“Have you had any hallucinations?” A question most people with PD are asked at each appointment I’ve had with my neurologist.
I always think about my answer, as it always feels like a trap to see if I’m losing it mentally. You see, if I say yes, they may think I’m finally going over the top. I’ve lost it. And if I say no when I really mean yes, do I have to admit that the floaters in my eyes sometimes make me feel like a hummingbird just whizzed by? What to say, what to say…
- Hallucination: something (such as an image, a sound, or a smell) that seems real but does not really exist and that is usually caused by mental illness or the effect of a drug
- Delusion: : a belief that is not true : a false idea; a false idea or belief that is caused by mental illness
- Illusion: a perception that is not true to reality, having been altered subjectively in some way in the mind of the perceiver.
Some people with Parkinson’s disease experience what are known as hallucinations or delusions, which unfortunately can be part of the dementia process. These false ‘eerienesses’ appearing as reality (otherwise known as F.E.A.A.R.), tend to be more prevalant in the later stages of the disease and are more commn in people who have had the disease for a long time.
Many variables exist for hallucinations to be present, but it can be caused by drugs given a person to treat their PD. The type of meds, the dosage, the person – it all comes into play.
When you see things that aren’t there – people, animals, crawly creepy things – these are hallucinations.
Hearing things like a door open or close can freak you out, especially if it didn’t happen. Someone is knocking so you go to answer the door and …no one is there. The phone rings and the same thing. These are hallucinations.
You are reading a book and someone is standing behind you. But are they – really? (You really don’t want to turn around to find out.) This is a hallucination.
You smell something burning and figure dinner must be ready. However, when you get to the kitchen, the cook is reading a book and nothing’s on the stove. You are disappointed. Perhaps relieved. Dinner still stands a chance.
An illusion is a form of a hallucination. You see real things differently from how they really look. For example, the monkeys on the wallpaper appear to be swinging from tree to tree. Or the lampstand may appear to be Uncle Jed. And, the carpet under your feet appears to be moving like the tide coming in at the ocean. (What a nice thought – to be at the beach.)
In all seriousness, hallucinations (or FEAAR) can be quite disturbing, causing much fear and anxiety. There are, however, things that can be done, as with those suffering with delusions.
Delusions are conjured up by thoughts and beliefs that aren’t really there, whereas we learned that hallucinations deal more with the senses. Delusions can include paranoia (no, there are NOT cameras in all the trees), jealousy (no, your 83 year old husband is not having an affair with the 19 year old who lived next door eons ago), and exaggeration (no you are NOT superman).
Hallucinations, illusions, delusions – all scarey stuff. Both for the patient and the caregiver. They can cause problems in relationships. They can leave the patient feeling confused, helpless, misunderstood.
Get medical care/advice and rule out other causes. Get treated, if possible. Don’t count on someone else telling you that you’re hallucinating. They may be delusional. Safety could be an issue so make sure to hide the bats from both the weary caregiver and the wild patient.
It may not be PD that’s the culprit of your hallucinations. An infection that leads to a fever, or somethng else may be to blame for this one. Hopefully.
But then again, maybe hopefully not.
Although Parkinson’s disease is widely known as a movement disorder, people are becoming well aware that it can (and does) include dementia along with its already too long list of symptoms that develop as the disease progresses. More commonly associated with tremors and rigidity, dystonia and more, people with Parkinson’s have a six times greater risk of developing dementia than others.
If a patient with PD develops dementia at least a year after the onset of motor symptoms that are related to PD, this is known as Parkinson’s dementia. If symptoms of dementia appear before or at the same time as Parkinson’s symptoms, this is known at Lewy body dementia. Much like Parkinson’s disease, symptoms vary from patient to patient according to variables present.
Those who go on to develop dementia in PD, in addition to motor problems, have a greater deterioration in their attention, an inability to judge the environment around them, and struggle with their ability to be flexible. Their memory problems, however, are not as severe as those found in people with Alzheimer’s disease.
Though those with dementia and having Parkinson’s disease may not endure the severity of memory issues as those of an Alzheimer’s patient, they do have to deal with changes in their attention span, cognition (the activities of thinking, understanding, learning, and remembering) and their ability/inability to carry out tasks. They also frequently deal with having hallucinations and sleep disturbances.
Having symptoms of mild cognitive impairment (MCI) in/with Parkinson’s disease is not uncommon and it is estimated that one-quarter to one-third of people (some research shows a whopping 50-60% but for now we’ll ignore those numbers as 40% tends to be high enough) with the disease have (or will have) MCI. Research also shows that 80% of patients who have had PD 20 years +, will have have developed dementia. Take into consideration that most people are diagnosed after the age of 65… Let’s not even go there for YOPD…
Most all patients with Parkinson’s disease have been concerned at one time or another as to whether or not they will develop dementia. Research has shown that MCI can help to identify early signs of demetia in people with PD, quickening the onset of treatment.
There is evidence that treatment with rivastigmine can greatly improve the symptoms of dementia for a period of time, controling the symptoms of dementia and having a positive effect on them. There are other meds available to control symptoms
In part one of Parkinson’s Disease and Dementia, we talked about those little monsters called ‘Lewy bodies’. It is believed that only a small minority of people with Parkinson’s do not have Lewy bodies. In early stages, they are mainly found in the middle part of the brain – also known as ‘middle brain’ in the Hobbit world. Later, the Lewy bodies spread to other areas of the brain, thus earning the name ‘little monsters’.
Come back tomorrow for part three of Parkinson’s Disease and Dementia where we’ll talk about the havoc those little monsters wreak called ‘hallucinations‘. Shoud be boatloads of fun…
I had a reader ask the question: “Why is there never any commnets on Parkinson’s dementia? It is very real and 40% of Parkinson’s patients deal with it.”
So I began to look into it. And a simply answer to the question posed would be, “because I don’t want to think aobut that stuff.” It’s frightening, to say the least. To propose that this disease could dominate and take over my mind (different than that being my ‘brain’), amongst the other things it’s already taken, frightens me.
But it is a real possibility, no matter how frightening.
An estimated 50 to 80 percent of those with Parkinson’s eventually experience dementia as their disease progresses. The average time from onset of Parkinson’s to developing dementia is about 10 years.
It is believed that the two most common causes for dementia in older people are Alzheimer’s disease (a progressive mental deterioration that can occur in middle or old age, due to generalized degeneration of the brain. It is the most common cause of premature senility.) and another condiiton called vasular dementia, which is a condition that involves changes to the brain’s blood supply. However, Parkinson’s disease, an HIV infection, head injuries and Lewy body disease have also been known to caused an arise of dementia.
What complicates matters further is that in those having PD dementia, plaques and tangles are also present. Plaques: not the kind dentist removes from your teeth. Tanlges: not the kind you comb out of your hair. No, we’re talking serious stuff here. Plaques are deposits of a protein with a funny name that form around blood cells that have died. As they form through death, these little monsters begin to cling to one another and form clumps – plaques. The little monsters build up between good nerve cells, preventing them to send messages to each other properly.
Tangles are formed of of nerve cells known as tau protein that are either on their way or have made it to death row. They bunch togehter, twisting (or tangling) around each other, forming tangles of nerve cell fibres. While tangling up the paralles stands of tau protein nerve cells, they fall apart, disintegrate and destroy the cells’ irreplaceable communication system.
While all this is going on unawares to the patient, the plaques and the tangles quietly continue to gather inside of the brain, causing other nice and healthy nerve cells to eventually wither away and die a silent death and the area of the brain in which these little monsters had their fun fest shrinks.
If a person with Parkinson’s disease also has these so-called plaques and tangles, this complicates things, as these are the hallmark brain changes that have been found linked to Alzheimer’s disease.
I told you we didn’t want to think about this stuff. But, it’s real. It’s a part of Parkinson’s disease that we need to be aware of, not so that we can try not to think about it, but so that we are able to receive treatment sooner than later, hopefully to postpone some of dementia’s ugly symptoms.
What does it mean to be made aware? Really aware of something?
Okay, so you know about something. Someone made you aware either by telling you, you read about it, or you saw something about it. Perhaps someone shared their knowlege with you. Or they wrote about it or made a movie or documentary about it. Somehow, some way, some where, you found out about Parkinson’s disease. Or Alzheimers. Or the Little Mermaid. Or haircuts, first kisses, Barbies, or flip-flops.
You became watchful about whatever became interesting or important to you. Where once you never noticed, it now seemed like information or interest was booming. Like getting a new car. While you’re looking for a specific model, it seems you now notice that once elusive care everywhere. And yet, it’s always been there. You just never really noticed. Your conscious has a new target. You are awakened to something that had once been unnoticed. You’re on the watch.
Sometimes, though, we do know but we just don’t want to notice. If we don’t notice, we won’t have to do anything. We won’t have to deal with it. Things like go to the doctor. Or getting a haircut. Replacing a dripping faucet. Making a life-changing decision.
Choosing to be aware is choosing to make a difference and if you choose to make a difference, you’ll have to do something. This is true in everything. Politics, church, health, etc.
In terms of Parkinson’s disease, if you’re wanting to make a difference, start getting involved now. There are several avenues:
- clinical trials for patients and non-patients; not all are invasive and many are just observing
- support groups for patients and caregivers – don’t just be an observer – lead!
- social get-togethers
- exercise groups
- write an article for a newspaper/magazine
- join a network
- ask a local/state/national organization what you specifcally might be able to do
- become a dedicated advocate locally
- join a fund-raiser or start your own
Do you not know? Have you not heard? Has it not been declared to you from the beginning? Have you not understood from the foundations of the earth? Isaiah 40:21,22
There was a cross. Someone stepped up onto that cross so you didn’t have to because all that stuff you’ve done wrong? All those times you said something hurtful? Someone had to suffer the consequences and so someone did. But, maybe you weren’t aware of that. Maybe you didn’t want to be.
Maybe you think what’s done is past. And it is. But maybe only to you. Maybe the person you betrayed still bleeds. Maybe the lie you told still lingers. Maybe the guilt you feel has dissipated but the repercussions from the act that caused your guilt have caused resentment, retaliation, remorse.
There was a cross where now a door now stands and someone is standing just on the other side, knocking. Are you aware? Have you heard it? Do you not know who is standing there? Do you not understand?
If you are aware, you must make a choice and whatever choice you make, will make a difference.
You can choose to open that door and accept the good news that no matter what you’ve done has been paid for because of the One who will be standing, who is waiting on the other side. The One who will walk with you into, through, and out of any valley you ever have or will have to face. Maybe it’s Parkinson’s disease. Maybe it’s grieving over a lost loved one. An affair. A divorce. Unemployment. Loss of medical benefits. The list could go on. And on. And on. And it does. And sometimes we think we can handle it and soemtimes we know we can’t.
And so we try to run and the door flies open at our request and there He is. And we have a choice to make.
And it will make a difference.
We can push Him aside, spit on the cross and deny our need for Him. Or, we can embrace Him, see that He’s who He said He was (and still is), be forgiven and set free and find that which we’ve been missing.
Either way, there will be a difference.
Which will you choose? Live in chains? or be set free?
Happy Easter. He is risen. Indeed.