Parkinson’s Disease and Dementia, Part 2

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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.

Dementia is described as a significant loss in brain function, and can include memory issues, a slowing down of one’s thought processes, concentration diifficulties, apathy, and hallucinations. It also tends to be less common in the initial stages of early onset Parkinson’s (you get to have it longer but at least you may not have to deal with the dementia aspect as soon). However, as you gain birthdays, your chances of dementia gaining ground increases. So, stop having birthdays.

There are two types of dementia the Parkinson’s patient looks at (why bother with more – two’s already two too many) – Parkinson’s dementia and dementia with Lewy bodies.
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…

 

Parkinson’s Disease and Dementia, Part 1

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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.

More tomorrow…

Coming to the End of ME

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“This past year I could feel myself slipping away. Tormented by daily how’s it going to happen, when’s it going to happen  and what’s it going to look like (in terms of my having Young Onset Parkinson’s disease). It can feel all-consuming. Add the natural element of depression that you get for free when you have PD and you’ve got the beginnings of a devouring darkness that vies for your joy, your hope, your soul, your very being.Light_in_the_Darkness.JPG

Because you are in the wrong frame of mind to hear the Truth but the right frame of mind to sink deeper into an endless hole of hopelessness, you dwell on the lies you believe – those others have spoken to or about you and those you tell yourself. You believe these lies above what you know is Truth because they can be louder. You run through your checklist of disappointments that you’ve been not only to yourself, but to others as well. Disappointments of the should-haves, the could-haves, the would-haves. Regrets and failures.

You are so covered by darkness at this point you can’t hear the Truth. You can’t see the Truth. You’re not sure if you even know the Truth.”

I started  a post yesterday with the words above but it went in a direction different than what I had  thought. Now I am drawn back writing out the post I was thinking about to begin with   – that of not being sure if I could hear or see or even know the truth in the midst of the darkness I seemed to be enslaved in.

My main struggle seemed to be with my disease. I had a rough beginning to my year when I not only realized but had to accept the fact that the neurologist I had, who  had also become a friend, would not be able to continue as my doctor. Ten years under his care. 60 to 90 minute appointments averaging every three to four months over those ten years, two surgeries, and visits that felt more like two friends having tea and cookies  than being  injected  with Botox for stiffness  and pain 10-15 times  per  visit.

I didn’t want to start over. He knew me. He diagnosed me correctly. Told me I didn’t have Lupus (yea!) but had Young Onset Parkinson’s disease (oh boy!). Told me he’d be with me ’til the very end…

But our end looked different than I expected. I pictured me ushered into my last visit with him in the confines of a wheel chair, drooling all over myself, slumped over, nodding yes because I can no longer control the tremors with medications or a zap from the wiring in my brain.. Because of my deteriorating state,, people go about thinking I am  so friendly and always waving at them (tremors of the arms and hands) and so agreeable because I’m always nodding yes (tremors of the head, neck, face).

That’s not how it was a year ago. A year ago I began to think this was becoming a burden. The medical bills, the distance,  the drive.

Then I attended a conference where my doctor was speaking and found out he had been  deathly ill and was fighting a  diagnosis  of his own . The next month I went to my regular scheduled appointment and he looked worse than the month before. After my appointment he was admitted back into the hospital for the fifth time in six months and followed up with a three to six month sabbatical to get well. While he was trying to recover, I was sinking further into darkness.

Why was it so hard to let go?

I asked myself that question constantly. Was it because he had become more than the kind of doctor this world seems to be overflowing with – ones that have lost sight of the patient and have turned to production and pushing papers? Was it because he had become a friend? Was it because he really did know me so well? Was it because when he said he’d be there through my first brain surgery he really was (even though he didn’t need to be)? Was it because when they’d wake me to test the placement of the wire, he was right there by my side, holding onto my hand? Was it because I wanted him to be part of the how’s it going to happen, when’s it going to happen and what’s it going to look like – you know – till the end, like he said? Like I pictured?

I was going to be that little old, agreeable, friendly lady in the wheel chair, not the patient who worried about her doctor who was fighting a battle all his own. While my prayers increased on his behalf, so did my anxiety. I knew things weren’t getting better with me physically and knew my medications or my DBS (Deep Brain Stimulation) unit needed adjusting – at least. I had to let go.

I made the call I had put off for too long in hopes of getting my way and made an appointment with a highly recommended neurologist/Movement Disorder Specialist  in Eugene – only three and a half hours north. A much shorter distance than driving from Southern Oregon to Phoenix or flying to Minneapolis and back.

My first visit was hard. Nothing unfamiliar as far as testing and questions. But it was a reminder of what I had lost.

My doctor.

It was nearing the end of the appointment when my new doctor began to check the settings on my DBS unit. Something wasn’t registering correctly and eventually I was sent for an x-ray where it was discovered the first DBS wire had somehow been broken. 

While that fix-it surgery was harder on me than the first two surgeries, it affirmed in me the fact that God is in control and knows what’s best and… I am stubborn.

I seem to hold on for far too long that which God is trying to pry loose from the clutches of my fingers. I sometimes felt like a kicking, screaming child wanting it my way. Who was going to be there until the end?

I will.

Who was going to be part of the how’s it going to happen, where’s it going to happen, what’s it going to look like  and who was going to know what to do  about it?

I heard it again…

I will.

I sat in the  doctor’s   office   and a peace came over me  and a light began to fill the darkness as  I waited for confirmation that the DBS unit was  now in right, working order.   The doctor made adjustments that day, the following week, the week after that and in two days she’ll adjust again. And I will be there. Not because those weekly trips are actually doable, but because I have learned this year – again – that God is in control and has His best in mind  for me, even though I can be stubborn. When I let go, He is free to work.

I haven’t felt this good in probably two or three  years. The other day I was speaking to a couple and the conversation led to my having PD. The gentleman said his father had PD. “He didn’t get it until the age of 62,” he said, “but he lived ’til 92 and it was only the last two to three years that were really bad from the PD.”

That’s not everyone’s experience, but that not a ‘bad’ experience (‘bad’ being relative).

I don’t know what my end will be like, when it’s going to happen, or if I’ll be harassing my caregivers from the throne of my bed or the confines of my nursing home wheelchair but I do know who’s going to be there with me – through it all.

He will.

Apathy in Parkinson’s Disease

Day 26 – Parkinson’s Disease Awareness Month continues…

I posted an infographic the other day about Parkinson’s disease. It didn’t have the non-motor symptoms listed on it and it was brought to my attention. For a list of non-motor symptoms, check this out. For today, I am going to focus on one non-motor symptom: apathy

Just what does apathy mean? Some say that the opposite of hate isn’t love, but apathy – an attitude of not caring. Miriam Webster defines it as showing little or no feeling or emotion. Spiritless. There’s little or no intereste or concern. You feel 

  • indifferent
  • complacent
  • disinterested
  • unconcerned
You are
  • lukewarm
  • aloof 
  • cold 
  • numb
  • unemootional
  • detached
  • unfeeling
  • insensitive
  • unattentive

Ever feel that way? I highlighted the word spiritless above, because I think that sums up the whole mess. 

Apathy can be pretty pathetic and discouraging when you come across it in someone. Most people who are apathetic cause you to feel frustrated by their seemingly sense of detachment and unfeeling attitude toward life. However, in a person wwith Parkinson’s disease, often beknownest to them what is truly happening, they don’t want to feel this way. They don’t want to feel numb, lifeless, spiritless

Some tend to believe that apathy and depression are one of the same. According to the Journal of Neuropsychiatry, “Apathy is defined as diminished motivation not attributable to decreased level of consciousness, cognitive impairment, or emotional distress. Depression involves considerable emotional distress, evidenced by tearfulness, sadness, anxiety, agitation, insomnia, anorexia, feelings of worthlessness and hopelessness, and recurrent thoughts of death.” In a study conducted several years ago, doctors concluded that in Parkinson’s disease, apathy is present, but depression is more consistent with the disease. So do we ignore the sometimes and shoot for the consistent? No. It all needs to be addressed. So where do you start?

I have struggled with both aspects of these two specific non-motor symptoms. Apathy has robbed me of time. Opportunities. So has depression. Whereas apathy has left me feeling unemotional and numb, depression has left me in darkness, despair and desperation. When they have coincided with one another, it has felt like a ticking time bomb in my head and spirit. It is a scarey place to be and it is real.

For me, part of thee apathetic feeling I had came from feeling like I didn’t know what to do next. Feeling stuck in those ‘off’ moments. Keeping a list of things I want to accomplish or need to accomplish, no matter how simple or mundane it may seem, helps to bring things back into focus. Here are some practical suggestions for those moments when you feel bound in the land of apathy (and they help for depression mode, too):

  • Get up, take a shower, get dressed. Don’t think about it. Don’t allow yourself to get distracted. Do it. Laying out your clothes the night before may sound childish, but who cares? It makes your life easier.
  • Get some exercise. Stretch. Walk. Go for a swim. If you can’t motivate yourself, ask someone to help you/keep you accountable. To pull you out of the house if they must, and drag you along until you’re going along because you now see just how good you feel.
  • Take your medications on time. This involves sorting them ahead of time and having them ready to pop in your mouth when you are taking a handful each time. When you’re feeling apathetic or depressed, it is easy to just forget it becasuse unscrewing five child-proof prescription bottle caps four times a day isn’t something you’re going to feel like doing and you’ll pay for it within the hour. 
  • When you have things you really shouldn’t put off, do the things you hate first. That will make accomplishing your goals easier.
  • Talk to a friend. Have someone pray with you and/or for you. Having another person to share life’s struggles makes the struggle bearable.
  • Talk to your doctor. There are treatments for apathy and depression for people with Parkinson’s disease who find themselves fighting to stay sane. This disease already takes enough from us. Don’t let it have your joy and happiness, too.

 

 

Day 22: Parkinson’s Disease and Dementia, Part 2

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.

Dementia is described as a significant loss in brain function, and can include memory issues, a slowing down of one’s thought processes, concentration diifficulties, apathy, and hallucinations. It also tends to be less common in the initial stages of early onset Parkinson’s (you get to have it longer but at least you may not have to deal with the dementia aspect as soon).  However, as you gain birthdays, your chances of dementia gaining ground increases. So, stop having birthdays. 
 
There are two types of dementia the Parkinson’s patient looks at (why bother with more – two’s already two too many) – Parkinson’s dementia and  dementia with Lewy bodies.  

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…

 

 

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