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!

What Stress?!

Recently we experienced a series of events and life changes NOT recommended when you have Parkinson's! Jamey's symptoms were really put to the test, and I fear they scored a low D! But we are hoping he can re-test when this is all over, and get higher marks. LOL

Read on, and heed this advice. It could some day save your life! (or at the very least, ready you for an unexpected increase in symptoms).

It started in September, when chief care-partner and wife (me), broke her back. And I can tell you from experience, the emergency room in a hospital is not the place you want to be in the middle of a Pandemic (close to 6 hours and I never got a bed or a med)!  Apparently, that wasn't enough for the mean-hoofed man-beast with the pitchfork. In the midst of this Covid crisis, we were unable to get adequate help for Jamey (in place of me), because so many caregivers were not working. So we called on friends and neighbors, many of whom feared unknowingly exposing us to a far more deadly disease. So help was sporadic at best.

To top that off, we had been told an apartment we'd been waiting for in a retirement community, had just opened up and we needed to move in the next few weeks if we wanted that floor plan (which we did). Yikes! In the midst of this pandemic, we had to sell the house, purge lots of "stuff" (we went from 1700 square feet to a little over 900), pack boxes with a broken back and a guy in wheelchair, hire a mover, and make home repairs requested by the inspector. Stress? Just a little! Remember, we're in the middle of a Pandemic, so Goodwill and other charities are 'itchy' about accepting items (long waits and lots of rules), flea markets are not running, movers have hiked up their fees and yadda, yadda, yadda.

A nice surprise in all of this; our house went on the market, had steady interest, and sold in just 5 days! That was a lovely bright spot amidst an otherwise bleak couple of months.There were quite a few issues the inspector found (they don't miss a thing do they?) so I enlisted help from friends, as handymen had also cut their hours during the outbreak. 

So, we got packed, got things repaired, found a mover who specializes in moving seniors, and were ready to go. The day of the move added to our stress. The three men who moved us were reckless with our possessions, used foul language and other than one young man, were fairly irresponsible. We ended up with many broken items, and two things actually never made it into our new home. Not sure where they ended up; probably on the highway somewhere, along with all of the single shoes and mattresses. 

We were exhausted but we were in. The next day, I went back to the old place to clean, and found Jamey's computer and several other items, still there in what used to be his Man Cave. Good thing I went back (and no, those weren't the missing items)!

We were finally in the new place! Whew! That should have been the beginning of a beautiful friendship, right? Well, even though the new apartment is accessible, that doesn't mean it's all gonna be a breeze! Maneuvering around unpacked boxes and getting accustomed to a new place, all takes its toll on a PD sufferer. We tried to get it all unpacked and off the floor as quickly as we could, but I was limited because of the back brace and general pain fatigue, and Jamey was limited being in the chair. It took much longer than it normally would have, but, with help, we did get most of it done. Of course, I was thinking once that was done, the PD symptoms would go back to pre-move status. Right? Ha! "You just keep thinking, Butch. That's what your'e good at!" 

So many things can throw PD into a spiral. In our case, it was a multitude of things. Poor Jamey wasn't sleeping more than a couple of hours each night, his shaking had increased, and his body stiffness and freezing gait was all but constant. There really wasn't anything I could do for him, but keep him calm and take as much off his mental plate as possible. Thankfully, once the stress is gone, the body does begin its slow healing process. 

Obviously, we can't put life on hold because we have Parkinson's. But it's important to be aware that things may change when one is under stress. There will be periods of time where the disease will exhibit much greater symptoms and the need for assistance and rest will be greater than usual. The Pandemic is stressful enough, but add to that any other life events, and your Parkinson's indicators could be quite a bit worse. The key is to try and keep the household calm, and take the stress off the PD suffers as much as possible. Not always easy if the care-partner is also under pressure, but it's important to do what you can to keep the symptoms at bay as much as possible. Every life event impacts us; those will PD, even more so. You may have to buy additional medical aids to help with body movements, but it's all part of the process. Be willing to find aids that alleviate mobility disorders, and work to move the body along. Be patient and persistent!   

It has been about five weeks now, and Jamey's symptoms are just beginning to get better. We're still working on recovery from the consequences of this big move, but it's getting better every day. He will likely never function as well as he did before all of this, but we know this move was the right thing for us both. My back took much longer to heal (in fact, the break got bigger before it started healing) because I had to continue to lift him and assist in transfers, but is it getting stronger every day. There is light at the end of the tunnel, and as always with any disease, we're keeping the hope alive for a cure! Always hold to hope. It is what will get you through any crisis. Because, we are all part of a big working machine and we don't want our world to get so small that we miss the bigger picture! You'll have black holes; sometimes you'll climb right out, other times, you'll be in there awhile, but you'll always have the great creator in there with you, so take heart!

If you haven't already signed up for PANC Conference this year, please do so. It's Saturday, October 24 and it's virtual so no need to go anywhere. The nice thing about it being virtual is that you can visit in and out all day long from the comfort of your own home. Sign up at https://www.panctoday.org/2020-annual-conference.html.

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Can You Hear Me Now?

In 2006 Jamey had DBS brain surgery to keep his Parkinson's symptoms at bay, at least temporarily. There have been benefits as well as drawbacks. Before surgery, the nurse practitioner, along with a group of doctors who specialize in this surgery, sat us down and educated us about the possible side effects of this serious procedure. While most of these issues had a very low percentage of occurrence, we still needed to be informed of all possible outcomes of the surgery. Something every doctor should do.

We both listened intently about the possibility of language problems, brain infection, programming shut-offs when going through airports, difficulty walking later on, and more. Most of these things were considered very unlikely (.5 to 1% range). All of the issues were a concern to us, but not a worry so intense we couldn't overcome them with faith. So we went ahead with the surgery, and over all, it's been helpful. We were told the benefits would only last about 5 years, but here we are in year 14 and he is still getting some advantages with programming the electrodes.

But, apparently, the unwanted results the original team listed, were not exhaustive. All these years later, Jamey has been presented with a  side effect that neither of us remember them mentioning; RFI (Radio Frequency Interference). Yes. His brain electrodes have actually become conductors for the internet!

Last week, he had all of his devices going; three computer monitors, a tablet, and a laptop. Now don't ask me why on earth he would need all of those devices on at the same time--I have never figured out the male mind where technology is concerned--but apparently it was the perfect storm for reception in his brain. He immediately heard a very high pitched hum inside his head. He likened the sound to the shriek you might get if you struggle with tinnitus, but more like a continual static hum. This unusual sound was coming from inside his brain! And it was reacting to the images on his computer screen. When an image on his screen changed, so did the tone in his brain. This happened several more times in perfect choreography with whatever was happening on his monitor; evidence it was not coincidental.

So, I'm thinking if we figure out the right sequence, add drums and bass, he can have a little jam session in his skull. Well, I thought it was pretty cool, but admittedly, I'm not the one with the annoying sound playing inside my head. I do wish he could have intercepted a full-on conversation from a space station or something, but I guess that's asking a lot.

I don't know if this new experience is a pro or a con. But I'm thankful that when the end of the world hits, we won't need to take along a hand-crank radio to keep up on what's happening. We'll simply put Jamey under a power line and listen to his brain for updates!