PD Dementia

My apologies I've been so long in posting. Life gets in the way of my fun! :)

Even after 20+ years, trying to navigate this disease is still a challenge, but we continue to learn every day. Although Jamey is only 64, he's in the final stages of PD. He is now showing significant signs of dementia. However, if he has to have dementia, Parkinson's dementia is the one to have. PD Dementia is different from other dementias like Alzheimer's, or Lewy Body.

Parkinson's Disease Dementia (PDD) is difficult to define, and like the disease, it can be extreme one day and almost undetectable the next. "The changes can be so drastic that sometimes we hear that others are concerned whether the individual is "faking" their symptoms because they can seem so much better in between these episodes." (The Parkinson's Path: Fuhgeddaboudit - Parkinson's Disease Dementia, Winter 2023, www.panctoday.org). 

Jamey exhibits confusion and inability when trying to do simple tasks he's done for ages. But other days, there seems to be nothing wrong. It's difficult for a caregiver to recognize when he is going to be "on" or "off". When this first started, I dared not leave him by himself for fear of him doing something unfixable. (Months ago, he opened a lot of subscriptions that began taking money out of our account automatically. It took me several months to clean up all the accounts and put in pin codes and blocks; actually, I'm still working on it). At that point both of us felt like prisoners. I didn't go out, even to my exercise class, for fear something would happen, But, since then, I've learned how to spot the signs that he's going to have a dementia day. He begins the day in lethargy; watches a lot of TV, sits around, even takes a nap or two. When I see this, I know he is going to be "off". These are the days I won't leave him alone. These are the days he will be confused and at times, not even know how to work the remote control on the TV. Even a simple bowel movement can be an issue, a surprise clean-up problem.

Here is an excerpt from the paper I quoted above. It was written by his doctor, and I found it very helpful. I hope you do as well. Mind you, it hasn't quelled my inquiries of "Really?! You can't do that? You did it just fine yesterday!"

"So just what is Parkinson's Disease Dementia? I have heard that it is related to Lewy Body Dementia. Is this correct?

The answer can be a bit confusing. In fact, you may still find that some clinicians use the terms LBD, PDD, and DLB interchangeably. However, the correct terms are:
Lewy Body Dementia (LBD) is an umbrella term that refers to two types of dementias that start with different symptoms but are very similar:

--Parkinson's Disease Dementia (PDD) starts with motor symptoms and dementia develops later. Most individuals with PD have cognitive impairment by 15 years of disease duration, either mild cognitive impairment (MCI -36%) or PDD (48%).

--Dementia with Lewy Bodies (DLB) starts with cognitive symptoms, Parkinsonian symptoms develop on an average 2 years after onset of dementia, are often milder and respond less well to medications. Note: Robin Williams had Lewy Body Dementia. His wife is still a strong advocate for LBD awareness.

The typical cognitive pattern of PDD is problems with attention, executive functions and visuospatial ability. These are the main issues early on; more significant memory impairment occurs later. There are also two distinct cognitive features commonly seen in PDD but not in AD (Alzheimer's Disease).

1. Cognitive Fluctuations: Often described as having good and bad days cognitively. Person may appear confused, staring off into space and be difficult to get their attention. These are profound changes in attention and alertness that can last hours and then resolve on their own. Fluctuations in cognition are common in PDD, but not in AD.

2. Visuospatial Dysfunction: not a problem with the eyes, but rather the visual part of the brain that makes sense of the information collected by the eyes. May have seen an eye doctor and been told that the eyes are working well but still having problems with reading, judging distances and reaching for objects (might drop things often). 

3. Although not 'cognitive' symptoms per se, recurrent visual hallucinations and a history of REM sleep disorder are also much more common in PDD compared to AD.
Medications should be reviewed to identify those that could worsen symptoms or are best avoided in older adults with dementia.

This article goes on to give other ideas on coping with PDD. Worth reading if you suspect your loved-one has PDD, LBD, or AD.

It's not fun dealing with all of this. However, of all the dementias to have, this one is far easier to deal with, I think. At least I get a day or two of respite in between episodes; enough to give me back my sea legs and gear me up for the next round of dementia to come!

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The Parkinson's Path: Fuhgeddaboudit - Parkinson's Disease Dementia, Winter 2023, www.panctoday.org. 

Bugging Out with your Loved One

Do you sometimes wonder how you would evacuate or flee with your special-needs loved one in an emergency? For instance, how will you move your loved one in a wheelchair or scooter, toting an oxygen tank, hospital bed, commode, or other medical devices, quickly?  That can be a daunting question, and even more daunting to actually do it.

With climate change and concerns of the unexpected, comes a fear of preparedness. Every state has natural disaster threats where evacuation may be eminent.  Flooding, fire, hurricane, earthquakes and tornados are far more prevalent these days. So, what will you do if you have to get your loved one out quickly?

One of your first steps should be to evaluate the absolute necessities you will need to travel with you. Medications, chargers for power chairs, oxygen and the like, should be at the top of the list. Adult diapers, pullups, bedding, pillows, hospital bed, commode are also important depending on where you end up.

To make bugging out (evacuation) easier, clear a space in your closet and keep everything there that needs to go with you in a hurry, For instance, keep all of your overflow medications, chargers, oxygen, etc., in that area. For items you use regularly and cannot store, always put them back in the same place so you won't be scrambling to find them at the last minute. You may even want to keep a packed suitcase in the same closet if that will make you feel better. If you've made a Care Binder (October 20, 2014, "Respite Workers", this Blog), put a page in the Bugging Out section that tells exactly where everything you need to bring will be located. Mark it in red if necessary so a caregiver other than you will be able to locate the information quickly.

Here is a list to help you start preparing. Each individual's needs are different, so tweak the list to accommodate you and your loved one.

1. Identify what natural disasters occur most often in your area. Determine whether you will know ahead of time about an evacuation and plan accordingly.

2. Choose a friend or relative you can stay with if something should happen and talk to them ahead of time. If that's not possible, ask your township where the emergency locations are to house evacuees.

3. Know the set up for the home or hostel where you will be going; does it have stairs, is there a hospital bed available, what is the shower/toilet situation? Is there room for a power or wheelchair to move around easily? What are the accommodations for disabilities?

4. What are the transportation options to get you out safely and timely?

5. Do you know the emergency procedure for where you live, where to go, what route to take? If you live in a senior community, are you familiar with their emergency plan?

6. Do you know where the shut-off valves are to your home or apartment. Do you know what tools are needed and do you have them on hand?

7. Make a list of everything you and your loved one needs on a daily basis. Go through the list and separate items by importance. Keep the list on a wall or in your binder (October 20, 2014 "Respite Workers"; this Blog), 

8. If necessary, add a wagon or small trailer to your scooter or wheelchair. You'll need to assess weights and feasibility, but it may be a viable option.

Here are some supplies you might need in an evacuation:

Regular medications (and backups)
Oxygen tanks and charger
Power chair or scooter, and charger
Cell phone and charger
Hand crank radio or small radio and batteries
Bed pillows, neck pillow
3 to 6 day food supply (requires no cooking)
3 to 6 days water supply
Flashlight with batteries
First aid kit (fully supplied)
Manual can opener
Waterproof matches
Cash
Emergency medical form naming contacts
Personal hygiene items

Extra batteries for everything
Glasses (and backup pair)
Extra clothes, jackets, underwear, socks
Adult diapers, pullups  
Blankets
Plastic bags
Wet wipes 

I hope this is helpful. I know many of us don't like to think about natural disaster or war coming to us, but it's a different world now and we need to be prepared. This is not an exhaustive list, nor are all items absolute. Take what works for you and leave the rest, but be as prepared as you can be. 

Don't get caught with your Depends down!

*You can find all kinds of evacuation strategies online. There is even a way to change your wheelchair into a bug out vehicle. But that's an entirely different blog post! Haha

STRANGE MED-FELLOWS

It's been a rough couple of months; months I never care to repeat. But I share our experience with you so you can watch for signs that might indicate a problem before it becomes one.

We've had a wonderful caregiver for several years and we trust her as a family member. So, when she came to me recently and said she had to leave because my husband was being inappropriate with her, I was completely and utterly shocked. While I had noticed a slight change in Jamey's behavior, I didn't realize the seriousness of the situation at the time (apparently, it had been going on close to a year). So, I confronted him and was equally shocked by his response. He didn't deny any of it, in fact, he didn't seem the least bit remorseful, or concerned about it. That's not my husband!

So, I dove back into full-time caregiving, still puzzled (and angry) about what had happened. While sorting through his medication, something didn't seem right about the dosages. When I looked at the amount of Mirapex he was taking for his RLS (Restless Leg Syndrome), it was somewhat higher than what he'd been taking before. Most family caregivers know Mirapex can be a source for addiction and lack of impulse control. People have gambled away family fortunes, gone on spending benders and become addicted to porn because of too much Mirapex. In our case it was porn, and acting it out.

Come to find out, because of the beginnings of PD dementia (memory deficit), Jamey had told the caregiver to increase his Mirapex so he could sleep better without his legs moving so much. Unfortunately, because he had always managed his own medications before, the caregiver didn't feel it necessary to let me know of the change, and rightly so--BEFORE dementia. 

Once notified, I contacted the doctor and he immediately cut the prescription in half. In addition to the addiction he was entertaining, he had also become fecal incontinent. In the course of 2 weeks he had fecal accidents up to 3 times a day. I was so tired and frustrated.  

Jamey's neurologist, confirmed that self unawareness and impulse control are all biproducts of this medication agonist (self unawareness explains why Jamey didn't even realize when he was having a bowel movement). Why is this still on the market? Because it works great for RLS! And for many people it doesn't cause problems. In fact, Jamey hadn't had issues with this medication for 25 years. Now, just by a slight increase, it unleashed a monster.

It's been almost 3 weeks since we cut his dosage in half and I'm seeing a glimpse of my husband again. The fecal incontinence is all but gone, and he is showing small signs of tenderness again (although, the neurologist tells us apathy is probably here to stay--part of the disease rather than medication). And, if I'm honest, the apathy has been one of the hardest things to deal with. He really just doesn't seem to care about what's he's doing or who he's hurting. Of course, knowing this is a symptom of PD still doesn't make it easy to deal with.

I don't share this to embarrass my husband, or to terrify those who are not there yet (remember, you may NEVER be).  I just want you to be aware of changes in your loved one's personality. It could be PD dementia, or a reaction to medication. Thankfully, I do all our finances, so I would have noticed a spending spree, but that is also something to watch for. 

I'm not going to tell you everything is all better and I'm over it. Even with the knowledge that it was the medication, I'm still a little uncomfortable around him now. I'm sure that will go away in time. But for now, prayer is my constant companion, and I keep caring for him as best I can.

If you have a caregiver that helps out, be sure you have her/him report any change in medication and/or personality, finances, etc. Catching it early, could prevent losing a good caregiver or a lot of money. 

I found this 30 minute video very helpful.

https://youtu.be/S2LP_5PC9LU

Decision-Making Fatigue

For caregivers, in particular, making decisions for your loved ones is a large part of the job. Whether the decisions are major or minor, it can wear us out to constantly be responsible for the household rulings. I didn't know there was such a thing as Decision Fatigue, but it is a very real phenomena that bears looking into. Following these simple suggestions can alleviate some of the distress brought on by Decision Fatigue.  I hope you find some benefit in these; I know I did.

The following article is re-printed from Kaiser Permanente Member Newsletter, December 8, 2021. 

Day after day we’re faced with many decisions both big and small — from what to wear and eat to bigger life decisions that involve family, money, and more. So, it’s not surprising that the stress of constant decision-making can wear on our mental health. If you feel overwhelmed by the thought of making another decision, then you may be experiencing decision fatigue.

Decision fatigue is the idea that our ability to make decisions can get worse after making many decisions.¹ According to Kaiser Permanente psychiatric social worker Leigh Miller, LCSW, “it’s when your mind feels mentally and emotionally overwhelmed from making many decisions at one time or in a row.” This can happen because the act of choosing takes mental energy. Studies have found that decision quality declines after an extensive period of decision-making.² So, if you have too many decisions to make, you can feel drained and stressed afterward. This may cause you to procrastinate or make poor choices.

Here are a few tips to help you overcome decision fatigue and take care of your mental health.

Create simple routines

“Decisions take energy,” explains Miller. So, cut down on the number of decisions you need to make by simplifying your routine. That could mean eating the same breakfast during the week or choosing the clothes you’ll wear the night before. You could even create a daily uniform so you won’t have to decide what to wear in the moment. “By creating routines that then turn into habits, we reduce the number of decisions we need to make — and conserve our energy for bigger tasks and decisions,” says Miller.

Make a list of priorities

Writing things down helps get thoughts off your mind and onto paper. Studies show that journaling can help reduce stress, relieve symptoms of depression, and increase resilience.³ And writing lists by hand is a good way to organize your thoughts and keep stress in check. Try writing down the top 3 tasks you want to complete or decisions you need to make. As you cross items off your list, it can help you stay positive and productive.

Ask for advice

The pressure to make decisions on our own can be overwhelming — even emotionally exhausting. When faced with difficult decisions, it may help to reach out to a trusted friend or family member. You can talk through your choices together. Connecting with others can be a helpful way to cope and make decisions, especially during uncertain or stressful times.

Find time for self-care

Our schedules are often packed with everyday responsibilities. But it’s important we also fit in moments for self-care. Try a brisk walk outside or take a midday nap to recharge for the rest of the day. “Deep breathing, stretching, and taking a moment to focus on how we’re feeling is a good way to slow down and give our brains a rest,” explains Miller. You’ll then be reenergized and ready to make decisions with a clearer mind.

Remember, small changes to your routine can make a big impact. So, take time for a mindful moment and make tweaks to your everyday habits. It can help reduce stress and decision fatigue — and support your overall mental health.

 

¹Jon Johnson, “What Is Decision Fatigue?” Medical News Today, July 6, 2020.

²David Hirshleifer et al., “Decision Fatigue and Heuristic Analyst Forecasts,” Journal of Financial Economics, July 2019.

³Joshua M. Smit et al., “Online Positive Affect Journaling in the Improvement of Mental Distress and Well-Being in General Medical Patients with Elevated Anxiety Symptoms: A Preliminary Randomized Controlled Trial,” Journal of Medical Internet Research Mental Health, June 13, 2018.

DEMENTIA OR NORMAL AGING?

Forgive the delay in posting! It has been long, hard year for us, as I'm sure it has been for everyone else. I won't bore you with all of the details, but suffice to say, we've had many hurdles to jump, and by God's grace have come over them (the really big ones, at least)!

Jamey's Parkinson's has progressed as expected. We are managing it as best we can. Although he is only 63, he is in the final stages of the disease because he was diagnosed so early (25+ years now). That is not to say he will leave this world soon--I suspect he will outlive me, and probably many of our friends! He continues to stay healthy other than the PD, which is a blessing!

As we both age, we're seeing signs of memory and cognition loss which prompted me to research whether we need to start being concerned, especially about PD dementia.

PDD (Parkinson's Disease Dementia) is most often diagnosed when a person living with PD, experiences significant cognitive decline after a year or more of motor symptoms. It typically takes place after MANY years of symptoms, which of course, is Jamey's  scenario.

PDD can also present as DLB (Dementia with Lewy Bodies) which is diagnosed when cognitive decline is noticed in the earliest symptoms, or when cognitive decline and motor symptoms begin and progress together. This can also be called Dementia with Lewy Bodies.

Signs for PDD can range from forgetting how to do simple tasks, to difficulty concentrating, learning, remembering or problem-solving. Not to be confused with short term memory loss from medication or age; it's not always easy to tell the difference.

Some of the noticeable changes are:

• Changes in memory, concentration and judgment
• Trouble interpreting visual information
• Muffled speech
• Visual hallucinations*
• Delusions, especially paranoid ideas
• Depression, irritability and anxiety
• Sleep disturbances, including excessive daytime drowsiness and rapid eye movement (REM) sleep disorder.

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*There are generally three stages building up to hallucinations with Parkinson's; illusions, delusions, and hallucinations.

Illusions are what many of us experience as we get older--nothing to be alarmed about. An illusion is something often seen out of the corner of your eye; sometimes mimicking a cat or small rodent. When you turn your head and move your eyes toward the illusion, the illusion disappears and you're able to see clearly that is isn't what you first thought. 

Delusions occur when you see something unusual out the corner or your eye, turn to look at it, and still see it. It may stay for sometime, or go away fairly quickly. The apparition deludes you into believing it is actually there. You might acknowledge or converse with it.

An hallucination is something you see and believe to be real, so much so, you actually interact with it. The hallucination takes on its own persona and may even talk back to you. When full-on conversations take place, that is a major concern.

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Parkinson's Dementia is different from other dementias in several ways. The Person with PDD tends not to forget who the people are in their lives. They don't go back to a certain time period to take care of unfinished business. And they seem to keep their wits about them for the most part (sans the hallucinations). It will primarily affect cognition and ADLs (Activities of Daily Living).

Continue to work with your loved one's neurologist and doctor. Some of the progression can be slowed down and others, managed. PDD is a horrible condition, but likely, much easier to live with than other dementias. However, ask me again in a year and I might tell you something different--we're just beginning now!😄

I want to share this beautiful poem for Caregivers. It really touched my heart because it's so true!

  

"Stutt" Your Stuff

Past research indicated that a stutter in Parkinson's Disease was caused by DBS surgery. But recently PD stutters have appeared in patients who have not undergone DBS surgery. And the stutter can get worse as the disease progresses.  

Stuttering is a speech disorder which causes disruption of speech, and is characterized by involuntary repetitions or prolonging of sounds or syllables. The origin of stuttering is not well understood. There are two different categories of stuttering. The most common form is Developmental Stuttering, which begins in childhood (and can be psychological or physiological). The other, Acquired Stuttering (neurogenetic), occurs after a definable brain damage, e.g. stroke, or other head trauma. Or it can occur in basal ganglia disorders such as Parkinson's Disease. My husband is experiencing the latter on a large scale.

It is not well documented research, but stuttering is said to occur in several cases of Parkinson's, particularly when the individual was a stutterer or stammerer in his or her youth. However, it does not have to have occurred as a child, for the PD sufferer to be susceptible as the disease progresses. My husband does not recall having a stutter as a child, but his is extreme, now.

One of the challenges with stuttering, is that people want to finish your sentence for you. Unless they are educated about PD stuttering, they don't realize that trying to finish a sentence, or find a word for the stutterer, can make the problem worse. It can throw off the patient and cause his/her brain to travel around, trying to come back to his/her intended thought, without luck. The first rule of thumb for friends and relatives of PD impaired, "Don't try and help me with the word. I will eventually find it on my own. Please be patient."

If you have freezing of gait (as a PD patient), or trouble moving your feet fluidly, you will almost certainly have a speech stutter at sometime in the future, or vise versa. The reason is, the same area of the brain that dictates smoothness of speech, also dictates smoothness of gait. A stutter is a stutter!

So, if the above paragraph is true, it stands to reason, improving your speech, will improve your gait. We found this to be true for Jamey. He has been seeing a Speech Therapist and a Physical Therapist for several months now. He has been faithful with his speaking and physical exercise. Though there is a limitation on how much the therapists can do for him in his 5th stage of the disease, the exercises seem to be helping if not a little bit. We got a surprise, though. When Jamey was just doing the speech exercises consistently, he was not only able to converse a little better, but he also got up from the power chair more often and walked around! We didn't realize what was happening until the Neurologist told us about the connection in the brain. What a nice perk! 

We know the importance of exercise for Parkinson's. Exercise, in everyone, produces dopamine and dopamine is the chemical all PD loved-ones lack. The more "Parkies" do physical exercise, the more dopamine they produce and therefore, are better able to function. Exercise is difficult for many of us; far more difficult for the PD affected.

However, when your body is fighting against an unseen culprit, only so much can be done. So, Jamey's Speech Therapist has ordered an evaluation for an electronic speaking device (yes, kind of like Stephen Hawking---I'm requesting an Australian accent 😉). It should allow Jamey to contribute to conversations with groups and family more readily. He has a great deal to offer, but because it takes so long to get out the words, he opts not to attempt it. And that's a shame for him and for others. We're looking forward to seeing what type of device the assessor has in mind for him. What an amazing world we live in, right?

So, as the disease takes away more and more of the Jamey we love, it also gives us more, too. We learn something every day; how to be more compassionate to others, how to live without things we once thought necessary, and how to be thankful to God for the moments we have, now. 

This is an interesting, challenging life, but I wouldn't trade it for someone else's, would you? I didn't think so! ;)

Positivity Prevails

If you have Parkinson's Disease, chances are, you know of Michael J. Fox. Mike was diagnosed with PD about the same time my husband was, and at about the same age (36 for Michael, 38 for Jamey).

Mike is a very positive individual and has a way of looking at the bright side even amidst his struggles with PD. He has brought Parkinson's to the forefront of research and raised millions of dollars for the same, through his website (www.michaeljfox.org) and fundraisers. He has used his charisma to reach people and expose them to information about new research and medication. He is a mover and a shaker for PD. Even his wife, Tracy Pollen, has contributed to PD with her healthy cookbook (Mostly Plants:101 delicious Flexitarian Recipes), her example of a good caregiver wife, and overall support of the cause.

Michael has just published a new book, another volume of his memoirs, that is sure to bring a smile and encouragement to whomever reads it. If you've read any of his books in the past, you'll want to read this one for sure. Here is a list of the books from the heart of Michael J. Fox. They can be purchased at any bookstore, or at Amazon online.

2002 Lucky Man

2009 Always Looking Up

2010  A Funny Thing Happened on the  Way to the Future

2020 No Time Like the Future: An Optimist Considers Mortality

There is no need to start with the first one published, but if you do, it does give you a good transitional reference as you read along. It isn't necessary, however.

I would encourage you to read at least one of his memoirs. They are uplifting and give hope. I know my husband has read them all and he comes away with a better attitude about his struggle, after each one. 

These also make wonderful gifts for the PD sufferer and/or care-partner in your life. Now, if we could just get Tracy to write one from the caregiver's point of view! 

Happy reading and be encouraged!