Tough Mudder

The Tough Mudder is a hardcore obstacle course designed to test your strength, stamina and mental grit.  There are even electric shocks along the way to keep you motivated?! The course emphasizes teamwork and camaraderie, but its more about completing the course and pushing your limits, than it is about speed.

Caregiving is my Tough Mudder. It's a long race I'm on, and just when I'm feeling pretty good about it and think I have got it under control, I hit another obstacle (an electric shock if you will). There is nothing consistent or expected with Parkinson's. It's a constant rehearsal of things you hope will continue but pray won't. There is no training for this job. Even those who have run this race before you, have run a completely different race with different obstacles and different outcomes. So, we muddle through the mudder as best we can.

We have been on this journey for more than 27 years now, and in some ways, it isn't any easier now than it was several years ago, in fact, it's a lot harder in many ways. The key is to keep being persistent and not give up or give in.

Lately, I've been feeling discouraged and worn out--certainly a human response for a journey like this one. But I've decided I need to look at all the great blessings we have instead of wallowing (as much as I'd like to wallow--I get more sympathy😏). And we DO have an enormous number of blessings! It could be so much worse. All I need to do is look around at my fellow seniors in our Independent Living Community, to see how much worse it can be. Yes, our lives are challenging. But would I want to trade places with someone else? ABSOLUTELY NOT. 

I believe God knows what we can handle, and he gives us just enough grace for the day to take care of it. Isn't that amazing?

As the PD Dementia gets worse and the body no longer cooperates (his or mine) 😉, I'm trying to remember all of the positive things that we have and all we've learned throughout this process. That really makes the road much more pleasant to live with, and to love with.

So, here we are, almost 3 decades into it. This is one tough mudder, but we'll keep on keeping on and focus on the good things we've been given to take us on to the next part of the course!

We're up for it. Are you?

DAYTIME SLEEPINESS

 

We generally know Parkinson's as a motor-symptom disease. But a significant part of the disease has non-motor symptoms that we should address as well.

One of the common disorders of Parkinson's involves sleep...or lack thereof. And sleep disorders of PD can start well before diagnosis or motor symptoms appear, sometimes even years. 

Sleep disorders can include, but are not limited to, dream-acting-out (REM behavior), sleep apnea, difficulty falling/staying asleep, excessive daytime sleepiness and fatigue in general.  Because PD affects the muscles and movement of every part of the body, sometimes the eyelids will become too heavy to keep open. This is a condition called Blepharospasm, where uncontrollable spasms force the eyelids to close. This sometimes accompanies PD. 

Some of the undesirable sleepiness is due to the fact that your loved one isn't getting good sleep at night. For instance, even though dream-acting-out is a behavior that only occurs during the deepest sleep, the talking and acting out during REM actually causes more fatigue and can actually cancel out the deep sleep your loved one should be getting. 

Changing medications; stopping some, and even changing the time the meds are taken, can make a difference. For example, if you take vitamin D at night, you might start taking it at the beginning of the day instead, as vitamin D is like a shot of sunlight and promotes wakefulness. Your neurologist or GP should be able to help you make wise choices about what might work better for you.

Some other suggestions might include increasing socialization, exercise, mentally stimulating activities, or lifestyle modification. Whatever you and your doctor work out will be the best way to handle the daytime sleepiness for you. 

Just remember, exercise is always the best solution for every Parkinson's symptom!

WHEN A CURE?

One of our dear friends was diagnosed with Parkinson's today. We are heart-broken for him and his wife, but also know this is an encouraging time to be diagnosed because of the tremendous strides they are making in research of the disease.

There are so many cases of Parkinson's in the world today; the disease rarely escapes our inner circles. You probably know, or are related to, at least one person who has been diagnosed with Parkinson's Disease (PD).

Parkinson’s disease (PD) is a brain condition causing movement, mental health, sleep, and pain issues. The prevalence of PD has doubled in the past 25 years, with over 8. 5 million individuals with PD in 2019. Nearly one million people in the U. S. are living with PD, with the number expected to rise to 1. 2 million by 2030. A 2022 Parkinson’s Foundation-backed study revealed that nearly 90, 000 people are diagnosed with PD every year in the U. S., indicating a significant increase in the prevalence of PD over the past 25 years. 

We live in an exciting time for Parkinson's research. There are several options for alleviating symptoms. particularly for recently diagnosed individuals. And there is a great deal of money being thrown into the ring for research. Just a few of the offerings for relief are:

      Stem-cell Therapies (Stem cell matrix may contain a rich mix of naturally occurring biomolecules such as collagen fibers, elastin, hyaluronic acid, proteoglycans, growth factors, cytokines, chemokines, and exosomes, placed in patient body to boost dopamine production, immune production and more).

      DBS (Deep Brain Stimulation, placing electrodes in the brain and running a line to a stimulator in the chest to stimulate movement).

      Medication (Synthetic Dopamine to replace lack of body's production of natural Dopamine).

      Neuroprotective Treatment (Maintaining maximum calcium levels for ultimate Dopamine production).

      Gene Therapy (Gene therapy is a category of treatments that involve introducing DNA into cells in an effort to alter which proteins are created and thereby improve symptoms).

      Clinical Trials (No-patient-cost research trials to find answers to symptom relief or cure).

      Exercise (Exercise routine to produce natural Dopamine in the body).

PD research has progressed enormously in recent years. Scientists are rapidly working to unlock the mysteries of Parkinson’s, and treatments that restore lost function, halt disease progression, and prevent the condition are now realistic goals. Studies funded by the NIH have identified several genetic mutations that make individuals susceptible to Parkinson’s disease and breakthroughs in genetic research make finding new genetic factors easier and more efficient. A number of promising new therapies have been developed and are currently being tested in animals as well as people. As scientists work to learn more about the underlying biology of the disease and the complex interplay between genetic and environmental influences, new biomarkers will be discovered, therapies for relieving PD symptoms will continue to improve, and ultimately the disease may be halted, reversed, or even prevented from occurring at all.

Every person who is touched by this disease, should be hopeful for future breakthroughs. And I am still a believer that prayer continues to be the best option!

https://www.ninds.nih.gov/health-information/disorders/parkinsonsdisease

Eat it, Just Eat it!!

Most of us eat what we want without much thought about what the food is doing to us. When we were younger, we could eat whatever we wanted without much consequence. But now that we are older, there are more things to consider.

God's original design for food consumption was primarily to be fuel, but I believe He also gave things good flavor so that we would enjoy eating too. Of course, we have gotten where over-indulgence is the standard instead of the exception, and that often wreaks havoc with our bodies. As we get older there are certain things to consider, and if you have a neurological disease, there is even more to take into account.

This is not the time to be lazy about your diet. In Parkinson's for example, the lack of dopamine in your system does not allow your body to process foods like it used to. Not only is constipation a common ailment, but if you are eating the wrong things, you might find you have frequent diarrhea and more bowel movements in a day. You might not care about that, but for a care partner who spends time cleaning you up, that might be a concern!

The best advice I can give is "BALANCE". If you feel you have to eat those chips, then at least have a good helping of vegetables along with them. Any greasy foods like potato chips, processed foods, fried foods, rich meats, and dips, will cause your stools to slide right through you. So, compensate by eating more bulk; legumes, bananas, berries, almonds, sweet potatoes, apples, quinoa, broccoli. You can get an extensive list from our doctor or from the internet...easy peasy.

If your loved one is a picky eater, find a couple of bulk items on the list and figure out new ways to fix them. It might be a challenge to find a good balance for some but keep trying. Make it a game. Try to find a new way to fix an old meal and see how well your loved one takes to it. The internet has amazing recipes for just about anything. If you have access to Alexa or Ciri, ask them to find a recipe that uses the ingredient you want. Our world of technology is a great assistance.

Finding healthy balance for your loved one's diet can make a huge difference in the way your loved one's body processes. And in turn. it might free up a little time in the care partner's schedule, too. And that's a win all around!

DEMENTIA; The Gift That Keeps On Giving

Several months ago, around Christmas, I discovered some discrepancies in our checking account. Now, I do all the finances (Since PD took over) so I couldn't figure out what was going on. Well, turns out PDD (Parkinson's Disease Dementia) was going on! It is always finding new ways to show itself, and this time it really did a number on us. It's actually taken me this long (6 months) to get it all straightened out and be able to share it with you all. 

I began to see extra charges in our checking account--charges I hadn't made. When I asked Jamey about them, he said he hadn't made them either. I spent hours on the phone with the bank, with subscription companies, etc. Well, it turns out, he HAD made the charges. He just didn't know he'd done it. (There's that self-unawareness again). 

When all was said and done, he had opened up multiple subscription accounts and changed most all our passwords. He had 3 subscriptions to Paramount TV, 2 to Apple TV, several Pay Pal accounts and many more. When he couldn't get into an account because he'd forgotten a password, he'd simply open a new one. He just pushes buttons when he can't get what he wants and pushing buttons creates charges as well. The added subscriptions amounted to almost $800 a month for several months, until I was able to reach all of the companies (and that is a challenge in itself these days).

Here are the steps I had to take. Maybe this will help other caregivers in dealing with a similar issue.

1. Identify the problem account(s). 

2. See if you can take care of it online (I found I had to call most and talk to a real person). Unfortunately, in this day and age, it's very difficult to reach anyone. I spent many hours on hold, just waiting for an actual person to help me.

3. Explain the dementia and see if they will consider wiping out the last month along with future months. (In the case of purchasing movies, they will not refund monies if the movie has already been viewed, even partially).

4. Put blocks on everything. Many companies will send a pin code to the designated "parent" so you can choose to give your loved the pin or hold it back. That way you always know what is going on in your account. The unfortunate thing about subscriptions to TV programming, is you cannot prevent someone from opening another account. If your loved one has good credit, they can go and open another account and you might never know. Streaming services don't care how many accounts you have open--it's money in their pocket.

5. I check the bank statement frequently. Any change? Get to the bottom of it quickly.

6. Because I am not savvy in technology, I had a trustworthy young man from church help me out. He was able to close most of the accounts for me. The biggest problem was figuring out the passwords.

We got everything in pretty good shape but then I noticed still another charge each month. Turns out Jamey had another Pay Pal account that he didn't remember, and they were taking money out each month for something he wasn't even using. That had been going on far longer than 2 months.

I'm still finding new purchases some months, but I've been able to catch them quickly. Most companies will not allow you to block an account from an account holder, so you have to close out that specific account or subscription, completely, and reopen a new one in your own name. Don't even include your loved one as a joint name. This won't solve the issue of opening new accounts, but you'll at least have a handle on current finances.

I would encourage you to talk to your loved one before you encounter anything. You can set up child blocks, even before signs of dementia. It only adds a short step to the buying process, and you'll never be "surprised". If you're in charge of the finances, make sure you're checking every month. Part of our problem was that I didn't check in with the bank as often as I should have. I paid for that, in more ways than one.

Since the computer is one of my husband's only sources of entertainment, I'm not ready to take that from him yet. But I keep a very close eye on what he's doing and what he's watching, now.

We lost quite a bit of money from this little dementia episode, but it was a valuable lesson. Never assume anything, keep a good eye on your finances, and always know what your loved one is doing. I must admit, it's difficult to be aware, without nagging or hovering, but it's important to protect yourselves from the beast that is dementia!

The Nitty Gritty

When I first started writing this blog it was intended to be, not only therapeutic for me, but also a help to other caregivers in similar situations. Not knowing what the future held, I hadn't envisioned the possible embarrassment of my husband in disclosing intimate issues to others. However, what benefit do we get from our trials, if not to make someone else's life a little easier by sharing what we've leaned along the way?

"Blessed be the...God of all comfort, who comforts us in all our affliction, that we may be able to comfort those who are in any affliction, through the comfort with which we ourselves are comforted by God."     II Corinthians 1:3

So, in an effort to comfort or shed light on Parkinson's Disease Dementia (PDD), we're bearing all, so to speak. I don't share these things to freak you out or make you fearful (and certainly not to embarrass my husband), but to prepare you in the event you have to walk a similar road. I wish I had been told some of these things ahead of time, myself.

Because Parkinson's Disease and Parkinson's Dementia is different for every person, you may or may not experience some of these issues (and I pray you don't). But this is what we're dealing with, 26 years into the disease.

As you know, if your loved one has a form of PD, Dopamine controls EVERY function of the body. If you're not getting enough Dopamine in your brain, all body functions go haywire. From bowels to temperature regulation, to movement, speech and cognition. It's all affected.

For me, the most concerning issue, because it's frustrating, is "self-unawareness". Weird term, but that's what the neurologist calls it. Jamey can be doing something and be completely unaware he's doing it, or the reverse; thinking he's doing it and he's really not. This is especially disconcerting in the bowel department. He is often unaware that he's having a bowel movement (BM) when he actually is. That's not horrible since he wears pull ups, however, sometimes he'll pull off the undergarments while in the middle of the BM, and that's when things get messy. Literally. When he's having self-unawareness, it can last for days at a time. Because he doesn't eat things he should (I have finally given up nagging--you have to pick your battles), stools are often runny or hard. That can also be a byproduct of PD, but it helps if you eat properly. He also eats all day long because he moves and has to refuel. So that creates the need to 'go' more often--as much as 3 or 4 times a day! There have been days when I've cleaned up him and the floor, turned around and had to do it all over again just a few minutes later. This can really wear out the caregiver. On days like that I feel I'm in a constant state of clean-up. 

While self-unawareness is frustrating (for us both), apathy is the thing that makes me feel like 'the maid.' I know it's not his fault. It's all part of this wonderful little thing called dementia, but he often has no conscious understanding that I am having to do a very difficult job all day long, and I get tired. I'm the kind of person who needs affirmation so when I get none, it creates a sadness in me, that sometimes carries over into my caregiving. 

The cognitive lapses can be frustrating as well, not only for the caregiver, but for the loved one too. For the most part, in PDD, the loved one is completely aware of what's going on. That's got to be difficult. My husband was always great at technology and never really needed to think about it. It always came naturally to him. Now, some days he cannot even work the remote control for the TV. For someone who's never had to think twice about how computers or phones work, it must be more than frustrating to not understand it any longer. That can be aggravating for the caregiver as well. Having to do research to find out how to do things they used to have the loved one do.

There are so many other strange things going on in the bodies or our loved ones with PDD, and I will surely cover some of those in other posts. But these were the ones fresh on my mind, having just come off of a couple of "cleaning" days. 

So, with that said, I do have some suggestions for you diligent caregivers. These are things that have gotten me through, at least partially. 

1. First and foremost, take the focus off of you and what you have to do. It can get overwhelming to think about cleaning up poo after having done it several times already. But, if you focus on JUST the task at hand, it will be much more manageable...maybe not enjoyable, but manageable.

2. Try and put yourself in your loved-one's shoes. It's not fun for them either--to be cleaned up by someone else. If they're lucid at the moment, that's got to be embarrassing and maybe even humiliating for them.

3. If you pray, do so. Your faith can help tremendously. Or count to ten, leave the room for a few minutes, or take some deep breaths. Give yourself time to process and start over. Just realigning your thoughts can help.

4. Find a distraction. I'm not very good at this, but Jamey's caregiver is amazing at finding something funny in everything. She keeps us laughing all the time. Actually, she keeps herself pretty happy too. :)

5. Remind yourself that this won't last forever. Even when it seems like forever, it really isn't. At some point you might even miss caring for your loved one. After all, the alternative is far worse. Try and be in the moment and find something good in it. Trust me, there will always be something good!

There is no perfect answer to getting through difficult times on this journey. But if you try and remember you're in this together, it might be easier. Even when I'm feeling less loved because of apathy and exhaustion, I can remember this is just a small moment in time and things will change. Let's face it, Parkinson's is always changing! It never stays the same. 

I guess that's a good thing in the long run.

NOTE: You might remember an earlier posting, ("Strange Med-fellows", March 2022) where I attributed self-unawareness to a medication issue. That was true, then, and that's been taken care of. But dementia is the current culprit and that's one we can't just reduce in dosage! 

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!

______________________________________________________________________

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!

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.

..

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!

The Mask!

Jamey hadn't been out in over 2 months, other than once to his sister's house for a game night. Nothing where he had to wear a mask. He'd seen me make numerous trips to the market with my mask in tow, but he'd never had occasion to wear one himself.

So, he finally had a routine doctor appointment scheduled for his Botox treatment (well overdue because of sheltering). He didn't own a mask because there had been no need up till now. With his COPD I was a little apprehensive about him wearing one and impeding his breathing. But, since it was required, I whipped him up one to match his power chair--black and orange with Giant's logos all over it. This is not an easy undertaking when there is absolutely NO 1/4" elastic left available in the world. Okay, ties
it is. At least with this one he can make a fashion statement.

When it was finished, I tried it on him. Oh, boy, I knew we were in trouble. He couldn't even stand to wear it for the few seconds I tested it. So, like any other loving wife and caregiver, I told him he was gonna have to get over himself and suck it up. I'm sure he'd heard this plenty from his coaches while playing on the many teams as an athlete. Right? Well, it didn't go over well, but he did realize he would have to 'just do it!'

So, we drove the hour to Sacramento and I unloaded him. When I put the mask on him, he promptly pulled it down off his nose. I told him it's supposed to be worn over the nose and he replied that he knew it. I left it at that because I figured Kaiser would put the kibosh his "viral style" when we entered the hospital. Nope, he sailed right on in. Past the questions-askers, past the temperature-takers, past the hand-sanitizer-sprayers. Whew, he made it. Now, we just had to get to the doctor and then he could take it off. I think he was hoping his Neurologist would cut him some slack because he's known him for so long and really likes Jamey.

We had checked ahead of time whether I could go in with him, because the instructions said patient only. But, because I often have to translate for him, I was waived. Of course, the waiting room was set up for Covid 19--proper 6 foot spacing around chairs, reception area  completely covered in plexi-glass. When the receptionist handed me my receipt, he actually had to crack the window open 2" to slide it to me, without contacting my hand, of course.

We waited only about 3 minutes and were called in by his assistant, who was wearing a medical grade mask. So far, Jamey was still wearing his, but now pulled up over his nose, as required. Okay, now we wait for the doctor. It was less than 5 minutes before Dr. Khandar entered, also wearing a medical grade mask. He usually shakes our hands, but this time; no. Although he was as talkative and pleasant as always, he went right to work getting things ready for Jamey's shots. He made a point of telling Jamey not to lower the mask yet. Jamey was obedient. When it was time for the shots (in the face), he lowered Jamey's mask just enough to get the needle into the 5 places they needed to go. Then, he put the mask back up again (after wiping the small amount of blood off him). No reprieve yet!

After the shots had been administered, Doctor K sat and chatted about his family and what's going on with Covid and Parkinson's research (he usually converses with us at length, so this was not unusual). But, poor Jamey had to sit there with his mask on like a compliant child. I could tell he was getting antsy.

Whatever works!

After the appointment, we got ourselves together and went back out to the car. Jamey actually left his mask on until we arrived at the car! Even I wanted to pull mine off when I got outside. I was very proud of him, and he didn't complain once, even though I know he hated it.

He did say he found it difficult to read the doctor's expressions and facial expressions with the mask on. He hadn't realized how much he depends on those cues to converse with people. All in all, the appointment went well. Now, he has to have an annual physical, virtually. I imagine that will be quite an experience as well, but at least he won't have to wear a mask!

GRATITUDE

In this time of COVID-19 an article about gratitude seems laughable. Instead, as we are each sheltering at home and limiting our social contact, it is easy to feel frustrated and depressed about the entire world and about our own world in particular. This brings to mind a speaker who spoke to the Renaissance Society at California State University, Sacramento, in March 2019. Dr. Robert A. Emmons, a professor at University of California Davis has spent the last 20 years scientifically studying the effect of gratitude on the well-being of individuals. Perhaps some of the things he shared will help put a different perspective on our current challenges.

Gratitude is an affirmation of the goodness around us and the recognition that this goodness is sourced outside of ourselves. Think of and be grateful for the grocery store staff and the medical personnel who are currently putting themselves at risk to help others.

Gratitude works emotionally, psychologically, and physically. It increases our emotional well-being. Studies show that grateful people get along better with others, they are less depressed and they are more resilient to trauma. Although gratitude won't make COVID-19 pass us by, it does have the power to help us heal, to energize, and to change our lives.

Medically speaking a person can practice gratitude without negative side effects. Research has shown that people who keep a gratitude journal have reduced blood pressure, experience better sleep, and are more likely to exercise and less likely to smoke. Gratitude leads to lower levels of inflammation in heat disease patients.

Why does gratitude work? Intentional gratitude amplifies the good in our lives, it reduces the bad in our lives and rescues us from negativity, and it builds trust in our relationships with others.

Gratitude doesn't come easily or naturally. We have to be intentional as we develop an attitude of gratitude. A concrete way to begin is by keeping a Gratitude Journal. Gratitude is POTENT in relationships; it also provides a good acronym for beginning our journals. Each day consider:

P - People who made a difference for us today
O - Opportunities we had today
T - Things: material goods such as home, transportation, food
E - Experiences we had today
N - Nature we can enjoy (some include [God] as part of nature)
T - Thoughts and our ability for reasoning, reflection, recall, awareness, recognition

If we choose to look at the world through grateful eyes, it will never be the same again. A grateful lens alters our gaze. Where we used to see burdens we can see some blessings, we used to see problems but now we see potential, adversities can now become opportunities. With Parkinson's Disease, this is a real challenge, but there are blessings and opportunities--find them and cling to them with gratitude.*


*Reprinted from The Parkinson Path PANC Newsletter Spring 2020.

Virtual Hug

It's the third week of the lock down, so I will attempt to post on our blog. But please forgive me as I wander along; my posting is sure to be a little disjointed as that is how I'm feeling these days as well.

Jamey's boxing coach has arranged several days a week for everyone to box and chat, virtually (Zoom app). It has been a blessing to be able to continue moving when we can, and still be in touch with fellow boxers in the class!  WW is also doing our workshop meetings with Zoom. It's been great! We don't feel like we're missing out on as much with this wonderful technology tool. Perhaps we all should have bought stock in Zoom before this whole thing started!

If this outbreak had happened even 20 years ago, we wouldn't have been able to do video chats, work from home, attend conference meetings, or do many of the things we are now taking for granted. It really is awesome. But, hopefully, the world will not choose to use this method after the outbreak is over. Even those who do not like hugging or personal contact, will surely miss the closeness of other people. God created humans to be in community. Separating from one another, even for a few months, is sure to take its toll on us all. I mean, a virtual hug, just isn't going to do it for most of us!

There are a couple of ways to look at this house-bound scenario; it's either going to bring people (families) closer to together, or it's going to drive a wedge into our relationships. Partners who are usually able to have time alone, are being forced to be together 24/7, and that can be a challenge for some. Perhaps, people are stronger than I think. I hope so. If not, we are going to have a lot of divorces when this whole thing is over. But, on the flip side...we might also have a lot of new babies; I mean, what else is there to do when you're stuck in the house all day?! 😊

Jamey and I have taken to playing more video games and/or board games together. We  spend time at opposite ends of the house; he in his man-cave, me in my she-shed, and then we meet in the middle, and do something together. It's been fun, but we ARE only in week three. Let's see how we feel on week four or five. 😃 I think balance is the key in all we do. Find something to do together, then, find something to do, just yourself. I realize not everyone has the space to separate like we do, but at this point, most of us can still go outside, so maybe that is an option.

Whatever you're doing, do it with patience and perspicacity, knowing seclusion, for the time being, is necessary to perhaps saving others. Find games to play, books to read, meals to cook, quilts to sew, prayers to pray, or whatever it takes to distract you. We are all in this together and we will all get through it together. We've been through some really tough stuff, so this is just another challenge on our way! God never said life was going to be easy, in fact He said it was going to hard;

 "...Here on earth you will have many trials and sorrows, . but take heart, because I have overcome the world." John 16:33

I pray you are all holding onto that hope. I know we are!