Parkie Spotting

“There's one!”

“How can you tell?”

“See... no arm swing...and he's shuffling.”

“Okay, how about that one over there?”

“Hmm... not sure. We'll have to move in closer.”

We're Parkie spotting at a local shopping mall. It's a new sport and today it's a close race to see which team can correctly identify the highest number of people with Parkinson's disease. So far, Team #1, the Shakers and Bakers, a group of chefs who all have PD and are known for their creative overuse of spices, have three people on their list:

  1. a customer who stopped in the doorway of the store and couldn't seem to pick up his feet

  2. an older man shuffling his feet and not swinging his arms as he walked by

  3. a clerk who didn't blink for a full 4 minutes, even when she was startled

Didn't blink? That was a good call and should score well for the Shakers and Bakers. That's right folks, people with PD often don't blink much. It means the “non blinking Senator” in the youtube videos might NOT actually be an alien.

While we're waiting to check in with Team #2, the Dopamine Dozen, we'll take a few minutes to discuss the origin of the sport. In 1987, a group of friends met at a local fern bar for lunch. One of their group arrived late, looked slightly disheveled, and was slurring his words. The hostess refused to seat him, saying he was obviously drunk. Of course, he wasn't drunk. He had PD. The incident was resolved with a minimum of yelling, swearing, and threatening, and the group spent the next hour discussing how many supposedly drunk people actually had Parkinson's.

After this, they were always on the lookout for people who shuffled their feet, spoke quietly, didn't blink, didn't happen to notice that their dog had been sprayed by a skunk, or appeared to be drunk. Each time they saw someone, they were smile and nod and say, “Probably Parkinson's”.

In 1990, their activities came to the attention of Really Weird Sports production company, producer of Who can Snore the Loudest and Diaper Change Champions, among others, and they promptly stole the idea and developed it into a competition. Today's teams observe a controlled group of everyday people mixed in with an unnamed number of PWPs (People With Parkinson's) who are released into the shopping mall at the beginning of round one. The teams receive points for correctly spotting the Parkies.

The second round will be celebrity Parkie spotting. This one is more difficult as not all the celebrity PWPs have come out of the closet. Points are awarded according to how well each team presents their observations and argues their case. Due to confidentiality laws, the results are considered pure speculation and are not to be taken for fact.

The most recent possible celebrity Parkie sighting is Former President Bill Clinton. With a noticeable tremor in his left hand, and a gravely voice, many are quietly smiling and nodding their heads, indicating they are privately convinced he is one of them. The former president is denying this diagnosis, saying, while he does have a tremor, it is definitely not Parkinson's disease. This led one competitor to remark, “It's not that we don't believe Mr. Clinton, we're just wondering whether this is an I-didn't-inhale-that-joint type of definitely-not-Parkinson's-disease.”

Back to today's competition: Round one is over and it looks like the Dopamine Dozen has a longer list then the Shakers and Bakers. The judges are going through each spotting and awarding points. The Dopamine Dozen look confident, but what's this? Two of their spottings have been crossed off the list. Seems those people really were drunk. The Bakers and Shakers fans are going crazy.

It's going to be close.

 

 

 

 

The Tattoo I'll get Someday

When I went to pick up my mom for a doctor's appointment the other day, there was a fire truck and ambulance in front of the building. It's not so unusual at a facility for the elderly, but it's always a jolt. Who had become ill or fallen? One of my parents? Probably not, since no one had tried to call me, but who? I've started getting to know some of the residents enough to worry about them.

It was impossible not to see what was going on. A resident (someone I didn't know) had collapsed in the lobby right in front of the nurse's desk. She was on the floor and bare from the waist up. She had received CPR and was now on oxygen. The paramedics were getting ready to transfer her to the stretcher and ambulance. 

When I am old, if I live long enough to be old, I want a tattoo on my chest that says DO NOT RESUSCITATE in big bold letters. I felt so sorry for this woman who did not have a DNR order, or maybe she did and it hadn't gotten in the files or they couldn't find it. If the paramedics don't have the DNR order, they are obligated to try and resuscitate. As they left, I could hear the woman moaning and crying in pain. CPR can be very hard on old brittle bones.

I could feel for her. Just when she was finally. nicely and peacefully dead, someone had to come and ruin everything. When one is in their mid 80's to mid 90's, death isn't so scary. It's more like a nice long nap after a very busy day. She didn't sound too happy to be woken up.

Signing a Do Not Resuscitate order is an individual and/or family decision and I understand these wishes need to be respected. I just want to make sure, when I'm old, that my wishes are known. 

Don't get me wrong. I'm not in a hurry now and I won't be getting the tattoo for a long time. If I choke on something, call the paramedics! If I have a stroke or heart attack, call the paramedics!

When I'm 80, let me go.

Drink up your veggies!

Some of my journal articles apply to anyone. Most will be appreciated more by people with Parkinson's disease or other chronic disorders. That's okay, because there actually is a purpose to these articles besides giving me the opportunity to write and find something fun and funny in this journey. This is one of those times when I'm writing specifically to people with PD, with a chronic illness, someone who cares for a person with a chronic disorder, and anyone who occasionally finds it a challenge to eat, swallow, and breathe.

I've had the Heimlich maneuver done on me five times. Four of those times, it was my husband who saved my life. The first time, approximately 15 years ago, it was one of my teacher colleagues and, I think he may have stopped shaking by now. The experience was more traumatic for him than it was for me. My husband has more experience and, frankly, he really doesn't want to do it again. (...though I trust he will, if necessary.)

In the interest of making life easier for my spouse and living to a ripe old age without resorting to eating nothing but applesauce, yogurt, and ice cream, I have worked on these guidelines for healthy eating. They work for me (so far) and may be helpful for others, but may not work for everyone. That's my disclaimer - one of those legal things I have to say.

The foods which are most likely to cause me to choke surprised me. They include:  lettuce, green beans, broccoli, bread, celery, salad dressing (vinegar), meat, sugar, and water.  This poses a dilemma. How do I get the required green veggies in my diet when I'm terrified they may kill me? I could do as my parents have done and substitute ice cream for green veggies. It isn't the healthiest, but it's not generally lethal. How do I drink enough water? What do I do?

Here's my plan:

1. If I have a salad, it's got to be naked. No dressing. Combining lettuce and vinegar is too much for me to handle. 

2. Watch my timing. If I eat a salad or meat at lunch, I'm much less likely to have any problems. By dinner, however, I'm tired and have to be ultra careful.

3. Juice fresh veggies! Lots of fresh veggies. Add plenty of greens until it tastes like freshly mowed grass and I start to moo. Add some carrots so it doesn't look too green. Add an apple for a little sweetness. 

4. Save the pulp. There's a lot of good vitamins and fiber in that pulp. Why throw it away? I put it in soups, chili, muffins, and various sauces. 

5. With PD, we often crave sugar, especially when our dopamine levels start to drop. I have been battling this one for years. So far, I've had limited success as my battle plan goes something like this: "Please don't bring any sugary stuff in the house. You know I'm not supposed to eat it. If it's here, I'll eat it...and, by the way, don't forget the chocolate chips.'

6. Eat slowly, peacefully, chew well. Don't eat when I'm angry with someone. Don't try to talk and eat at the same time.

7. Put my chin down when I swallow. This advice came from a speech therapist. It really helps. 

8. Learn how to do the Heimlich maneuver on yourself... OR.. don't eat alone. If I go out to eat with someone, I make sure they know the Heimlich maneuver. 

9. Keep applesauce, yogurt, and ice cream on hand, just in case you can't eat anything else. 

10. Keep this website handy:  Bea Arthur and Unicorns teach you the Heimlich maneuver

At times like these, I'm grateful I'm older and have been married a long time. I wouldn't want to be dating now. It wouldn't be cool to have to explain all this to my date. I'd probably frighten him away before we even got to a restaurant.

If anyone else has suggestions as to what has worked for them, please feel free to add them in the comments.

 

 

 

 

Look Both Ways

All good things come to those who wait, except when time and tide wait for no one. The best things in life are free, but there is no such thing as a free lunch. Silence is golden, but the squeaky wheel gets the grease. You are never too old to learn, but you can't teach an old dog new tricks.

 I've been looking through wise old sayings for some inspiration for my New Year's resolutions. They aren't much help. Neither are the motivational quotes I see on Facebook every day. They are just way too clever... and contradictory. No matter what you believe, there's a motivational quote to back you up. 

We moms are good at contradictions and oxymorons. We come up with some really creative things to say, especially when we're functioning on less than 3 hours of sleep. It was one of those days when I saw a student spewing bread crumbs as he was talking to a friend, and I hollered, "DON'T EAT WITH FOOD IN YOUR MOUTH!" I know it was a profound thing to say because 20 years later, he still remembers it. 

New Year's is a good time to look back as well as look forward. It's important. Especially as parents, grandparents, and caregivers of all sorts, we are often so busy living in our day to day moments, putting out brush fires and making sure everyone is fed, we don't take the time to actually deal with stuff that happens. If we blithely say we're letting go of the past and living in the present, without figuring out what the past stuff was teaching us, we're not really letting go of anything. We're just pretending it's not there, but it's still attached by an elastic band that gets tighter and tighter until we either address it or it snaps and hits us on the side of the head. 

So, looking back, my last year has been filled with contradictions. I have, by necessity, turned inward toward family, taking care of our grandchildren regularly and my parents. At the same time, my trips to Washington DC for PCORI meant that I went farther out in the world and really stretched my intellectual abilities. Whether I'm asked to go again or not, I'm glad I had this opportunity.

Our lives have been incredibly busy at times and then, there will be days when I don't really have enough to do. Planning is impossible because one phone call inevitably means a free day is no longer free. I've had time for quiet, time for reflection, time for reading. I haven't had the energy for crafts, so what did get done was all bonus. 

I've been forced to slow down this year, except when I'm running all over town and making phone calls all day.  I have trouble slowing down willingly, so this has been so good for me. I've been able to be more present to all the people in my family and I've been forced to prioritize and decide what is most important in my life. Being Grandma is the best!

Going forward, I will still be watching our grandkids and caring for my parents. I will still be forced to go slow. I'm okay with this, it feels right. So much has happened in the last 9 whirlwind years since I was diagnosed with Parkinson's. Now, I feel I've finally had a chance to really process all those changes:  we're grandparents now, we're both retired, we're starting to downsize our stuff and our schedule. Friends have come and gone in our lives and we've had to say our final goodbyes to so many friends and family members. This has been difficult and painful, but I've also realized how lucky we are to have known so many beautiful people and how privileged we are to witness the start of their next journey - wherever and however their journey continues.

My new year's resolution? To keep putting one foot in front of the other, continue learning, laughing, caring, believing in what is good in the world, and forgiving - myself and others - after all, we're all struggling and doing the best we can, and I'll do my best to be mindful of everyone who comes into my life. 

Oh yeah, and I'll also continue dancing.  The world needs more dancing.

Holiday Blog Party!

Happy happy holidays to all my friends at caregiving.com and everyone who is caring for a family member or friend! Please join in, if you'd like, and let us know who you are caring for and how you are doing. I write back. Being a caregiver isn't easy and being both a patient and a caregiver has some unique challenges. I've known a number of people with Parkinson's disease who have been full time caregivers. 

Enough from me. This one is for all of you! Cheers!

 

Mighty Masked Mom

“Why do you wear a mask and hood?"
"I think everybody will in the near future," was the man in black's reply. "They're terribly comfortable.”
William Goldman, The Princess Bride

"Well," my neurologist had just watched me walk up and down the hall several times, "it's been over two years since I've seen you. You've got more dystonic movements in your walking and posture, you don't blink very often, and you're masking more." 

Masking. Okay, that explains why people have been looking at me and asking me if I'm alright, or telling me I look pensive. Walking down the street, a stranger stopped me and told me to smile. Dogs look at me and sit... without being told. While I don't mind being thoughtful and I don't have the need to look chipper all the time, it would be nice if people could actually tell how I'm feeling by looking at my face.

In normal, non Parkinson's folks (mostly women), the term du jour is "resting bitch face". The definition, according to The Urban Dictionary is: a phenomenon in which the resting face lacks animation and appears to look bitchy at all times, thus leading people to believe a person must be upset, a snob, or a bitch. Thanks Urban Dictionary. Now I'm really feeling depressed.

After asking my doc about my crashing episodes and describing them to her, she briefly considered the possibility I might be going through "dopamine crashes", but then decided no, it's just life with a Parkinson's brain. "Your body just reacts differently than someone with a non-Parkinson's brain," she explained. "You're just more frail." 

Frail? Damn.

When I got home, I went to the thesaurus. At least, maybe I could find a different, nicer sounding word.  I was not thrilled. Synonyms of frail included:  feeble, decrepit, brittle, flimsy, sickly. My daughter suggested delicate. Right. The first time she calls me delicate, I'll call her a princess. However... when I looked up the synonyms for delicate, that was a different story. I could live with some of these:  rare, exquisite, elegant, gentle, subtle. Not bad.

Later that day, I had to stop by the cable company and sort out a few differences in opinion on our bill. After getting the spiel, the clerk looked at me. I looked back at her and asked what they would do for us. I didn't blink. Five minutes later, she had knocked $30 off my monthly bill. Maybe this face of mine has some advantages. 

Words - names and labels make a difference. Frail? Hah! Okay, okay, if I get overtired, I run the risk of getting very ill and being in bed for several days. However, despite this, I'm still the primary caregiver for my elderly parents and I still help watch our grandchildren at least once a week. Frail doesn't fit. I am not frail and I certainly do not have a resting bitch face. 

I am the Rare and Mighty Masked Mom and I have amazing superpowers.

Granted, my superpowers are limited to winning staring contests and making dogs and the occasional cable clerk behave, they're still superpowers.

 

"Look, I don't mean to be rude, but this is not as easy as it looks, so I'd appreciate it if you wouldn't distract me."    

~ Westley, the man in black, The Princess Bride

 

Chicken Flambé

We had the best chicken dinner tonight. It turned out just right - a little toasty crispy on the outside and perfectly tender on the inside, sauce with apricot preserves, a little onion, and a dusting of tarragon. Couldn't have been better if I'd tried.

And that's the problem. There is no way I can try and replicate this dish. The flambé, you see, was not intentional. Methinks the oil just got too hot and *poof* suddenly it was flambéing straight up toward the ceiling. Several things went through my brain simultaneously. One was "don't put out the fire with water". Another was, "turn off the heat and it'll burn itself out". And the third was "holy shit".

I still cook dinner most of the time, though I get lazy and do easy meals as much as possible. It's not really anything to do with my Parkinson's - though Chris still gets nervous when I use knives in the kitchen. It's mostly because I'm trying to be a caregiver and care receiver at the same time and, since there aren't enough hours in the day to do both, the caregiver side gets most of the attention. And since there aren't enough hours in the day to do everything and feel rested and relatively sane, I tend to go on automatic and don't always think everything through or watch what I'm doing closely enough. 

There's something comforting about this time in my life. It's incredibly stressful at times, such as when the nurse and paramedic suggest Mom needs to be checked out in the ER and Mom says no, and they look at me and say, "You've got POA? It's your call." It's both exhilarating and exhausting to have our three young grandchildren for a day, but when our granddaughter hugs my legs and looks up at me and says, "I want you to stay with us all the time", I go mushy and can't think of a better way to spend my day.

We went to a party last summer and the first 5 women we talked to mentioned how they were taking care of at least one parent. Then they told us all about their grandchildren and showed us photos on their cellphones. I realized suddenly that we were all the same. We were all about the same age and, despite having dressed up for a party, there was a certain look about us as if to say, "I don't care if my hair isn't perfect or my shirt isn't ironed and my contribution to the potluck came in a bag from Sprouts. I'm here." 

There are lots of us caregivers and grandmas in the world. We're all tired, stressed, overworked, and both loving and hating it at the same time. It's a great equalizer. It's been 8 years since my diagnosis of Parkinson's disease and I haven't felt this normal for at least a decade. Get any group of us grandmas together and you'll hear us slurring our words and see us occasionally walking into walls. Sometimes we come out with phrases which make it painfully obvious we spend a lot of time with preschoolers and elderly folks. Of course, I was walking into walls before I was a grandma and caregiver, but now I don't even have to blame it on my Parkinson's. 

And I'm not going to blame my Parkinson's or anything else for the chicken flambé. I'm opting for a defense I learned from my kindergarten students a long time ago, when they would jump off a swing and land in what looked to be a very painful position. They'd just pick themselves up, glare at me, and say, "I meant to do that."

It was a really good chicken dinner. Obviously, I meant to do that.

Believe it or not, I'm an angel

It was just over a year ago when I first wrote about Dancing with Angels.  If you don't remember and don't want to take the time to read the first article, just know it isn't at all like dancing with wolves. Sometimes it can be a little like dancing with stars. There's a book called "Dancing with Cats" and we're not that. There's also a video called, "Dancing with Drones", but you'll have to look it up on your own. 

Angels are the experienced dancers who help out the new class members in square dancing. Our job is simply to be in the right place at the right time - nothing more. We don't teach or give advice.

Just being there. 

A year ago, I was very much in need of someone just being there. My parents had just moved into assisted living - not happily - and I was running back and forth, trying to take care of all the details, clear out the house, schedule doctor's visits, and deal with all the emotions that go along with this huge life change.

I was also trying to manage my own challenges with Parkinson's. This became especially difficult as my caregiving duties made it impossible to continue with my yoga class and the Dance for Parkinson's class. I also desperately needed a regular time away from ...everything. My friend, Linda's suggestion to try square dancing with the Rainbeau's, was perfect.

For my Parkinson's, square dancing gives me an evening of aerobic exercise. I get to practice my balance skills. The moment came a few months ago when I realized I wasn't getting dizzy when I did spins and twirls. That's huge. Okay, sometimes I still get dizzy, but not all the time like I used to. I get to practice remembering which is right and which is left. Don't ask me why, but this skill left with my PD diagnosis. 

It's also a deluxe cognitive workout. Because we don't know what's coming next, we having to be listening and prepared to move right into the next call. We have to use our thinking a lot, but not in the usual way. It's a thinking that has to move immediately to our limbs - our doing. It's always easier to do this if it goes by way of our hearts. We have fun! The Rainbeaus have big hearts. 

As a teacher, I knew that the best lessons were those which included the head, heart, and hands - thinking, feeling, and willing (doing). When I am dancing, I'm not thinking about any of the stressful stuff in my life. There were days when I first started, when I was emotionally so tired by the time I arrived at class, I was close to tears. I always went home laughing. My life has calmed down considerably since then, but it's a lesson I will never forget.

Last week, we danced with only a few short breaks. By 8:30, I was making lots of mistakes. Here I was, supposedly helping out and, when I tried to engage my brain, I found it had already gone to bed, pulled up the covers, and was turning out the light. My PD stuff kicked in and I was doing some involuntary pliés (or dystonic spasms, as my doc calls them). I was glad there were a few other angels around me then.  

Just being there.

(Thanks to animatedimages.org for the free use of these angels)

ROCKY MOUNTAIN RAINBEAUS