Tag Archive | Parkinson’s Disease

Profiles in Dementia: Muhammad Ali (1942 – 2016)

Muhammad Ali (1942-2016)Muhammad Ali is remembered as one of the greatest boxers of all time. His physical strength and abilities, his agile footwork in the ring, and his witty and intelligent – and sometimes boastful – running commentaries about himself and his opponents made Ali compelling and appealing to a much wider segment of the population than just those who liked to watch boxing.

But as Ishmael Reed so poignantly points out in his New York Times article about Ali, none of this came without a cost. A very high cost. An eventually fatal cost. Continue reading

“You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease” – Chapter 10 Excerpt

You Oughta Know: Recognizing, Acknowledging, and Responding to the Steps in the Journey Through Dementias and Alzheimer's DiseaseIn this eleventh installment of chapter excerpts from the book You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease, we look at the tenth step in the journey through dementias and Alzheimer’s Disease.

This post includes an excerpt from chapter 10, which gives comprehensive information on how to acknowledge, recognize, and respond to the tenth step in the journey through dementias and Alzheimer’s Disease: more frequently going back in time (long-term memories) and losing connection with the present (short-term memories and recognition of loved ones).

This chapter discusses why this step occurs and offers practical, real-time, and loving ways we as caregivers should respond and help our loved ones as we negotiate this step in the journey.

This series begins with the forward to the book and an explanation of why I wrote this book and why you should read it.

The series continues with the inclusion of excerpts from Chapter 1, Chapter 2, Chapter 3, Chapter 4, Chapter 5, Chapter 6, Chapter 7, Chapter 8, Chapter 9, and, with this post, Chapter 10.

The steps in the journey through dementias and Alzheimer’s Disease are presented sequentially in the order in which they actually appear in the course of these neurological diseases.

There are no other books that literally walk through each step in sequential order as they emerge in the journey through dementias and Alzheimer’s Disease.

Additionally, there is no other book that discusses:

  1. The process we as caregivers acknowledge each new step – there is an acceptance period that we have to go through
  2. The process we use to guide ourselves and our loved ones with dementias and Alzheimer’s Disease through the recognition phase of each step
  3. The concrete, loving, and practical information on how we should respond and how we can help guide our loved ones’ responses

These are the things that make You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease unique and stand alone in the plethora of books about dementias and Alzheimer’s Disease.

going gentle into that good night divider

Excerpt “Chapter 10: ‘Time Reverse and Rewind”

“The next step in the journey with our loved ones with dementias and Alzheimer’s Disease can be difficult to comprehend and adjust to, since it usually appears randomly and unexpectedly. This step is where our loved ones seem to frequently go back in time in memories, in conversations, and in thinking and they often don’t recognize us or know who we are.

I first read Katherine Anne Porter’s The Jilting of Granny Weatherall in high school. It is the story of an 80-year-old woman who has dementia and/or Alzheimer’s Disease. Neither of these names for neurological impairment existed, however, when Porter wrote this short story in 1930. Instead, elderly people were just ‘senile.’

The story made a strong impression on me even as a teenager, even though I never had steady and intimate contact with elderly people (both my parents lost their parents when they were very young and, as only children who were much younger than their cousins, had no aunts and uncles except one on my mom’s side left by the times we kids came along) and had never seen anything that looked like dementias and Alzheimer’s Disease.

I found Granny Weatherall fascinating and I found the juxtaposition of where she was in her own mind versus what was actually going on around her intriguing.

If you have not read the story, you should.”

“You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease” – Chapter 9 Excerpt

You Oughta Know: Recognizing, Acknowledging, and Responding to the Steps in the Journey Through Dementias and Alzheimer's DiseaseIn this tenth installment of chapter excerpts from the book You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease, we look at the ninth step in the journey through dementias and Alzheimer’s Disease.

This post includes an excerpt from chapter 9, which gives extensive information on how to acknowledge, recognize, and respond to the ninth step in the journey through dementias and Alzheimer’s Disease: balance, stability, and falls.

This chapter discusses all of the reasons that the neurological damage of these diseases affect balance, stability, and lead to an marked increase in fall risks and actual falls.

This is the ninth step in the journey through dementias and Alzheimer’s disease.

This chapter also discusses practical, real-time, and loving ways we as caregivers should respond and help our loved ones as we negotiate this step in the journey.

This series begins with the forward to the book and an explanation of why I wrote this book and why you should read it.

The series continues with the inclusion of excerpts from Chapter 1, Chapter 2, Chapter 3, Chapter 4, Chapter 5, Chapter 6, Chapter 7, Chapter 8, and, with this post, Chapter 9.

The steps in the journey through dementias and Alzheimer’s Disease are presented sequentially in the order in which they actually appear in the course of these neurological diseases.

There are no other books that literally walk through each step in sequential order as they emerge in the journey through dementias and Alzheimer’s Disease.

Additionally, there is no other book that discusses:

  1. The process we as caregivers acknowledge each new step – there is an acceptance period that we have to go through
  2. The process we use to guide ourselves and our loved ones with dementias and Alzheimer’s Disease through the recognition phase of each step
  3. The concrete, loving, and practical information on how we should respond and how we can help guide our loved ones’ responses

These are the things that make You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease unique and stand alone in the plethora of books about dementias and Alzheimer’s Disease.

going gentle into that good night divider

Excerpt “Chapter 9: ‘I Keep on Fallin’”

“While many of our loved ones with dementias and Alzheimer’s Disease are in good shape physically when these diseases begin to manifest themselves, they eventually reach this step of the journey where there is a great risk of falling. Attached to this risk is the possibility of broken bones – especially hips, which may be so badly damaged that our loved ones become confined to wheelchairs or bed for the rest of their lives – and head injuries, which can be fatal.

The reasons that our loved ones are increasingly susceptible to falls are:

  1. Gait changes

    Gait changes are common as dementias and Alzheimer’s Disease progress in our loved ones. One of the most characteristic gait changes is shuffling. This is especially pronounced in our loved ones who have Lewy Body dementia and Parkinson’s Disease, but it becomes a feature of all dementias and Alzheimer’s Disease by this step of the journey.

    Shuffling is when our loved ones don’t pick their feet up off the floor to take steps, but instead slide them across the floor to move forward. One of the inherent dangers in this is catching the front part of shoes on the floor – especially carpet – and falling forward.

    Shuffling can be both a result of neurological impairment – not remembering how to take normal steps to walk – and muscle weakness from lack of use.

    The most important thing we can do for our loved ones with dementias and Alzheimer’s Disease to help minimize shuffling is to have a physical therapist on our care teams to help regain muscle strength and work on gait normalization. Additionally, if possible, we should be helping our loved ones maintain muscle strength and walk with them daily encouraging them, both by example and by instruction, to use a normal stepping gait to walk.”

The Rare Dementias: Corticobasal Degeneration (CBD)

Corticobasal degeneration (CBD) – also known as corticobasal ganglionic degeneration (CBGD) – is a rare (occurs in less than 1% of the population) and progressive form of dementia.

The onset of symptoms typically occurs after the age of 60 and the average duration of the disease from onset of symptoms to death is six years.

Although the underlying cause of CBD is unknown, what is known is that CBD is the result of extensive and severe damage in multiple areas of the brain.

Research into this form of dementia is relatively new (it was discovered in 1968), but the most current research has found that there are similar, but not identical, changes in the brain protein tau to the changes observed in progressive supranuclear palsy and Pick’s Disease.

lobes of brainThese areas of the brain where damage is extensive include the cortex (especially in the frontal lobe and parietal lobes) and the deep-brain basal ganglia region of the brain, with the hallmark feature in that area being significant neuron degeneration and the loss of pigment in dopaminergic neurons (signifying a decrease in dopamine production) in the substantia nigra, which controls movement. 

Dopamine is a chemical produced by the brain (a neurotransmitter) that plays a leading role in movement, memory, pleasure,  cognition, behavior, attention, sleep, and mood.

basal ganglia substantia nigra dopamine movement corticobasal degeneration CBD dementiaWhen dopamine production decreases in the substantia nigra, movement is severely affected.

Often this is the first visible symptom of CBD. It presents as stiff movement, shaky movement, jerky movement, slow movement, and increased lack of balance, increased lack of coordination, and clumsiness. Generally, movement problems affect one side of the body almost exclusively, but as CBD progresses, both sides of the body are affected.

Since these movement disorders can mimic both Parkinson’s Disease and the effects of a deep-brain stroke –  one of the classic movement disorders associated with these is ideomotor apraxia (a common example is the inability to initiate walking where the foot seems to be stuck to the floor and can’t be lifted spontaneously to take a step forward) –  those must be ruled out as the causes of the movement disorders.

Other early symptoms of CBD can include difficulty controlling the mouth muscles, cognition problems, and behavioral problems. Language and speech difficulties – dysphasia (an impaired ability to understand or use the spoken word) and dysarithia (an impaired ability to clearly articulate the spoken word) – are also early CBD symptoms.

(In my latest book, You Oughta Know: Recognizing, Acknowledging, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease, I devote a whole chapter to a comprehensive and in-depth discussion of the communication problems, including the different types of dysphasia, that occur with dementias and Alzheimer’s Disease, and ways to work with our loved ones to keep the lines of communication open for as long as possible.)

It is not unusual for CBD to be initially diagnosed, if the first symptoms are cognitive impairment and/or behavioral issues, as Alzheimer’s Disease or frontotemporal dementia. Similarly, if movement disorders are the first symptoms, CBD is often initially diagnosed as Parkinson’s Disease.

However, a clear diagnosis of CBD is usually made when both movement disorders and cognitive impairment and/or behavior problems appear simultaneously.

There is no known treatment for CBD. Unlike Parkinson’s Disease where dopamine-enhancing or dopamine-mimicking medications prove to be effective for some of the duration of the disease, these drugs have proven to be ineffective for treating CBD (this is likely because of the very different pathologies in the development and progression of the two diseases).

In the early stages of CBD, speech therapy and physical therapy may help with communication and stiffness and movement. However, as the disease progresses, these will become less effective and, in the end stage, they will be completely ineffective.

As CBD progresses, other symptoms appear and worsen, including:

  • Rigidity
  • Tremors
  • Involuntary muscle contractions
  • Involuntary eyelid spasms
  • Loss of sensory functions
  • “Alien hand/limb” syndrome (hand or limb movement that the person isn’t aware of nor has control over)

Because of the increased rigidity and lack of muscle coordination and use as CBD progresses, usually within five years of onset, sufferers will be unable to swallow and will be completely immobile. Even before this, though, one of the potentially-fatal risks associated with CDB is aspiration of food into the lungs because of impaired swallowing and the high likelihood of pneumonia as a result.

While a feeding tube may be considered as an alternative when CBD has progressed to the point where swallowing is significantly affected, it is, in my opinion, inhumane because it only prolongs the suffering from a disease that is ultimately fatal.

This is a quality-of-life choice. I can’t imagine for myself a life prolonged where I am completely immobile and completely dependent on everyone else for everything and I can do nothing for myself.

A feeding tube would be my worst nightmare. And for me, it would be the most cruel thing those in charge of making medical decisions for me could do to me.

Fortunately, I already have all my documents in place to make sure this can’t and won’t happen to me when and if the time comes that the choice needs to be made, because I’ve already made the choices. 

So, as an aside, I would strongly urge everyone who reads this to get your wishes formalized and signed and communicated so that you have control over the end game of your life in this area.

Not only is the wise and prudent thing to do, but it eliminates the agony of wondering what to do so often seen in families where the person affected never talked about what he or she wanted and never took the time to answer these questions when he or she could.

 

 

 

Sundowning and the Sleep Conundrum of Dementias and Alzheimer’s Disease

Today’s post will discuss how dementias and Alzheimer’s Disease affect circadian rhythms and sleep, as well as some tips to help manage sleep disruptions effectively.

There are a lot of factors that make up our sleep behavior. I first want to discuss the biology of sleep and how, even if there are no other sleep disorders, dementias and Alzheimer’s Disease disrupt the biological sleep cycle.

Normal Circadian RhythmHumans have an internal 24-hour clock that is synchronized with daytime and nighttime (light has a profound impact on this clock). This clock is referred to as our circadian rhythm.

As people age, this clock changes so that they normally tend to go to sleep earlier and wake up earlier. Sleep disorders like insomnia and sleep apnea are more common in older people as well. But their circadian rhythms are still primarily based on light (the more light, the more wakefulness; the less light, the more sleepiness) and time of day.

However, in our loved ones suffering from dementias and Alzheimer’s Disease, circadian rhythms go out the window because the diseases impair the brain’s ability to tell time and to distinguish between light and dark as indicators of when to sleep and when to awaken. It is sometimes helpful, in the early stages, to get a 24-hour clock to help our loved ones distinguish between A.M. hours and P.M. hours, but eventually that will be a casualty of the diseases.

The most common circadian rhythm disorder associated with dementias and Alzheimer’s Disease is a phenomenon known as “sundowning.” It occurs in the late afternoon and early evening.

It is characterized by speech and behavior repetition, constant pacing , excessive restlessness, wandering, disorientation to time and place, and agitation or aggression towards others.

Wandering is especially dangerous because if our loved ones get outside, they can walk long distances with limited vision because of the sun going down, sometimes on crowded roadways, and are susceptible to being the victims of crime and vehicular death.

One probable cause of sundowning is that there is damage to the part ofSleep/Wake Patterns Circadian Rhythm the brain that produces melatonin (the sleep hormone) and the reduced production causes an irregular sleep-wake rhythm

Another theory on the cause of sundowning is related to the energy levels of our loved ones with dementias and Alzheimer’s Disease . At the end of the day they are likely tired from the day’s activities.

This can aggravate the symptoms of the diseases, making them more anxious and stressed. Before the onset of these diseases, this time of day would have typically been the busiest for them. They would be getting home from work, getting ready for dinner, doing household chores, and going to bed. Now that they’re unable to do those things, they have little to do at a time that was the busiest of the day for them.

The most common sleep disorder that occurs with dementias and Alzheimer’s Disease is an irregular sleep-wake rhythm. You can see in the graph above how disruptive this rhythm is and why our loved ones with dementias and Alzheimer’s can be so tired, in general, all the time.

However, I believe the most damaging effect of this sleep pattern is that it actually prevents the restorative/repair functions that occur during a normal sleep rhythm, which exacerbates the neurological damage that dementias and Alzheimer’s Disease do to the brain. In short, this sleep pattern makes the diseases worse.

The most effective – and safe – way to try to minimize an irregular sleep-wake rhythm is to add melatonin to nighttime medications. As I’ve said before, up to 12 mg of melatonin is considered safe, but start with a low dose (3 mg or 5 mg) and give it time to see if that gives our loved ones more continuous and restful sleep. The goal is to keep them asleep at night and keep them awake during the day. Too much melatonin can have them sleeping all the time.

I would also suggest keeping our loved ones active and busy – as they are able – during the day (I will talk more about this in another post, but will briefly touch on it here). Up until the last week and a half of my mom’s life, when she’d had the major heart attack and just couldn’t do much with me, I had her help me with the household chores that she could like making the bed, folding laundry, preparing meals, and helping me with the dishes.

I didn’t care whether it was perfect or not (initially a big challenge to my normal OCD about those kinds of things), but I found that the more she did, the better she felt and the better she slept.

There is a sleep disorder that is specific to Lewy Body dementia and is one of the primary symptoms of that form of dementia. It is called R.E.M. sleep behavior disorder.

R.E.M. sleep behavior disorder is impossible to miss. Anytime a sufferer is asleep, they are in motion acting out their dreams and, at least in my mom’s case, having sometimes understandable and sometimes not in-depth conversations. It is also characterized by “picking” at clothing or bedclothes while asleep.

On the one hand, at least for me, it was quite fascinating to watch Mom dream and act out her dreams. Apparently – and I’ve seen this with other Lewy Body dementia sufferers, so it must be common for all of us to dream about – she dreamed quite often about food, because she’d often make the motion of either eating with a utensil or with her hands to her mouth. That was usually when she was napping during the day. 

Most of her conversations occurred at night, although occasionally she’d say a line or two during a daytime nap. And they’d last all night sometimes.

Her nightime dreams also included a lot of moving around and possibly a version of restless legs syndrome (not uncommon for R.E.M. sleep behavior disorder).

While I know this had a detrimental effect on her quality of sleep, it was disruptive for me too. I have always been a light sleeper and have had my own issues all my life with not sleeping much (and sometimes not sleeping at all for a day or two) and not getting quality sleep (waking up a lot or being wide awake in the early morning hours and not being able to go back to sleep for an hour or two). With Mom talking and moving around all night, it made sleep that much more difficult for me.

An increase in melatonin helped with this as well. I bumped her up to 7 mg each night (she was at 5 mg before) and it was just enough to keep most of the symptoms at bay. There were still some nights when it was noticeable, but the worst of the symptoms seemed to be alleviated. And because she slept better, she felt better and did better during the daytime.

I hope this brief overview helps. If you have any questions or any topics you would like to see discussed here, leave me a comment or email me at goinggentleintothatgoodnight.com. If I don’t know the answer, I’ll do my best to try to find it.

You’re not alone and my intent and goal is to keep reminding you of that and help you as much as I am able.

The Layperson’s Guide to Lewy Body Dementia

Today’s post will discuss Lewy Body dementia: what it is, some of the hallmark features of it, and medications that can help, unless there are severe side effects, and some alternatives to deal with those cases in which the most-often prescribed medications may not work.

Lewy Body dementia is diagnosed during life by its symptoms. The only way to Lewy Body Proteinconfirm it medically is by doing an autopsy on the brain after death. However, the symptoms are obvious enough that it can easily be diagnosed while our loved ones are alive.

This history of  discovering the source of Lewy Body dementia began with Frederick Lewy in 1912. While doing autopsies on the brains of people who’d been diagnosed with Parkinson’s Disease (Lewy Body dementia and Parkinson’s Disease share many motor systems characteristics), Lewy discovered tiny – and abnormal – protein deposits in deteriorating nerve cells of the mid-brain. These proteins became known as Lewy Bodies. Their presence in the mid-brain always leads to a diagnosis of Parkinson’s Disease.

It wasn’t until fifty-plus years later that scientific researchers discovered these same abnormal protein deposits in the cortex (the “gray matter”) region of the brain in patients who had suffered from dementia.

Someone with Lewy Body dementia will have these abnormal protein deposits in both the mid-brain and the cortex. 

The symptoms that differentiate Lewy Body dementia from Parkinson’s Disease are:

  • Vivid and recurring hallucinations and delusions early on when the inkling that something’s going wrong starts.
  • REM sleep behavior disorder
  • Mild to moderate motor skills impairment, most notably with balance, muscle stiffness, and the tendency to fall frequently. A shuffling gait when walking is usually noticeable as the disease progresses.
  • Strong and dramatic fluctuations in cognitive function and alertness.

With my mom, although Lewy Body dementia wasn’t officially diagnosed (I did the research on what I was seeing and realized that’s what it was) until near the end of her life, all three of these symptoms were present early on when I realized something was wrong. She had progressively-worse balance problems the last six years of her life, with those becoming a front-and-center issue in 2010 when she began falling a lot.

Her hallucinations and delusions became a centerpiece issue in 2010 as well. There were also some fluctuations in her cognitive function in 2010, but the strong and dramatic fluctuations in both cognitive function and alertness did not begin until December of 2011. Even then, they were sporadic, but fairly quickly became more of a mainstay until her death in August 2012.

One the medications that she was given during her psychiatric hospitalization in 2010 was SeroquelXR.

This is one of the drugs you’ll have to make a judgment call on, since there are risks and potentially dangerous side effects to use this medication for an “off-label” use in treating the symptoms of dementias and Alzheimer’s Disease.

SeroquelXR is an anti-psychotic (neuroleptic) medication specifically developed for bipolar disorder. It carries a warning that it is not be used in elderly patients with dementia. Additionally, among our loved ones suffering from Lewy Body dementia, about 50% have adverse reactions to neuroleptic medications.

However, for Mom, it worked very well for about sixteen months in controlling the hallucinations and the delusions. In late November 2011, Mom woke up one morning and her whole body was uncontrollably, but rhythmically spasming. She wasn’t in any pain, but she was scared, so I had EMS get her to the emergency room so we could find out what was going on. What she experienced was late-stage neuroleptic-induced tardive dyskinesia.

The SeroquelXR was the culprit, so the neurologist discontinued that during her hospital stay and the spasms stopped within a few days. I was concerned about the mood aspect of not having the SeroquelXR, so the neurologist and Mom and I discussed options, since she was on anti-anxiety medication already.

The best and most workable solution was Depakote, a medication typically prescribed for epilepsy sufferers. It would work on both mood and spasms, but the neurologist said the hallucinations and delusions were going to come back.

And within a month, they did, but they were not scary to Mom and they were always a surprise to me, even though I expected them, but not unpleasant and not unmanageable.

But I came to realize that the SeroquelXR had effectively controlled a lot of the Lewy Body dementia symptoms the longer that Mom was off of it, because after the SeroquelXR was discontinued, the Lewy Body dementia symptoms gradually increased and worsened.

So SeroquexXR can be very effective in treating the symptoms as long as our loved ones can tolerate it and don’t have the kind of problems Mom experienced with tardive dyskinesia.

And that is an important point to make. A lot of this becomes a judgment call on our part as advocates and caregivers for our loved ones. If I knew back in 2010 (I wasn’t involved in the prescription part when Mom was critical and hospitalized) what I know now about SeroquelXR, I would have agreed to it. Because for sixteen months, it gave Mom a pretty decent quality of life in the dementias and Alzheimer’s Disease realm.

There is no known cause for Lewy Body protein deposits occurring in the mid-brain and cortical regions of the brain, so there’s nothing health-wise or lifestyle-wise that can be done to prevent it.

But, if we can understand what it looks like, then we can help keep our loved ones more comfortable and safe and perhaps keep ourselves a little saner and a little calmer. The more we know, the better we can love and serve them.

I’ll end this post with a progressive-over-time brain scan image of Lewy Body dementia (the source is http://www.neurology.org/). A picture sometimes is worth one thousand words, especially when I consider the fact that my mom had vascular dementia, Lewy Body dementia, and Alzheimer’s Disease and this picture shows the damage to the brain from just one of those three diseases. What an uphill battle her last few years were and she fought it bravely and well right up to the end.

Progression of Lewy Body Dementia