apparently my husband had actually run down the hallway naked chasing the caregiver. She said that before that he had grabbed her as she was getting him ready for bed. It is my feeling that the frontal lobe, which controls our behavior, and the lymbic system become involved with PD and the controls just aren't there anymore.

By Pick On 2009.01.12 20:27
Ugh. It's so hard because it is a legitimate part of the disease process, yet at the same time it's not fair to expect anyone to endure sexually inappropriate remarks and behaviors. IMO it's as much of a violation as if the patient were physically violent.

My dad's situation is confounded by the fact that he has severe neuropathic pain in his genitals which require frequent "adjustment" (i.e. when he is sitting or lying on his scrota...or when the caregivers yank up his Depends too quickly). His fine motor skills are so shot that he must ask for help and some caregivers mistakenly think he is asking them to manually stimulate him. Hey, I strap on the glove and adjust his "guys" all the his daughter believe you me I would run screaming from the room if I even suspected he was asking me to...ugh. Sorry if I've embarrassed anyone.

I just wish I knew better how to deal with it. I've found very little info on it. I understand that some believe you should try to observe what events/comments might "cue" this behavior????? I feel so lost but I'm so gratefull you and deflo are willing to speak candidly about this.

By deflo On 2009.01.12 20:51
Pick, you would think that home health aides would be schooled in the behavior issues of PD, or any dementia for that matter. My husbands PT told me that it's more common than people are willing to admit. You are right about not remembering, good for them, it's the rest of us who have to do damage control

By susger8 On 2009.01.13 07:47
I don't think most people, even caregivers of PD patients, are aware of the hypersexuality issue. I didn't know about it until I started reading posts here. My dad was buying porn for a while and I didn't realize it might be related to the disease. It really wasn't much of an issue, although when he had female health aides they were uncomfortable with the DVDs and magazines being around. Then last year, Dad called 911 and told them his (male) health aide tried to molest him. This was obviously a delusion, and the police officers understood this, but it was quite distressing for the aide.

We've been cutting down his Requp anyway because of his dementia and haven't had any more incidents like this, fortunately.

By deflo On 2009.01.13 08:34
I am so glad to hear that this is something related to PD and not just some latent sexual fantasy coming to the forefront. When I was dealing with the criminal charges, I had to do a lot of digging to even convince his attorney that he wasn't just some sexual deviant. I managed to find some articles on this and printed them out. THe attorney was able to get the charges dismissed based on the articles saying that this type of behavior is indeed caused by the Pd and/or drugs. His neuro reluctanly finally accepted it, he is a PD specialist and even he had a hard time agreeing.

By annwood On 2009.01.13 12:40
Too bad that you had to go through that. My husband's neuro had to go to court to defend a PD pt who had tried to hook up with a teenage girl on the internet. It was a sting operation and he was caught.

By LuLuBelle On 2009.01.14 23:15
Hi - I am new to the forum and from what I've read so far you all are much needed friends. I have felt so isolated and overwhelmed and at least now I see I am not alone. I am going through caring for my dad with PD dementia. Every day is a new struggle. My emotions swing wildly between anger, frustration, guilt, grief, compassion, apathy and depression. I know the man I am caring for is not my daddy. There is an ugly disease that moved into my father's body and stole the man I always adored. However, ugly man is who I have to care for and I feel like I am in over my head.

My dad's neuro has said that PD Dementia is worse than AD dementia. She's also said more than once "your father belongs in a nursing home". Well that is easier said than done. In my heart I want to take care of him, but every day it gets harder and harder. My husband and I bend over backward to make him comfortable but he constantly complains and is never happy. He accuses us of doing things or "playing tricks" on him. He sees things that aren't there. He is impossible to converse with and often responds inappropriately. He has also made inappropriate remarks - some of the sexual nature and most just plain rude.
He has lost a tremendous amount of weight - 75 lbs. - and looks like he's been in a concentration camp. He eats - just not a lot. Although he is addicted to sweets. Just today I discovered he ate 1/2 a 12oz. box of Whitmans chocolates in 4 hours!!

My dear husband has been a saint through all of this. He has even cleaned out my father when he was impacted and couldn't go to the bathroom. The bathroom issues are a whole different story. I spend a large portion of the day doing what I call hazmat. I am armed with my clorox clean-up and scrub brush and towels constantly disinfecting the bathroom. About a week ago my husband went to the bathroom to check on dad only to find dad giving himself an enema standing up in the middle of bathroom! Needless to say we have now hidden the enema bag.

Well, I could go on forever, but I know each of you have "been there done that". I could just use some encouragement and any suggestions you may have to offer on how I might cope. I agree with many of you that the physical/medical side of things is a piece of cake compared to the mental side of things. From one minute to the next you don't know what or whom you are dealing with.

Anyway, I welcome your reponse - I'm drowning here.

By annwood On 2009.01.15 00:03
Welcome! It sounds as if you found us just in time. As you can see we have no definite answers but we are here to make suggestions and to help you and your husband through this experience. Perhaps what we have to offer that is the most valuable is the knowledge that you are not alone. Most of us have or have dealt with a situation very like yours.

The nursing home decision is a hard one and one that only you can make. When my husband got to the same point as your Dad I placed him in a very good nursing home just a block from my house. They made me take him out 3 weeks later because they were not able to handle his behavior. (Before kicking him out they were calling me 3 & 4 times a day to come over and they never got his medications right. Nursing home care is an entirely different thread.) At that point I brought him home and he died three months later. As a general rule a PD pt who has experienced that much weight loss and that degree of dementia is in the final stage of the disease. As you have no doubt read my posts you know that I feel as if I also lost my wonderful husband two years before he died and I was left to care for someone that I didn't even know. It is just the most gut wrenching thing one can ever experience and I am sorry that you are going through it. You are fortunate to have a wonderful husband to help you - let him know that!!!

Have you contacted Hospice? They are WONDEFUL! They can help you care for your Dad at home and help you through much of this. Your neuro will have to give you a referral but that should not be a problem. Hospice also has respite care which allows you to place your Dad in the inpatient facility for 3 or 4 days free of charge and if you need longer the cost is not prohibitive. Just a suggestion.

As for the emotions - welcome to the club. All of us experience this and it is a natural reaction to a difficult problem. I have written a paper on the subject of Caregivers and if you feel comfortable sending me your email I will be happy to send it to you. My email is

Again welcome and stay with us - we all care.

By LuLuBelle On 2009.01.17 22:59
Thank you for the encouraging words. I wondered about Hospice as my best friend just used them in caring for her dying mother. She said they were awesome. I can't tell you how much it means to have found this forum. Because I am so tethered at home I am glad to have located some support. And don't worry, I tell my husband all the time how terrific he is. I couldn't care for my dad without him!

Oh, I do have a question for all. When your PWP has a fall do you find that their behavior changes afterward? I think I am seeing a pattern with dad's behavior and dementia worsening after he has fallen. Is that typical?

By Life With Shaky On 2009.01.18 08:32
Regarding the caregiver issue - somewhere floating around, I haven't been able to get my hands on it yet, is a film specifically about the family caregiver. From what I understand it was made by a woman taking care of her elderly father (he didn't have PD) and it's being used to get congress to understand the needs of the family caregiver. I think a few states have already passed laws that family caregivers get paid a regular salary, because of this film.

It's too bad stuff like this isn't more widely known or talked about.

By Tara On 2009.01.18 21:07

I don't know of the one you're talking about, but there are two documentaries that maybe people should take note of.

The first, from 1994, is self-explanatory: "Complaints of a Dutiful Daughter." The other is a 1997 five-part Canadian television series, "Caregivers."

Here are the IMDB entries for both, although there isn't much information about them, and I cannot provide any more than this:

I guess the reason there isn't more attention paid to productions like these is that it's such a downer for those who don't have to go through it.

By annwood On 2009.01.18 21:51
I think each fall frightens the person more and they become more disoriented. The dementia can also result in more falls because the patient is unable to remember that they shouldn't walk, shower alone, etc. There were days when my husband would fall 2 or 3 times.

By deflo On 2009.01.20 09:40
I too think the falls affect them tremedously. My husband fell 2 weeks ago and broke his nose. About a week later I was going through hell with him. I thought I would have to put him in a nursing home and I thought he was in the end stages. Then, he just snapped out of it, he's back to his pre-fall self and I am amazed. I also started him on coconut oil for the constipation, that has helped tremendously. It's just two tablespoons of extravirgin coconut oil a day. I put it in a smoothie, which he loves and now he isn't constipated anymore. I also read the article by the Dr who used it on her husband for AZ and had remarkable results. and who knows, it might be helping with the dementia. He seems much better, way more with it. Hey, I'm not complaining, just thrilled, here is the link to the article.

By LuLuBelle On 2009.01.21 01:03
It's almost 1 am and Dad is in his room hallucinating. He wouldn't take his 12 am meds from my husband. I finally got him to take his meds but he is seeing things and very upset about the people in his room. I've tried to sooth him and even sing a song to him that he would sing to me as a baby to get him to go to sleep.

I am at a complete loss. I am heartbroken to witness my dad like this. Funny though...I can't even cry. I just pray that God would take Daddy home.

By kwannberg On 2009.01.21 08:12

I know where you're coming from. We just put my Mom in hospice. She's at her retirement residence -- now on the assisted living side in respite care. We have no idea which direction she's headed -- the nurse on Sunday said that we'd know in a week which direction she was going -- rally or decline. I've been feeling really, really guilty about the way I feel about it. I've been praying for her comfort and peace, but not for any recovery. In fact, it would be a great blessing to my Mom for her to go to God. She want's to be done.


By LuLuBelle On 2009.01.23 20:01
Dad's dementia and hallucinations have escalated. He is seeing things day and night. Last night he was in bed talking,yelling, pleading non-stop for 2 hours to my brother who wasn't there. Dad also fell today...again. He was trying to get out of the way so the "lady in the corner could get by". Of course there was no lady. We have an appt. with his neuro on Tuesday and I hope to get some kind of direction because I am at a loss.

By LOHENGR1N On 2009.01.23 23:52
LuLuBelle, Maybe a change in med's will help? I have a friend, we were coworkers, He developed PD about one year before Me. Well to shorten this up, he developed hallucinations when the Neurologist upped some med's and introduced a couple new ones. His wife walked into the living room and he was chatting away with "little people" over in the corner. She asked where and He responded over in the corner there can't you see them? When the Neurologist cut back the drugs the little people disappeared. I know that this isn't the case in every situation but it won't hurt to ask his Neuro. My friend also suffers falling throughout the day. I've seen Him fall up to six times in a row just going from living room to kitchen. In the course of a day he sometimes falls probably 50 times. He had an operation a little over two years ago on his knee, he fell and split it open and it couldn't heal because He falls so much on it. Take care, best of luck and hang in there!

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