Guest Blog - Parkinson's: The Bigger Picture

"Sara! Come sit down with me and listen to this song." Youtube is calling again and with a sigh, I try to find an excuse to get to the kitchen and help my mom with the dishes or take the dog out for yet another potty break. You see, my dad sits comfortably in his La-z-boy recliner for the majority of the day (which is hours on end), watching the endless classic rock videos taking him back to the normal life he once experienced and enjoyed...the life before Parkinson's set it.

All those around him are searching diligently to find some purpose of life for him as he slips into an isolated "coma" of the mind. My father is currently in stage 4 of the disease. Lucky for him, his grandchildren keep him on his toes with the occasional, "Grandpa, catch!", as a workout ball comes flying at him full force. Or, the newest fuzzy addition to the family jumps up on him licking his beard uncontrollably, scampering for all those yummy scraps from the previous meal. He definitely gets his fair share of attention whether he likes it or not!

By far, I have the most caring mother a person could ask for. She is selfless  in every way towards my father. I mean, who gets a whole bowl of seasonal fruit, scrambled eggs and homemade whole wheat bread for breakfast everyday! She cares for his every need and takes on the burden of a life that was handed to her unexpectedly. We all make plans for the future and have goals we wish to accomplish. My parents longed to serve a mission for our church and travel the world together but the cards just didn't deal that hand.

The road has been a long, burdensome one. My parents have gone through the headache of 5 different neurologist who all think he needs a different medication, all with different effects that go along with them from horrible tremors to hallucinations. You have non-stop physical therapy, frequent dentist appointments because eating and brushing become very difficult, applications for breathing treatments, in-house care and the list goes on. Bottom line, those who are in this boat know that the storm is tremendous!

Now what?... Well, we all have that gift of agency. We get to choose happiness or sorrow. We can choose to mope around all day feeling sorry for ourselves or do something about it! And that is just what our family chose, to do something about it! We all decided to have an outing, at least once a month, to take my father out of his comfort zone into the great outdoors. Now, he does get outside occasionally but this is an outing that would involve a longer period of time with much more activity than normal.

So, off we go! This is where the story gets interesting. Every drug that has been prescribed to my dear old dad cannot give him the joy and stimulation that the outdoors provides. Just this last weekend we spend the day in a regional park, listening to the birds sing, watching the squirrels chase each other and laughed as we raced around in a 4-seater pedal bike. My dad had the chance to laugh, heighten his senses and experience a piece of his life before it all changed. I have to say that the worst thing for a patient with Parkinson's is for them to sit around watching TV or stay inactive. Their speech slows down, mobility is more crippling, overall they become completely immobile. We will all be making a better effort to improve his quality of life through the God given beauties of the Earth.

I think everyone would agree that the quality of life is more important than life itself. As loved ones and family, we choose quality of life for my father. As we accept the change Parkinson's has brought into our lives, we can now focus on those things we CAN change to make the quality of life the best that is possibly can be. That's the bigger picture!

Thank you, Sara, for sharing your story with us! 

Breathing, Eating, and a little Good News

This has been a week full of good news (mostly) and small victories. It's been nice, especially since last week was a little too eventful and challenging.

Last week:

I woke up early last Thursday, picked Dad up and took him to his Dr's appt to check his ears, then took him home, rushed home myself, fixed myself a peanut butter and honey sandwich and proceeded to eat it quickly so I could get to the school in time to pick up our grandson. Chris would have willingly done this errand, but he was on strict NO DRIVING orders while we waited for his pharmacy to screw up his seizure meds prescription one more time.

I choked on the peanut butter. Really choked. I mean really really — can’t breathe gesturing to my husband and daughter to call 911 and my husband doing the Heimlich maneuver on me while shouting at our daughter – kind of choking. Our daughter called 911, but even I could hear the phone just ringing and ringing. Fortunately, the Heimlich worked (so far*, thankfully.. and obviously, it always has) and, as no one had picked up the call yet, she just hung up.

This meant my husband had to explain everything to the nice person who called us from the police station and we all had to explain to the two nice policemen who came to the house and quizzed us and obviously had expected to find domestic abuse going on. Fortunately we got all that out of the way and I still had time to go get our grandson.

THIS WEEK!

Something is shifting with Dad in the ear department because he can hear better than he has for a long time. I got Mom’s computer to connect to the Internet and figured out why it hadn’t been connecting, then helped her find an old friend. Then checked my email and found a message from our Medicaid consultant with the word HALLELUJAH! in the subject line. Mom and Dad are back on Medicaid as of February 1st! 

And I got a referral for a swallow study and therapy!

Okay, while this doesn’t sound like fun, and sitting together watching a video of “Breathing and Swallowing in Parkinson’s Disease”  (starring Roxann Diez-Gross, PhD, SLP-CCC) isn’t the most romantic way to spend an evening, I realize it’s all good for our relationship. As lovely as it is to have my husband come up behind me and throw his arms around me, it’s much nicer when he isn’t doing the Heimlich maneuver and I’m not choking and spewing bits of bread and peanut butter across the room.

Swallowing issues with Parkinson's and Dystonia are serious. If you have any of these symptoms, check in with your doc:

• Chronic coughing, especially during or after eating
• Increase in phlegm
• Food collecting around gum line
• Feeling like your food is getting stuck in your throat
• Having a lot of heartburn
• Sore throat/hoarseness 
• Frequent choking

Make sure your family learns how to do the Heimlich maneuver and you know how to do this on yourself. Talk with your family or close friends and go over the drill. If you choke, make sure you or someone else calls 911. Even if you can't speak, they'll know something is wrong and will send someone to check up on you. Don't hang up.

Watch the video, too. Dr. Diez-Gross has some wonderful information here and the tips she gives really, really help.

*this is the 6th time for me

Release and Receive - my 2017 resolutions

Mo was reading the last blog post and concentrating. I knew as soon as she finished, she'd be right there with her opinion about what MY resolutions should be. I was ready for her. I already had my resolutions worked out. She wasn't going to tell me what to do.

Mo:  Okay already, go for it.

Me: I will release my expectations of what each day is going to be; what I will get done and where I might go. As a caregiver, my plans are so often changed by one phone call. As someone with a chronic health challenge, I never know exactly how I'll feel. I won't stop making plans to do things, but I will release the expectation that it will go the way I plan.

Mo: Not bad... continue.

Me: I will work on truly enjoying what I  must do: Enjoying my dad's humor when I take him to the grocery store; relishing the stories my grandchildren tell me in the car and the creations they build all over the house; appreciating the extra space and tidiness of my parents' apartment while I clean and put away their things.

Mo: Good so far. Maybe one more to release and one more to receive. That will be enough for this year.

Me: I will release my expectations of what my body can do and how much I can accomplish other than what I must do. I have so wanted to volunteer and give back to the many people and organizations which have been so generous to us and others. Last time I tried, I was so exhausted, I think I hallucinated - just a little.

Mo: We won't go into the hallucination thing. Someone might get the wrong idea about me.

Me: Thanks, Mo. We won't mention it. Anyway, I will work on releasing these expectations again and again and again. And I will receive joy from working on aging courageously - not giving up, not stopping, but not trying to be young, either. It sort of all goes together, releasing expectations of who I thought I was and receiving joy in who I am.

Mo: Yes! I know you have plenty of role models in this category:  your grandmother "Gram" Leota Myers, your mother-in-law Natalie Reinhart, your yoga teachers Paul and Caroline Zeiger..

Me: And my dad. And even though we lost so many celebrities last year, we still have Harry Belafonte, Jimmy Carter, Bob Newhart, Betty White, James Earl Jones, Leslie Caron, William Goldman, Dan Rather, Dick Van Dyke. I remember being told to enjoy my high school years because they were the best years of my life. I was pretty bummed hearing that at the time. We can't become conditioned to thinking just horrible stuff about getting older.

Mo: Gotcha, now while you're releasing your expectations about what your body can and can't do, there's one more resolution for you. How about giving up peanut butter? I'm sure Chris would appreciate it.

Me: Already there, Mo. I'm thankful I have a husband who knows how to do the Heimlich maneuver when I am eating on the run and choke on a peanut butter sandwich. I think he'll live longer if I don't stress him out like that any more than absolutely necessary. Peanut butter is history. Now Mo, what are your resolutions?

Mo: Releasing the cork on this bottle of wine and receiving a glass to pour it into. Payment for my services! Cheers!

Keep It Simple

After giving this topic a great deal of thought and reading what other people do at this time of year, I came across a lovely practice shared by yoga instructor, Carol Dearborn, RYT. I was given permission to re blog this by Sarahbeth, who posted the article on caregiving.com. I suspect Mo will approve.  Here it is:

KEEP IT SIMPLE

RELEASE one thing that is not making you happy/or will help to reach a goal:

     Want to lose those extra holiday pounds, give up soda, dessert, or alcohol.

     Anger or frustration, release into the wing, again and again.

     Worried over a situation or outcome that is out of your control, let it go, release it from your mind, again and again.

RECEIVE, finding gratitude in your life; simple pleasures:

     To be refreshed by a morning walk or an evening saunter.

     To be thrilled by the stars at night.

     To be elated over a bird's nest or wildflower in the spring.

Living in New England at the start of a new season, I ask my students what they would like to release and receive at this time of change; so we revisit this question throughout the year as part of our Seasonal Living.

Seasonal living is not a new concept, but practiced for years. We got up when it was light, went to bed when it's dark, ate local produce when it was in season. However, today we can shop, eat, and bank in front of our computers and electric light continues through the night disrupting balanced energy flowing through the body that equates to perfect health.

Winter is officially started on the 21st of December, but everyone is too busy with the holidays to make a serious start to living winter energy, the capacity to withdraw, repair, and rejuvenate.

Good nutrition is an essential part of our winter routine because the body needs good, hearty, hot foods in order to keep itself warm, the wrost time to diet and it's the time that magazines and media promote.

In short, eat properly by simmering stews, warming soups, roasted root vegetables and warm drinks such as green, ginger, or jasmine tea. Add basil and black pepper to increase the warming effect, or the use of pungent spices such as garlic, ginger and cloves. Hot water is good as it flushes the kidneys and cleanses the system.

Embrace the season, find beauty in day, sun on your face, cool breeze in the air... to be alive.

By Carol Dearborn, RYT

To read the entire blog post, go to http://www.caregiving.com/2017/01/in-with-the-new/

No Resolutions for Me?

How can it be New Year's again? I swear, I didn't have time to follow my New Year's resolutions last year because the year just went by too quickly. Oddly enough, I seem to have had enough time to forget what they were. This year, I'm not even going to try. Nope. No resolutions for me. I'm just going to keep on as I've been keeping on all this year. Why make all sorts of plans and promises I can't keep? 

Ow.

That's not going to work, you know.

I looked up from the floor, hands over my ears. There, sitting calmly on my computer as if nothing had happened, was Mo, the slightly obnoxious opinion fairy who occasionally drops in to tell me what I'm doing wrong. Just what I needed. Life has been complicated enough without a blasted meddling fairy bossing me around. 

Mo: Obnoxious? Meddling fairy? MEDDLING FAIRY? I've come all this way, just to see you and THIS is how you welcome me? Do you know how far I've come? Do you know how dangerous it is to travel by bird in the middle of winter? Do you? It would have been nice to get a "Hi Mo, it's good to see you" or even "How about a cup of tea?" No, all I get is MEDDLING FAIRY." 

Me: Sorry Mo. It's been a hard week, but c'mon, you know how my body reacts to loud noises? What was that, a ...gong? (Mo held up a tiny gong, not more than a half inch in diameter) THAT’S what made all that noise? C’mon, Mo, you know how my body reacts to sudden noises. If I’d known you were coming, you would have gotten a better greeting… maybe. Put the gong away and I’ll get up and get some tea.

I slowly pushed myself up on to my hands and knees as several muscle groups simultaneously decided to lodge a complaint. Groaning, I stood up and went in to put the kettle on for tea. When I brought it out, Mo was standing by the computer screen, reading what I had written. I handed her a small teacup.

Me: So why are you here, anyway? I thought you had moved to Chicago.

Mo: I wanted to check in with my favorite client.. and it's a good thing I did, too. What's all this about not making resolutions?

Me: Every year I make resolutions, break them by the end of January, and by February I've forgotten what they were. Why make the effort?

Mo: Let's see... I'll just go back to a few other New Year postings.. for several years you've had the goal of decluttering. You've also resolved to continue laughing and learning and trying to see the best in people...and... to forgive yourself as easily as you forgive others. You've resolved to learn how to balance your time and energies. And one of your goals has always been to exercise more... and dance. Are you doing all this?

Me: Well, sort of. I've done a lot of decluttering and, well, for the rest of it, I keep trying. 

Mo: So, the New Year is when you consciously THINK about how you're doing with these goals and remind yourself to keep trying. Which is why you need New Year's resolutions. Really. It's a good thing I came back. I don't know how you've managed this long without me.

Me: I've done just fine. But I'm glad you're back. I missed you. Why did you come back to Colorado... really.

Mo: I enjoyed Chicago, but when you're best friends are a ghost and an old snapping turtle, and your landlord is a scruffy sparrow who thinks he can boss you around, you get a little lonely for the good old days of sitting around with a friend, drinking tea and eating chocolates.

Me: Ah ha! You've come back for the truffles! Okay. You deserve one or two. I'm sorry I was so grumpy when you first came. It is a long ways to come and it's cold out there. It must have been freezing flying by bird. How long did it take?

Mo: Ah... um... about 3 hours. The bird was an airplane.

Me: And all that talk was just to make me feel guilty? Thanks a lot. By the way, what are your resolutions for the New Year?

Mo: To make sure you remember yours... and to eat more chocolate.

Me: Okay by me, you just have to promise one thing. 

Mo: Which is?

Me: Some day, tell me about your adventures in Chicago.

Mo: You got it! Cheers! 

Happy New Year!

Harmony and Dissonance

"Wolcum be ye that are here. Wolcum alle and make good cheer, Wolcum alle another yere, Wolcum Yole, Wolcum!"

The music which always gets me in the Christmas spirit is "A Ceremony of Carols" by Benjamin Britten. It might seem an odd choice; though beautiful, it's not exactly the light, cheery music we hear in the stores or on the radio. Part of the reason it speaks to me is because our choir performed this work when I was a senior in high school. The concert came during a snow storm right before Christmas break. A professional harpist performed with us. Walking out of the school in the falling snow after the concert, the music was still very much alive in my whole being. It was magical!

Britten's use of dissonance, varying rhythms, overlapping voices, and key changes make this a challenging work for a choir. From the reverent procession in Latin to the bright "Wolcum Yole!" in middle English, to the gentle lullabies then a plunge into the dark with "This Little Babe" , to the song of praise in "Spring Carol" to the energy and urgency of "Deo Gracias", we are carried on powerful waves of emotion and beauty through these carols. It's exhausting.

This is not surprising when we learn Benjamin Britten wrote the music for "A Ceremony of Carols" while on board ship, a month long voyage crossing the Atlantic from North America to England in March of 1942. He was with his partner, Peter Pears, a well known tenor. They were personal as well as professional partners. This was also right in the middle of World War II and the sea wasn't the safest place to be, nor was England as bombs were falling on their cities. 

For the celebration of Christmas, peace on earth, goodwill toward men, Britten included both the harmony and dissonance which was the world around him. This is just right. Jesus wasn't born into a world of peace and goodwill, but into this struggling, imperfect one.

This little babe so few days old has come to rifle Satan's fold...

Dissonance occurs in music when two notes which are discordant are sung or played at the same time; a major or minor 2nd is the easiest example. It's the sound of tension and our minds want to resolve the tension by coming back to the harmony of a 3rd interval. The dissonance itself is not pleasant to listen to and only can achieve beauty by the context and harmony which is around it. 

Listen closely to the music and we can hear the dissonance in Benjamin Britten's world. We hear the joy as well, but the tension is never far away. It is interesting he was inspired by poems of Robert Southwell, a Catholic priest who was executed in England in 1595 for treason; being a Catholic priest in England for more than 40 days was a crime punished by death in those days. Perhaps Britten, being a gay man in the 1940's, understood Fr. Southwell's devotion and the danger he had to accept.

There's dissonance in our world again. Of course, there always is, but right now there seems to be more than ever. We don't know what to expect, but we dare not ignore what is happening, even if listening to the news sounds like fingernails on a chalkboard. We have elected a president who has publicly made fun of disabled people, constantly and consistently puts women down, is backed by the KKK and Russia, prefers to communicate through Twitter, isn't interested in hearing security reports, among many other seriously concerning behaviors. We dare not ignore the racist comments made by the man who has been his closest adviser. We dare not ignore it when people feel empowered to harass others because of the color of their skin, their nationality, religion, or sexual/gender identity. 

We must dare to stand up to this new administration and refuse to allow a Muslim registry. We must encourage our state and local leaders to refuse to be a part of this.

There are people organizing. We don't need to do this alone. It's not one hero we need, but an entire chorus of voices. To be one voice in a chorus is to (to quote a friend) feel very small in a very big way. It's the acknowledgement that we are, and need to be, a community.

We need courage, but we also need joy. The darkest poem in this work ends with:

"If thou wilt foil thy foes with joy, then flit not from this heavenly boy"

The way a child expresses reverence is through joy. There is no other way. Whether we are expressing our reverence to God, to the earth, our home, to our families, or to life itself, to express this through joy is to give a crushing blow to those who want us to live in fear. These carols, even when the music is tense and the words speak of struggle, are filled with joy. Think of the struggle which was going on at the time Fr. Southwell wrote the poem and when Benjamin Britten wrote the music. At the end, the "Deo Gracias" is an urgent call to be thankful, but with a wonderful twist: 

"Adam lay ibounden, bounden in a bond; four thousand winter thought he not to long.

And all was for an appil, an appil that he tok, as clerkes finden written in their book.

Ne had the appil take ben, the appil take ben, 

Ne hadde never our lady a ben hevene quene.

Blessed be the time that appil take was, therefore we moun singen,

Deo Gracias!"

How thankful we should be that we are human... imperfect as we are. To stand with our fellow human beings, especially those whom our society has repeatedly tried to squash (marginalize seems much to sanitary a word) and those who need our support, and helping each other to find joy, this I believe is the work we are called to do.

Deo Gracias!

Here are the carols, sung by the Copenhagen Boys' Choir and conducted by Benjamin Britten. Each song is relatively short, the entire work is about 20 minutes. Thank you to the Internet Archive for the recording and lyrics to Benjamin Britten's beautiful music and for making this available to share with others. 

A Simple Tree

We decided to get a small Christmas tree this year, just to keep things simple. Chris would prefer to have a small tree anyway, but most years, I intervene. This year we want to focus on family and making dinner on Christmas eve and preparing for guests on Christmas day. A small tree leaves more room for guests to be comfortable in our small house. I got it. 

Off to our regular Christmas tree lot at Wardle's Feed in Wheat Ridge. They were down to 9 trees, 4 of which were large, full, and over $50; the rest were sort of Charlie Brown trees without the charm. Back in the truck and off to another lot. This one had a lot of trees. At 25 degrees and windy, we made our choice quickly. It's a small tree, about 5' tall, but nice and full.

Back home, we got out the tree stand only to find out it is made to hold trees which are at least 5 inches in diameter. Ours is... maybe 4 inches. Close doesn't work with tree stands. I did a quick search on google for tree stands for small trees. It came up with a few available in our area. The closest one was at a Walmart. We do not shop Walmart.

I went to Walmart. To get to the particular Walmart which had this item in stock, I had to pass two other Walmart stores... on Wadsworth Blvd, which was going at a snail's pace with bumper to bumper traffic and road work. But I got there. They had two stands, one for larger trees and one for smaller trees. Unfortunately, the one for smaller trees was made for those at least 5 inches in diameter. 

On the bright side, I didn't spend any money at Walmart. This was good because I realized I had also left my purse at home. I spent the drive home (also on Wadsworth) thinking of all the possible ways to hold the tree in place in the larger stand. In fact, I let my inner Mattheus (my soon to be 7 year old inventor grandson) imagination go and, by the time I got home, had a complicated plan involving a piece of PVC pipe, more nuts and bolts, and power tools. 

Chris looked at me and said, "That's way too complicated. How about putting some gravel in the stand to see if that helps."

Sigh. He was right, of course, and I shushed my inner inventor who was sputtering, "but, but, but...". We put gravel in. Amazing! The tree stayed upright! Right up until I put the skirt around the base. We decided to sleep on it and try Plan B in the morning. 

Next morning: Maybe we needed some larger rocks to wedge it in? We siphoned off the water. We went out into the snow and dug around where we knew we had left some larger rocks. Bennie, our chiweenie, bravely followed me all the way to the garage before whimpering and turning back. It's 7 degrees out today and we have a foot of snow.

Digging out rocks in the snow ended up being worth the effort. The tree is now standing, as straight and sturdy as we're going to get it. We'd better be careful to balance the weight of the ornaments as we decorate the tree. Chris mentioned the possibility of guy wires. 

As soon as the tree was relatively stable, it seemed to me it would look much better if we had it on a small, low table. Chris suggested this would have been a fine idea IF we had done it before putting in all the stones, gravel, and water. He's right. Moving it now would be too complicated.

And this year we're keeping it simple

Make your house fair

...as you are able. I'm glad the song continues with this line. I'm still in the process of simplifying and clearing out everything I don't use, can't use anymore, or just simply don't need. It feels so good to do this, I will have to be careful so I don't give away things I need. Simplifying can become addicting. 

The challenging part of taking on a challenge like simplifying my life while managing a challenging health disorder is the challenge of having enough energy to do something more challenging than just simply making it through the day. Then there's the challenge of trying to pace myself so I can do challenging things without crashing and without getting totally pissed off because I can't do as many things as I used to do and everything I do is just a little more challenging than it used to be.

Today is the first Sunday of Advent. I haven't even finished writing down my Thanksgiving thoughts. 

When our children were younger, I would have made an advent calendar. I would have stayed up half the night to get it all done so it was ready in the morning. We would have also made our wreath, which was only difficult because we didn't get our tree so early and had to scramble for greens. These last few years, I've forgotten about the wreath until it came time to light the candle at dinner. Tonight, I hastily found a votive candle and holder so we could celebrate the beginning of Advent. We lit the candle, but forgot to say the verse. 

Though my spiritual beliefs have gone on a wild roller coaster ride over the last ten years or so, the traditions are still important to me. The days are getting shorter. It's time to be more introspective. Time to acknowledge the cycles of the earth and what they can teach us. The first light of Advent is the light of the stones, stones that live in seashells and crystals and bones. It's time to be thankfully aware of the basics: the ground we stand on, the bones which hold up our physical bodies, the foundation and bricks that hold up our house. 

Another basic part of our foundation we can find in a classic Advent hymn, written in 1928 by Eleanor Farjeon: 

"People look east, the time is near for the crowning of the year! Make your house fair as you are able, trim the hearth and set the table. People look east and sing today, love the guest is on its way."

Part of our foundation as human beings are other human beings. Certainly our family is our real foundation, hopefully a strong one. But the song tells us to look out from our homes. Get your house ready and make sure you have food to share. Who is our guest? As a Catholic school student when I was very young, I learned the guest is Jesus, of course. As a young adult I learned the only way to see Jesus was to see his divine light in every person.

Okay, so this is enough of a challenge for the first week. Nothing too difficult. Just get my house cleaned and tidied, make sure to have enough food on hand so if any of you decide to stop by, I can fix you a cup of tea and a snack, and make sure I am centered enough to see the divine light in everyone I meet. 

Back to tidying... as a former Catholic school kid, I have a few interesting challenges when it comes to cleaning. Even after all these years, I still have prayer books, prayer cards, an old scapular, some broken rosaries and, what I think belonged to my uncle, a wooden crucifix that is broken with Jesus' metal body tied on with string. Throwing anything such as these in the trash or even recycling them makes my inner Catholic school kid shudder. We learned (really) that if we did anything to harm the Jesus statue, we would be harming Jesus. I'm thinking of putting all these things in a basket and leaving them at the church door.

I'm sure those old superstitious beliefs are not taught to Catholic children anymore, so I don't feel bad about clearing my house and my psyche of such oddments. In my house and in my beliefs, it's time to get back to basics. It's all I have energy for, anyway.

The first light of Advent is the light of the stones.