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

Research from the Patient Perspective

As a patient, what would you like to see as a research study? 

This isn't an easy question to answer because most of us don't really have much of an idea what goes on in research studies. Even when we are participants in clinical research, patients often never hear what the results are and, according to the many experts I heard speak at the PCORI Annual Meeting, it can take years before research results have any effect on clinical practice. Results are published in medical journals which are not easily accessible by patients, either because of the cost or because the technical language makes it impossible to understand.

PCORI or the Patient Centered Outcomes Research Institute is trying to change this. It isn't an easy task as it is asking for a radical change in how scientists and clinicians look at research. They are insisting that researchers include patients in every aspect of this process, even - and perhaps especially - in deciding what is important to study. What outcomes matter to patients?

On the last day of the meeting, I attended a session titled, "Applying the Patient Experience to the Research Process". This was a learning lab session and a process in how to figure out how we can answer the first question. As a patient reviewer for PCORI, it also helped me to understand better how I can approach reading and critiquing funding applications.

The presenters, Suzanne Schrandt JD, Deputy Director of Patient Engagement at PCORI, Jaye Bea Smalley MPA, and Lisa Stewart MA, Engagement Officers for PCORI, first assured us that we, as patients, are experts. We have been living with chronic health challenges and know better than anyone what changes we would like to see happen. Then, they asked us to reflect on those experiences we've had with illness or injury which have been very powerful, both the good and the bad.

We then chose one of those experiences and tried to formulate a question around it. What are the key points we want to make? What are the details you want to get across? How can we create a narrative to illustrate why we feel this is important. 

Another presenter from earlier in the week, Chip Heath, talked about how to communicate in a way people will listen and understand. The best example was about nutrition. I loved this one! He showed us an educational slide talking about the amount of saturated fat in whole milk compared to the recommended daily allowance. It was okay, but it was really just numbers. Then he showed us another slide with simple graphics showing us that the amount of saturated fat in a glass of whole milk is equal to the amount of saturated fat in 5 pieces of bacon. 

The moral of this story? If you're going to have saturated fat, would you rather have a glass of milk or 5 pieces of bacon?  This is something people will understand and remember. (Not that anyone is suggesting bacon is healthy. There's a few other things to take into account.)

So, back to the first question, what would I want to see researched? 

One of the most challenges aspects of managing my Parkinson's disease has been medication. How do we find a balance between managing our health and avoiding the inevitable issues of the less desirable effects of drugs? Would it be possible to have a comparative study which would look at patients who are having more symptoms or more off times and divide them into groups: one group of patients would have their medication increased, another group would start an exercise regimen instead of the increasing the meds. Another group could start a conscious, healthy diet (study determined) instead of the increase. Another group could do both the exercising and the diet instead of increasing meds. 

The ability to manage symptoms without increasing medications would be a huge positive outcome as far as I'm concerned. 

I have no idea how feasible a study like this would be, especially when it comes to scientific merit and protocol, but it's worth putting these ideas out there. The wonderful, awesome, exciting thing is, now someone will listen! PCORI is interested in our ideas. For more information on submitting ideas, go to PCORI's website - Suggest a Patient Centered Research Question. They'll even help you learn how to do this. 

PCORI doesn't just talk about patient engagement. The inclusion of patients in every step of the research project is required for receiving funding. PCORI includes patients as well, in every part of their work. As a patient reviewer, I know my voice is heard and considered as important as the voices of the scientists and clinicians. They respect us as experts.

They also made sure to include patients in their Annual Meeting. I am so glad I was able to go and am grateful for the scholarship I received. It was educational, exciting, and reassuring to see the direction this field is going. It was amazing to hear speakers talking about projects where this is already happening. The organizers kept the meeting moving and lively. They took good care of us.

We even had bacon for breakfast. 

The PCORI Experience - The Key

I arrived home this morning from attending the first Annual Meeting of PCORI - Patient Centered Outcomes Research Institute. Over the next week or so, I'll be posting some short articles about this experience. They will probably be sort of random, working like my mind and memory work as I try and process all the information I received. 

Here is the first:

THE KEY

It hangs from my coin purse because I don't take my keys with me when I travel. The plain silver key has not been cut and doesn't fit any lock. It's a reminder of all the people who do not have keys. It's a reminder of my obligation to speak for those who do not have keys.

We were listening to a panel on the topic of Engagement of Patients and Other Stakeholders in Research. There were three groups represented,but Loretta Jones will be the one I don't forget. She and Dr. Clete Kushida spoke about their work with Healthy African American Families. I encourage you to look at their website. Loretta recently received the Honorable Diane E. Watson Community Service Award from the United Nations for her work addressing disparities in health care.

Which brings us back to the key. While Dr. Kushida and Loretta were speaking, we were handed keys. Loretta asked us about our own keys. What do they open? House, car, safety deposit box, bicycle lock, a gym locker; these were a few of the answers given. Keys represent access and assets. A house key means we have a place to live, an anchor. A car key or bicycle lock key means we have the ability to easily move out of our area and see more of the world.

There are other keys which are not visible, but are important: access to health care, access to transportation, access to education. This list is just a beginning. Who are the people without keys? The homeless, the uninsured and underinsured, those who don't have transportation to a doctor's visit, those who don't have access to healthy food, those who do not have an advocate.

At the PCORI Annual Meeting, there were scientists, clinicians, nurses, social workers, health insurance representatives, lawyers, patients, patient caregivers, patient advocates, and more. Who, among all these groups, is going to speak up for those who don't have keys?

It's the responsibility of each one of us. As a patient advocate and patient reviewer for PCORI, what can I do to bring attention to the needs of people who do not have a voice, those who are marginalized by being part of a minority group or stigmatized by a health condition? Can I look at clinical studies and try to sort out whether and how the studies will help those who have no voice - no keys? 

Good Timing

Timing is everything, so they say. I'm not sure exactly who they are, but in this case I'll give them credit. Timing is important. It's the difference between a gourmet dinner and something we feed to the chickens. Good timing was getting to the bank to refinance our mortgage on the day the interest rates hit their lowest. Bad timing was arriving in Chicago at the same time as a major flood.  

Not great timing was applying for a scholarship the day before the due date to an almost full conference when the scholarships were first come, first served. I had seen the emails about the Annual Meeting for PCORI (Patient Centered Outcomes Research Institute) and hadn't even considered going. I couldn't afford it. I didn't open up the specific info and didn't see the scholarships until it was almost too late. I applied anyway, just because. 

The day of the scholarship announcement came and I heard nothing from PCORI. I did receive a phone call, however. It was my sister letting us know that her 27-year-old daughter, Jenny, had been diagnosed with a rare cancer, a high grade sarcoma. My niece is very close to us geographically and in our hearts and with her parents in California. I knew we needed to be present for her and make sure she had the support she needed. I was glad I hadn't heard from PCORI at that point.

Things moved very quickly after Jenny's diagnosis. I took care of her 16-month-daughter while Jenny had a PET scan and MRA. After taking everything into consideration, they decided they would go to the Sarcoma Center at UCSF for treatment. She and her husband had already decided they wanted to move back to California. Jenny wanted to be close to her family. They went back last Thursday and had their first appt at the Sarcoma Center on Friday. 

The good news is the doctors were very positive. The cancer has not spread and they are confident it can be treated. More good timing. Jenny and her daughter will stay there and her husband will come back to Colorado to work on getting his job transferred to California.

Two hours after I received this good news, I got an email confirming my hotel room for the Annual Meeting in Virginia. Nothing else, just the confirmation from the hotel. I made a few calls and waited. And waited. Last evening, I finally emailed my mentor and said I was assuming I wasn't going anywhere so maybe I should just cancel the hotel. 

Ten minutes later, she wrote back and another email came with the rest of the details. Yes, I had indeed received a scholarship and they would make arrangements for me to come. I sat and stared at the screen in shock while the puppy we are watching calmly chewed a hole in my 2nd best shirt - while I was wearing it. I kept staring wide-eyed, mostly because with all the to do, I had forgotten my meds and wasn't blinking. Timing again.

I freaked out for approximately ten minutes. I can freak out quickly if I need to. I felt badly I would miss seeing my brother and sister-in-law who are in town - BUT - now I know there's someone here in case there's an emergency with our parents. I was sorry to miss my daughter-in-law's father, who is also visiting - BUT - he will be helping out with the grandchildren. If there was ever a time when I could get away, this was it.

Chris encouraged me to go. He knows I enjoy travel and enjoy working with PCORI. I'll learn a lot and meet a lot of people. And I'll probably come back exhausted. If the scholarship notice had arrived on time, I would have declined. The timing wasn't right until I knew Jenny and her family were settled.

Chris, meanwhile, will have a nice quiet week, mostly to himself as Emma is back in classes during the day.

Good timing.