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My mother is 61. She has started falling for no reason and has what I call a shuffel when she walks, or she will be walking and it will turn into an incontrollable run and then she will fall. She recently has told us she is hearing people talking that aren't there when she is lying in bed coming from another room. Drs here in Nova Scotia, Canada are few and far between and no one has done anything. We don't even know what's causing all this. Does it perhaps sound like Lewy Body dementia to anyone? I have no idea what to do.

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That’s how my husband started with Parkinson’s. Nonstop questions all day long. I don’t remember now what the questions were about, but they would drive me crazy. Then a neighbor told me when he went out for the mail, he would start walking but it ended in a full run and he would grab the mailbox to stop himself. At that time he could still grab on to the mailbox.

Yes, it was Parkinson’s and dementia showed up quite quickly. I could keep his legs strong by taking him to the gym to bicycle. He kept his balance but that ended also. When this started he was only 62.

No victim of this disease progresses in the same way. I know people for years who are showing no signs of dementia, or loss of balance so bad that they can’t take a few steps without keeling over. Everyone is different.

Fast forward 5 years and now he’s in a memory care home, 100% in a wheelchair. I tried upping his meds, lowering them, exercise. This disease can be unrelenting for some and others don’t get these unpleasant side effects.

You need a movement specialist Dr. And they specialize in Parkinson’s. There are drugs that help with the hallucinations. The one we used is Nuplazid, but it’s hugely expensive. They must have other types of meds that will help them. The nightly leg cramps, they need a carbidopa pill at bedtime and that will end them. Keep them hydrated during the day.

You must find a Neurologist, and they’ll get the brain MRI done, and bring your list of symptoms. Everything you notice is symptom. It will help them.
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Reply to Rosemary44
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Has she been tested for uti’s? My mother gets delirious and it’s always a UTI.
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Reply to Flatbellygirl2
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research and stay on top of it- I would even go to the site- multi symptom checker. Maybe early onset Parkinsons. Not sure about the auditory hallucinations. My mother has the full on Lewey body Parkinsons with the hallucinations visually. Sporadic wacky behavior and spurts of confusion etc. But she is also elderly . Any tremors at all? that is usually one of the very first signs. From what I have seen- the Lewey bodies do cause hallucinations and "tangles" in the brain so that completely lucid one minute then not the next. up and down type of behavior.
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Reply to Anniepeepie
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Roxie0916 Oct 13, 2018
Definitely have her tested for Parkinson’s. Unfortunately it is not just a disease of the elderly. Lewy Body is the is the type of dementia that goes with Parkinson’s. The sooner you have her tested, the sooner you can get her on meds to help with some of the symptoms
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Listen to your mom and don't panic she isn't crazy or doesn't know what she is saying bcz if you question her I bet she will tell you she has done the talking before when she wasn't like this. My mom is doing the same thing but older. I know you have heard there are many many that can do what your mom is doing and there is absolutely nothing wrong with them. Now the falling...does she have slippery shoes or socks on when she starts running? Has the floor just been mopped? She tripped over her feet? With dealing with my mom there is so many things that are happening, I just accept that some of it has always been her and some is bcz of the dementia with mixing things up. Still her bcz she always bounce back! Extremely strong will. So let your mom tell you what they are saying, and smile. It could be an ancestor that you've never met!
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Reply to MeTooSmile
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Saraplanetta:

Have her checked for early Parkinson's.

Or other disorders that effect dopamine levels.
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Reply to Heather10
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Hi Saraplanetta123,

I'm so sorry to hear of the difficulty your mother is having.... Especially so young. My mom is 72 and was diagnosed with Lewy Body Dementia 2 years ago but I suspected it a few years before the diagnosis. The reason I felt compelled to write to you is just to give you advice that I am so glad I received early on. Wherever you go to have your mother evaluated..... Please don't allow them to give her Haldol. It's more than common for this drug and many other similar antipsychotics to be given and it is detrimental to someone with dementia.... Especially LBD! I have heard more stories of this happening, and a person's loved one passing away shortly thereafter, than I care to count. I pray your mother has something treatable and not dementia. Should you find otherwise and need someone to talk to I would be glad to help any way I can. Take care.
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Reply to WellBredThreds
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Dear Sara,

I’m sorry you are having to deal with the possibility of Lewey Body dementia. It was one of my mother’s initial diagnoses, but we have since gotten a more accurate diagnosis by working with a geriatric psychiatrist who patiently catalogues all of her symptoms and medical history.

We also live live on an island, and I empathize with your situation of being isolated from resources.

I recommend that you try to find a geriatrician or neurologist who works through tele-health/tele-medicine.

You can start with your health insurance (national health service) by looking at the list of these specialists and asking if they can consult by phone or web-conferencing.

You can contact the nearest medical school - speak to someone in the departments of neurology, geriatrics or family medicine and ask if they know of tele-medicine resources.

You can contact the nearest or largest medical centers/hospitals and ask if they provide tele-health services.

Ideally, you will want her PCP to work closely with a specialist. But, you may need to do the research to find a specialist on your own.

Getting a good consulting physician will be helpful to you and her PCP. If it is Lewey Body dementia, you will want someone knowledgeable to advise on managing the symptoms as the disease progresses.

Very best of luck to you.
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Reply to Gardens
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It is amazing that so many of the conditions-diseases present with the same symptoms. My husband also has the shuffling gait and I keep reminding him to take long slow steps and take his hands out of his pockets for balance, but within a few steps, he starts the "running, bent over thing and in the last two months he has fallen 12 times. He has gotten a few bruises, but never anything serious, though we have taken 4 trips via 911 calls because he has gotten violent and it frightened me. He was kept under observation the last time, upon his PC doc's advice I was told to refuse to take him home until he was evaluated and meds researched. They had to give him haldol on three of the five nights and did balance his meds, diagnosed with frontal lobe and vascular dementia, but no real improvement in the past month. His PC found a geriatric psychiatrist who takes medicare at least for the eval andi had seen a presentation she gave to my support group. I was very impressed. The best thing is that she is local-only about 4 miles from us. I can only afford the eval, as her ongoing treatment costs $80/month just to be a patient, but I am hoping to get an updated diagnosis and better meds. I will talk to her about the use of CBD oils and a vitamin regimen that was suggested by another contributer as well. I know that it must be hard living in an area with few resources and trying to accomplish things on the phone, but I have had to do that some too. But there are good non-profits for your support, both in person and on the phone. I found them here through a Senior Resource call. I have sometimes, especially recently, felt that I am at that proverbial "end of my rope". My husband truly needs placement and there is no money at all for that, but I live in a state where there is help to get him qualified for medi-Cal. It is a long process, but the folks here at Human Resources were so understanding and helpful. They basically filled out the forms for me. If there is such a system where you live, call them and they will give you a list of documentation you will need to provide. I send care, hugs and understanding.
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Reply to She1934
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You are in NS not Nunavut, it can't be that impossible to get proper medical care. The trick is to put on your Xena, Warrior Princess persona and force people to take you seriously, sometimes accepting the normal standard of care just doesn't cut it.
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Reply to cwillie
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You might have your loved one checked for Parkinson's Disease. My late husband was diagnosed with late onset Alzheimer's with vascular disease at the age of 74. He passed away June 29 of this year, but the last year of his life he started losing his balance quite often, fell many times and had occasional hand tremors. However he only had a few hallucinations during this time. In May of this year, his doctors determined that he also had Parkinson's Disease, he had the shuffle type of walk, fell quite often due to losing his balance, walked stooped over and also would have a blank stare on his face as if he was watching something, yet not actually 'seeing' it. I had to finally put him in a nursing home, for the last two or so weeks before he passed away. My 83 yr. old sister also has Parkinson's disease but more advanced than my husband had. She also has that type of walk where she sometimes gets to walking too fast and seems to lean forward which is caused by the Parkinson's. I was told by my husband's doctors that a lot of times, a person with Alzheimer's will also end up with Parkinson's. Good luck in finding the correct help for your loved one. Prayers for you and be sure to take care of yourself also.
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Reply to stitchintime9
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Lewy Body Dementia, my wife also Suffers. I cared for her about 4 years after I noticed the problem. It finally came to the point that I could no longer care for her and sadly I had to put her in a home. I see her daily and the sickness seems to be moving at a surprisingly fast pace now. Maybe this is a blessing in disguise. Love and understanding is your best and only hope. God bless.
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Reply to lreed2348
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sudden changes can also mean an underlying medical condition. Sounds like you have really crappy doctors over there. you better make sure EVERYTHING is ruled out..but hallucinations it can be an infection like UTI or pneumonia doing it. You better make certain those doctors ruled out everything and look at the actual test results. Blood cultures, urine cultures, x-rays..and CT brain scan to rule out stroke. WBC count..kidney function..etc. if kidneys go bad that too can cause hallucinations.
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Reply to cetude
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My mom has Lewy Body Andy she did have trouble walking (she’s no longer walking due to another cause) and has visual hallucinations. BUT, like others have said, it very well could be something else.
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Reply to mollymoose
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I'm 55, not very much younger than your mother. If I lost my sense of balance, and lost control of my gait, and I started having auditory hallucinations, I would seek urgent medical advice.

It may be difficult to get your mother to a doctor's office or an ER, but you're on the 'phone aren't you? Pick it up and get advice from a qualified medical practitioner. I gather that the correct number to call is 811; or you can check this out at https://811.novascotia.ca

PS - I hope you find Jeanne's advice reassuring; it also occurs to me that an ear infection needs to be ruled out. Your mother's symptoms are alarming, but the cause might be very easy to treat.
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Reply to Countrymouse
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I had those symptoms and it turned out to be a UTI! They cleared up completely when the UTI was treated. My husband had similar symptoms and his diagnosis was LBD. He lived with that for ten years. As Shell says, those symptoms could be associated with a number of different causes.

I think it is very important to get mom in to a doctor, even if you have to travel some distance.
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Reply to jeannegibbs
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It could be, however it could be other things. You should Google Lewy Bodies Dementia. Go under symptoms and see if your mom has more than 2 of the symptoms. Now if you feel she does, does not mean she has it. There are so many diseases that will start off with the same symptoms. When I read your post I thought of four possible causes off the top of my head. So Do Not Panic! Can you take her to an ER? I only suggesting this because in your post you stated that Dr's are far and few in between. If you can get in to a Dr explain your concerns. Tell him/her what you think it might be.
However, there is no one test for LBD. Dx LBD is difficult, it is highly based on the Dr experience. Sorry to have to tell you that. I hope you are able to find some answers.

Good Luck & God bless you.
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