Parkinson’s, Pandemic and Masks

The Covid Pandemic starting early in 2020 and presented new challenges in trying to take care of Cal and keep him safe.  We spent his last month trying to get us a Covid vaccine shot, which just was not available at that time. 

Drooling and runny nose are two difficult Parkinson’s symptoms to deal with, without Covid and the necessary Mask Mandates.  Trying to keep our love-one safe during this time wasn’t easy 

The following are a couple of ideas to help dealing with Parkinson’s, Covid and Mask a little more manageable. 

Our daughter has a real serious woodworking hobby.  She suggested getting a “X- Shield:  ¾ Face Vented Clear Face Shield worn like glasses.”   I ordered Cal’s from  Amazon.  It was one of the best ideas ever and make the Doctor’s visits much more  manageable and safer for everyone we had to come in contact.  It made taking care of  his is runny nose and drooling. 

I used a LOT of the disposable style masks (the most comfortable early in the  Pandemic).  I kept a healthy supply of new masks and a plastic bag to hold used masks for disposal. 

Sideline:  We both wore vest with a lot of pockets for his “supplies.”  It was easier for  me to wear a vest than carry a purse in the beginning of the many medical visits.  (I bought a woman’s “Heirloom Garden Vest” from Duluth Trading Company, it looked a little better than a Man’s small vest)  Later, I also used a bag (the reusable grocery bags worked well) that I could hook a handle of the bag on each of the handles of the wheelchair. 

By the time the Pandemic started Cal was well into Advanced Parkinson’s which isn’t a  fun stage of this disease.  He could not consistently understand or remember that there  was a Pandemic and that it wasn’t just local, it was all over the world.  He would want to go out for Breakfast or Lunch at his favorite restaurants and would not believe me  when I told him they were closed.  He would tell me basically that I was lying to him  and just wanted to keep him trapped at home.  So, every once in a while, instead of  trying to reason with him, I would help him get dressed, get in the car and drive to the  restaurant.  Hey, getting out of the house in the car with just me was as safest as possible outing.  I would pull into the parking lot of whatever restaurant he wanted to go to and  we would go through the steps, 

1. Do you see the note on the door/window? 

2. What does it say?  

3. Are there any cars in the parking lot?  

Ok, so a chance to get out of the house for a little while.  I know the whole situation was hard on him, but taking a little jaunt helped calm him down. 

Hope this help, looks like this Pandemic is not ending soon.

-Peg

Hallucinations and Delusions

The first of the hallucinations/delusions was when Cal surprised me with “Patches,” a Calico kitty that had come to live with us.  Patches was the easiest pet to care for than any we had ever had and there had been a steady stream of dogs, cats, gerbils, fish for most our marriage.  This time no feeding, sand boxes, vet bills, cleaning up hair on clothes and furniture and shoveling poop required.  Later he did want us to pick up a couple of Tabbies, Pixie and Data, from the Seattle Animal Shelter as companions for us and Patches.  That worked out fine Cal told me that the three of them “played” well together.  The two new additions to our home, loved to cuddle on Cal when he was napping.  I finally found out what Patches looked like when we were at PetCo, Cal pointed out a picture on the side of a cat food bag that he said looked like Patches, now I knew what our invisible kitty looked like that sharing our home.  

This is an “interesting” symptom of Parkinson’s.  It was also made for fun sharing at Parkinson’s Support.  Cal was not the only Parkie (a term affectionally used at one of our Support Groups for the person with Parkinson’s) experiencing hallucinations, one of the Parkies had a Unicorn that escorted her to and from the bathroom in the middle of the night.  

These were benign hallucinations, nothing dangerous, harmful or frightening.   

Within a couple of years of Cal’s Parkinson’s Diagnosis, he made the decision that all guns needed to be removed from the house for everyones safety.  With the help of our children, they were removed.  This proved to be an excellent idea a few years later when the Parkinson’s had progress.  I was never in danger, but that simple step removed a very real possibility of a serious harm. 

Most of Cal’s hallucinations consisted of things like a racoon in a very large Camilla bush outside of one of our kitchen windows.  The Camilla was real, the racoon was not, he was concerned about the safety of Pixie and Data from the racoon if I didn’t run the racoon off, which I did when it “showed” up.  By that time Patches wasn’t around as much.   

One of the middle-of-the-night hallucinations was that there was an intruder in the house and I would have to go from room to room checking in closets, under beds, behinds doors, etc to make sure that no one was here.  It sometimes took a while for him to feel safe enough to go back to sleep.  We would talk, and I would reassure him we were alone and safe. 

The worst one was, funny now but not so much at the time.  I woke up out of a deep sleep in the middle of the night with multiple men’s voices just inside our front door and very close to our bedroom.  I sat straight up in bed (I am glad that I had long since given up on sheer night gowns) and yelled “What the Hell is going on?”  One of the Officers said everything was alright that Cal had called 911 and told the dispatcher that his Mother was dead in the guestroom bed (which is across the hall from our bedroom). There were several police officers, in uniform with big guns (not drawn) and several Fire Department personnel with their equipment and they all filled our entryway at the front door.  You could not have fit one more person in our entryway and it is a pretty good size entryway.  I informed them that his Mother was next to his Father at Washelli Cemetery and had been there since around 1985 and hadn’t been moving around that I was aware of….  I don’t remember exactly when this happened but sometime around 2012-2015, about 5 years after his diagnosis.  After I was able to explain to them that Cal had Parkinson’s, and there no way his Mother could be here they understood what had happened wished us a good night and if I needed anything to call.

-Peg

Bedroom Safety Ideas

First priority is to clear any furniture and/or throw rugs between the bed and bathroom.  The only exception I would make is:  

if you have something like hardwood floor, you may need a rubberized bathroom mat about 36” wide in the locations where the patients  

feet might hit the floor when getting out of bed.  Cal’s feet would slide before I figured that one out. 

Bedroom 

Railing for bed – Adjustable Height Bed Safety Rail  

There a LOT of styles to choose from, the type we used slipped under the mattress (the part under the mattress extended about  

3 feet it seemed to be far enough to keep the railing stable when Cal was getting up).  We used 2 railing, one at the head of the  

bed and one at the foot of the bed.  There was about 2’ – 3’ between the two which allowed Cal to use them like grab bars to stand up. 

“Friendly Bed” (Bill-Ray Home Mobility, LLC in Appleton, WI. (920) 257-4001 – www.FriendlyBeds.com, also made in America). 

This business is no longer in business.  Apparently, Bill and/or Ray was an Engineer that designed and built this to help a friend 

that had had a stroke that resulted in him having limited mobility.  This was a fantastic design and safe piece of equipment that was  

one of the major reason that we were able to keep Cal at home through his life with Parkinson’s. 

I am not sure what to suggest on finding something similar, but I do suggest/recommend DO NOT do an internet search for a “bed trapeze.” 

If you do, you may be spending a LOT of time cleaning up a LOT of unwanted emails.   

I don’t remember exactly how I found this legit company, but was it probably showed up among the porn websites that showed up when I did the original “bed trapeze” search.  When I found the website, I contacted the Police Department in Appleton, WI (We live way across the country from Wisconsin) the Police Department had no problems with the company, but suggested I contact Appleton’s City Government to see if they were a business in good standing with the city.  Someone in the office was heading to lunch and said he would drive by the address to check if there was a physical business at that address.  When he returned and before I got the call back, someone else in the office had attended a small business fair and knew about them and confirmed it was a small business and it was real.

-Peg

Progressions of Symptoms and What Worked For Us - Part 1

Tremors: 

When the strength of Cal’s tremors increased enough to interfere with his quality of life. our Primary Neurologist suggested we check out a new device that could possibly help.  It was worn on the wrist when the tremors were active to calm them.  It was called Cala Trio:  Essential Tremor Bracelet – you can be checked it out for yourself at:  https://calatrio.com for details.  It worked very well for Cal.  There was an initial charge and a monthly fee. 

Sometimes I would just hold his hand and gently massage his hand, fingers and arm it seems to help some and at least made his muscles relax and helped him feel better.  It was like a bit of a distraction even it didn’t always stop or slow down the tremors. 

Drooling:  

Botox shots:  For the cost to be cover by Medicare the shots needed to be scheduled 13 weeks apart. 
This was when Cal was having the shots, so probably a good idea to check with your medical insurance and/or Medicare there may have been some changes since Cal’s shots.  These shots really helped with Cal’s drooling; he got a reprieve for a few weeks.  There was a sweet spot in the middle of the 13 weeks that gave a lot of relief from the constant drooling. 

Through the Neurologist office Cal had been a part of a blind study to find out the effectiveness of Botox shots. 

Chewing gum:  Seemed to help and easy to use and he could choose flavors he liked.  It apparently helped Cal to remember to swallow.   

Runny Nose: 

I recommend LOTS of handkerchiefs about 12” square, 100% cotton (much more absorbent than the permanent-press type) and white (easier to bleach if needed and they are reusable, cheap and don’t fill up landfills.  Over time we ended up with 100+.  I didn’t have to do the laundry constantly because we ran out.  They don’t take up a lot of space in the wash 

Muscles tightening up: 

Well, Cal’s muscles seem to be fighting him and just wanted to tighten up.  He would be sore in many parts of his body, back, shoulders, hands the his toes on his right foot curled up like what Cal’s “Monkey Fist,” his finger would cramp.  Our Primary Physician, and MD, of many years asked us if we knew any good Chiropractor that possibly had masseuse that would give Cal a deep muscle massage after his adjustment, under the direction of the Chiropractor on which areas to concentrate on.  It just happened that a young couple move in next door to us and they both had their own practice.  The husband’s practice had about four masseuse, Cal went in weekly and it really helped Cal’s muscles to stay loose. 

Our Primary Doctor and the Chiropractor consulted often to determine Cal’s treatments. 

These appointments seem to slow the physical progression of Cal’s Parkinson’s for several years.

-Peg

Dealing with Guilt

This one is a little different. No gadgets or cool techniques.

I don’t live near my parents, I haven’t for several decades. I typically made it up to see them a few times a year and, early around the diagnosis, my family did a road trip to see me.

As the disease progressed I wanted to do more. My family was burning themselves out to try and keep some semblance of a normal life while I was just living my life a couple states away.

I felt guilty. VERY guilty. Do I upend my life that I’ve built here? Do I move away from other people I love? Quit my job? Sell my house? I saw a therapist about it and came to terms.

There are a few things I learned:

• I can help from a distance. Just talking to Dad on the phone made him feel better, gave Mom a little time to step away and decompress. When he started making less sense, I would let him go down the path his mind was on. Sometimes I could follow, sometimes I couldn’t. Sometimes I had insight on where the strange paths came from. We spoke often. The last thing we said to one another is that we loved each other. That means something.

• On visits I provided perspective. Dad asked for this specifically. The rest of them were too close and saw him too often to see things that I could see with visits a couple months apart. When I got home, I wrote Dad emails about what I saw - was he weaker? confused? coherent?

• Second wave support. This is an important one. Ray and Mom were the first wave, getting Dad to appointments or watching him. When the time came that they needed another person in the mix, I could be there the next day.

• Listening. I can’t stress this enough.

• Providing frank feedback. Okay, that’s a nice way to say that I yelled at everyone. I don’t yell as a rule so when I do, it gets attention. I think it was to ultimately positive effect.

So if you are the remote family member, guilt is real. It’s okay to feel guilt. Figure out what you can do and start from there. No two situations are the same. Sometimes you will have to move. They are called hard decisions for a reason.

Don’t sell yourself short. You may still be able to help from where you are.

-Rachel

Bed Choices

Long time before Cal’s Parkinson’s diagnosis we had settled on Sleep Number Bed because we could not agree on mattress firmness of other beds.  With a Sleep Number bed, we could each adjust our side of our bed for comfort 

Cal initially wanted me to replace our bed with a hospital bed.  This was after he had had to have surgery, in March of 2016, for a condition called Achalasia, a condition that may or may not have anything to do with Parkinson’s.  I will cover that situation in more detail later.  After his surgery he needed the head of the bed to be raised while sleeping. Hospital beds don’t work well for cuddling so we settled on a different option. 

Our replacement bed choice was a Split Queen it didn’t work for us.  This bed raises the head of the bed on both sides of the bed to the same height. This just didn’t work for me I can’t sleep comfortably with the bed raised as high as Cal needed.  

We exchanged it for a Sleep Number Split King, both sides of the head of the bed worked independently, which worked much better for us.

-Peg

Trial and Error (Part 1)

We tested quite a few things to help Dad out as the disease progressed. Some things worked, others didn’t.

Worked category:

Music: A major issue with Parkinson’s is ‘freezing’. They are not able to move. This usually happened to Dad while he was standing and we would notice that he wasn’t walking anywhere. Sometimes, he was just thinking. Other times he was stuck. The impetus to start moving didn’t get through to his muscles.

When we were lucky, a simple handhold would start things going. Simple rhythmic music was often a good solution. We set up a playlist full of marches (think John Philip Sousa) that we would call up on the Amazon devices. When we did, he would start moving slightly and then more and more. It was very helpful.

TENS: At one point, Dad’s shoulder was pretty hurt. He was on so many medications, we had to be cautious with drugs. His shaking was bad enough that surgery was risky. A TENS unit sends little electrical zaps into the applied area, stimulating the nerves. These devices are over the counter and they stick on your skin. The user adjusts the frequency. Since a nerve can only feel one thing at a time (it is how it was explained to me, don’t know if that is medically correct), the user can feel the buzzing of the TENS unit and not the pain.

It worked to a certain extent. As a bonus the shaking on that arm calmed a bit during the treatment.

Didn’t Work Category:

The severity of Dad’s symptoms fluctuated. Good days and bad days. Some factors that contributed are:

• Medication (Major factor) - frequency and timing.

• Sleep

• Exercise

• Diet

It was difficult to determine direct correlations so it was likely to be a combo of all these things. So I decided to get some data. I wrote an app for his Apple Watch that would measure when his shaking happened and hopefully the severity. If I could correlate the episodes to the other factors then we may be able to figure some things out. It didn’t work for a few reasons. (one of them being a very good reason - a group of graduate students working with our parents on a watch to control shaking).

My issues were:

• He wore his watch on the non-shaking side.

• For the watch to measure, the battery drained too quickly.

• A group of graduate students from UW were testing a watch with him to control shaking. Two watches would be a bit much and might mess with their testing.

I never got to the point of him trying it. I think it would have frustrated him at the point I got to.

The things we tried are a major part of what I wanted to share. This will be a multi-part article.

Diagnosis - Now What?

These are just project to think about getting done before the progression of the diseases become a problem, if possible to make life a little easier.  Not everything needs to be done immediately. 

1.     Find a good and highly recommended Neurologist (probably a good idea to find one ASAP) – you will need them for prescription medication and information.  The sooner you get the appropriate medication started the better to slow the progression of the disease 

2.     Parkinson’s Support Group (or a support group available for the disease you or your loved one is dealing).  It is helpful to learn, share with  others that are sharing the same experiences. 

3.     Attorney (Need to get these done while your loved one is able to make their wishes known).   

1. Last Will & Testament

2. Durable Power of Attorney

3. Community Property Agreement

4. Durable Power of Attorney for Health Care Decisions

5. Health Care Directive

4.      Start clearing the traffic pattern in your home and the path need to go to your vehicle.  The second reason to avoid tripping hazards. 

1. It may be necessary to rearrange furniture

2. Keep in mind that sometime in the future (hopefully a long time in the future) your loved one will need clear pathways that can accommodate walkers, transport chairs, wheelchairs

5.     Chiropractor & Masseuse (Parkinson’s tightened up Cal’s muscles and joints) 

1. This was a great suggestion from our Primary Medical Doctor

2. Our Chiropractor had multiple Masseuse that work at his practice.

3. The reason: To keep Cal flexible as long as possible

4. It really helped Cal for several years.

6.      PULSE form (Physician Orders for Life Sustaining Treatment) 

1. We received it from our Primary Doctor’s Office

2. Our Doctor came to our home for a “Safe Check”

3. Our Doctor help go through the PULSE form so that we knew exactly what each choice would mean so that we make educated decisions.

4. Make multiple copies. Distribute copies to: Every Doctor, Hospital, Multiple copies at home for Emergency Medics, one stapled to the “Medical Prescription & Supplement” form that should be carried on your person at all time. Always have extra copies.
   
   

7.     Travel – Enjoy some travel

-Peg

Feet

For several years the symptoms increased slowly

After decades of wearing Suits with coordinated suspenders, ties, and leather sole (dress) shoes then the Business Casual became the norm but still leather sole shoes

Feet and footware transitions:

After Parkinson’s joined our family, leather sole (dress) shoes got replaced completely, too slippery, and not enough give and just plain uncomfortable. …and after a very few years his feet shape and shoe size started to change. Not something we were expecting.

Tennis Shoes: The dress shoes were replaced at first with a variety of tennis style shoes, far more comfortable and not slippery, better footing for him. …and he was still able to walk with or without a cane and we were able continued square dancing for a
couple of years until his balance became compromised while dancing, so we retired from square dancing, it had been a good run.

Calf length socks were replaced lower styles, easier to get on and off

Slippers: I don’t really recommend them, even with rubber soles, the person can step out of them too easy and maybe trip.
Just be extra careful in your choice of styles if they are choice.

Water shoes: Ray came up with Water Shoes. Bought Cal’s first in 2019. Cal’s toes on his right foot had curled up into
what Cal called a monkey’s fist and even without Parkinson’s it made walking difficult. This had been a problem for a long time.
(Cal’s right side of his body was considered Parkinsonian side – most of his initial symptoms would start there)
Shoes were becoming very difficult to find. I probably bought dozens of pairs off Amazon, thank goodness for their return policy.
By that time there was no way to get him to a shoe store.

-Peg

Automation - Our Method

We have a very techy family. Technology was always going to be a part of our efforts. However, we couldn’t just throw every bit of automation at the home, so we needed some ground rules.

1. It had to make our parents lives easier.

2. It had to be fully automated or have a minimal trigger.

3. No typing necessary to run.

4. Privacy considerations had to have the consent of all parties involved.

That means we had to test things. Ray and I both tried things at our homes first and we discussed with our parents before bringing things in. We tried to keep to a single ecosystem, in our case it was the Amazon system. Apple and Google were good but the Amazon integrations were something we could work with.

Amazons system has ‘routines’. You can designate a phrase to do an automated action. We only introduced phrases slowly, so as not to overwhelm the users.

• The initial commands/alarms covered:

• Time to take medication (both on the amazon devices and his Apple Watch)

• Control a few lights in the house

• Control thermostat

• Start a music playlist (This was very Parkinson’s specific - more on this later)

Ray added the buttons and they were a godsend. They look to be discontinued at the moment but if you can get some, we recommend it. Dad was mobile much of the time so he could be in another room of the house without someone actively watching him. Ray purchased the echo buttons that looked like gameshow buzzers. They were in every room of the house. If you pressed one, an announcement went to all the amazon devices in the house ‘Help needed in [kitchen]\[bedroom]\[living room]’ . Very helpful.

We also keep him up to date on his Apple Watch. Later ones had a fall detection feature that proved a little helpful (until he learned to crumple softly). The watch also let him call us whenever or wherever he was. I received a couple calls while I was at work this way. We used the ‘unlock with phone’ feature because the buttons on the watch were too difficult. Small buttons were impossible as the disease progressed, also the touch screens stopped responding all the time (we think his skin was too dry).

I’ll continue more of this subject later.

Dot Buttons

-Rachel

Diagnosis

Cal’s Parkinson’s was officially diagnosed August, 2008. I think that he had Parkinson’s for several years before his diagnosis.

I credit a dear friend, the wife of a square dance caller Lee Kopman, Lillith, a very special couple we saw only every couple of years (they were from New York and we live in Seattle) with us going to our Primary Doctor to have him checked to see what was “wrong.” We had left a square dance early (which was not something we usually did), by the time we got home we had about a dozen phone messages from Lillith and Joann that we were to meet them at a restaurant for dinner. ….and not going was not an option. When we arrived, Lillith pulled me into the ladies room and demanded to know what was wrong with Cal because “something was wrong.”

That just the beginning that lead to us to see the first of many Doctors over the next 12 years.

Earlier symptoms:
Physically - When we were going on our morning walks – both of Cal’s arms did not swing normally, his right arm was drawn up almost high enough to use a sling
Personality – his was suddenly subdued, Cal had had a dry since of humor, a quick wit, and so much more, his mind and ideas were going a mile a minute

If I can help anyone make a little easier to deal with any of the many brain degenerative diseases, that is my goal.

Peg

At Home

When Dad was diagnosed with Parkinson’s, he was already showing a decent amount of symptoms.  After the diagnosis, we as a family did some research about disease progression and made our decisions based on a primary goal.

Keep his quality of life as high as possible.  

That meant meant keeping him at home as long as we could. If we could keep him safe and happy, that would count as a win.

We did a lot of the conventional things you would expect but we also did some things that weren’t initially obvious.  Dad was always a planner and he was way ahead of the curve on things he would need.  This is our opportunity to share some of the things we did.

 1.      The Bed.  As the disease progressed, he grew weaker.  We purchased an adaptation for the bed, a frame of various bars and gates, that allowed him to get in and out of bed by himself (some of the time)

2.     Internal cameras.  Mom was Dads primary caregiver.  It’s easy to forget how much toll that being a caregiver takes.  While he often could get himself out of bed, often he needed help.  Internal camera with an iPad let Mom step away, have breakfast, do laundry, take a moment for herself while he slept.  It is trading privacy for convenience and everyone needs to make that decision for themselves.

3.     Key box.  Build a good relationship with your local fire department.  They are crucial after falls when they fall and can’t get back up.  Our fire department asked us to put up a coded key box so they can get in.

4.     Echo Dots.  Amazon sold these buttons that look like they were from a gameshow.  We purchased several of these and set them up in every room of the house.  Then we set up a routine that said ‘Need help in [room of the house]’ on every Amazon device in the house.  Think of it as a localized panic button.  This is very helpful and eliminated a lot of screaming for help.

5.     Speaking of Amazon devices, we set those up too.  Trying to dial a phone with his hands became very difficult.  With an Amazon show, he was able to call any of us just by asking.  If you name the devices differently (Alexa, Amazon, Echo), it helps to make a label for each device with its name. Eventually calling out to the devices became more difficult (Alexa kept being pronounce Alex-ee-ah) but they seemed to work most of the time.

6. Medically, our parents were incredibly well organized. They kept a running log of vitals, symptoms, events and they were lucky to have Doctors that were engaged and willing to partner with them. It wasn’t truly just luck, they were decisive when a provider wasn’t up to their standards.

The spreadsheet they kept unhand at all times covered procedures, medication, reactions, a list of their providers with contact info and a myriad of other things. The times they had to go to the hospital, this information was extremely valuable.

This is going to keep going, we’ll go into home automation strategies (what worked and what didn’t). How did we deal with changing symptoms and personality changes, whatever comes to mind.

This is a cathartic endeavor for us and we hope our experience helps the next folks going through this.

-Rachel

Welcome and Purpose

Dad (Cal) had advanced Parkinson’s. Early in his diagnosis he was very aware of where he was, his limitations and how he was likely to progress.

Always a planner, something he instilled in all of us, he set out some basic goals. Most of these had to do with Mom (Peg) and to make sure she was taken care of and that taking care of him wouldn’t become too difficult.

The rest of us, Mom, Ray, and myself (Rachel) had a corollary goal - keep him at happy at home as long as we could.

He passed away at home about a year ago.

This is our chance to explain the things that worked, the things we tried and failed, the bizarre ideas that turned out useful. How did we stay organized?

Ray and Mom were up there with him. I live a couple states away. Obviously our contributions were different. I’ll give my ‘observations and contributions from a distance’ perspective.

If you have questions, let us know