Back at Ronnie's House

Back at Ronnie's House

Where else could we have a dinner cooked by faculty from McDonald's Hamburger University? (No, it wasn't hamburgers) Home made cookies, cakes, brownies, muffins, and fudge? Mittens provided for a cold day when I forgot to bring mine from home? Someone to listen when medical issues become overwhelming? Be able to fall asleep to the rumbling of a freight train?

Early Morning magic

Early Morning magic

Sometimes it feels a little funny being here. We're old timers compared to most of the other families. People ask Emma how old she is and are surprised to hear she's 21. The only other adults staying here (besides Emma, of course) who are as old as I am are there because a grandchild is ill. Also, Emma is almost finished with her work with Shriners. We're here for check-ups or simple procedures, not because something is wrong.

Then again, on one of our visits to Ronald McDonald House there was an older couple staying whose daughter had just had a lung transplant. She had cystic fibrosis. They had been staying in this house for years whenever their daughter was in the hospital, and they were still welcomed even though their daughter was now in her 40's. 

It's been a full house this visit. Being so close to Christmas, it's been nice to have little kids running about, making noise, climbing across the kitchen counters.... which reminds me, I'd love for parents and teachers to see a child who is truly, truly hyperactive. They might suddenly realize there is a big difference between this child and their own very active child. If you can imagine a child with seriously deformed legs such that you cannot imagine how he can walk, let alone climb everything and anything and never, ever stop moving, you might start to get the picture.

During our many stays here at the house, we've met so many wonderful people from all over the country. Many come to have their child treated at Shriners Hospital. These children, like Emma, were born with some sort of challenge, but they aren't ill. They have surgeries on their legs, arms, spine, jaw, or repairs for cleft lip and palate. Others come because a baby was born prematurely or a child is very ill. We have met parents of new triplets, a lovely teenage girl who is being treated for cancer, a family whose apartment had burned down and their daughter was recovering from serious burns.

We've also met a number of families who have willingly taken on the work of raising a child with disabilities. Cheryl Wyse and her husband adopted six of their children and four of them have brittle bone disease. Another family had a total of 13 children, some biological and some adopted. Families stay as long as they need to stay. There is a family who has been here for over a year.

I love this house. It's not in the best area of town. We've been told not to ride the buses after dark and not to go walking in certain areas. The view from our window is railroad tracks and industrial looking buildings. The buses are not that reliable and it's not easy to get around. I still love this house.

One dad corrected us and said it shouldn't be called a “house” because it's really a home. I agree. I know I've written about our stays more than once. During this visit, perhaps more than the others, I've been struck by just how much of a home this has become for us. As the time for Emma's treatments come to a close, I find myself savoring every moment of our time here. In many ways, it's much more than a home. The closest word I can find to describe it is the Welsh word, “cwtch”, which generally refers to an affectionate hug, but the closest translation is “a safe place”.

That's Ronnie's house.

 

 

 

 

Stuffed, Roasted, or Boxed?

It was a rare moment when I was home alone. Chris had gone to pick up Emma at the light rail station. I had just returned from delivering mail to my parents and picking up our grandsons from school and taking them to their home. Time to sit down and make up my menu and to do list for Thanksgiving dinner. Then the phone rang. The caller thanked me for filling out his questionnaire and sending it back in and wanted to know when he could come over to talk to my husband and me. I didn't remember filling out any questionnaire, but the man was persistent. Perhaps it was my husband who sent it in. Whatever it was, we got it all sorted out and a few days later had our sit down talk with a friendly young man about preplanning (and prepaying) for our funerals.

It's one of those should do things that I'd rather not. At least this young man didn't ask questions about our health. Considering their payment plan included insurance, which means if you die before paying it off they won't make you continue paying, I wonder what they do if they find out you have a better than average risk of croaking before the last $ comes in? Not that I do. Parkinson's isn't a fatal disease, but the mere mention of a chronic progressive health condition can make the most enthusiastic insurance salesperson suddenly uninterested in you. The last one compared me to a racehorse with a broken leg.  

It has made us think. Planning ahead would be helpful to our kids, save us money in the long run, and ... what else do we need for our holiday dinner this week?

Going whole hog (or turkey) and having a casket funeral and burial is unbelievably expensive. I had no idea the average funeral costs $8000. 

Should we go with the Simple Roast Turkey recipe by Melissa Clark? Fix something more gourmet? Go to a restaurant? 

Maybe we should go the easier route and be cremated. My cousin died of ALS seven years ago. At his request, his ashes were put in a cardboard box and buried. Hid grandkids drew pictures which were then taped on the box.

Make it simple - concentrate on the side dishes. I especially like a Sassy Cranberry Sauce and yams baked with apples, raisins, and brown sugar. We'll have a big salad and, just for fun, some Bacon Wrapped Dates. For dessert, maybe I'll try something new and have Molly Ritter's Purple Sweet Potato Pie. Molly was one of my kindergarten students. Now she's a model and she enjoys cooking. All our bread baking obviously paid off.

Oh man, even a simple cremation is expensive. It's tempting to do what an old friend did and donate our bodies to science. This, however, might discourage anyone in our family from going to medical school. That cadaver they're working on just might be Grandma. We teased our friend unmercifully about her decision, even though we knew it was an extremely generous and noble thing to do. One friend suggested when the medical school was finished with her, we could have her stuffed and set her in the corner. How silly we were....

Oh, that reminds me... what are we going to do for stuffing?

 

Dressing up for Winter

The temperature dropped 40 degrees in 3 hours on Monday. This is a little more extreme than usual in Colorado, but still, I shouldn't have been taken so off guard. Perhaps we've just been spoiled. We had a real autumn this year with leaves turning wonderful colors, pleasant days of 65 degree weather, and cool, crisp nights, just right for snuggling under the covers.

Some years, the cold snap happens earlier and the trees don't have much time to do anything other than yell, "FALL!", as all their leaves and a number of their branches succumb to the storm.  

It's time to transition to sweaters, boots, and extra layers. It's time to make warm soups for dinner and keep the tea kettle busy. My routine from the past few years has been to take a couple of courses at the University each semester and to continue on with the Parkinson's yoga and dance classes to keep in shape. That's in transition, too. This will be the winter of taking care of our grandchildren and my parents. Day classes are out of the question, which is why I started Square Dancing one evening a week.

It was so cold yesterday our Square Dancing was cancelled. 

So I am hunkering down, looking through some old family photos, drinking tea, and tweaking my website. I don't say a lot about the nuts and bolts of putting this together. The Host of my website is Squarespace. I have always been extremely happy with this company. They just keep getting better. The new Squarespace 7 is so easy to work with, I was inspired to do some updating. I haven't had to write for help at all - and this is a first. If I had, I will say their customer service is excellent. 

And now, after tweaking for a few days, I think I will leave it be. I'll go back to looking at the old photos which inspired me to add a new page: Scribbles, Snippets, and Other Doggerel. Stop by now and then to see what's there. 

The photo I am using for this page is one I found while packing books and other odds and ends at my parents house. One single photo. I don't know who the children are, but it's impossible to look at this little girl without smiling. She will be my perpetual sunshine through the winter. 

Our grandchildren will also bring us smiles and keep us busy and warm. So, come on snow! We're ready!

Dancing with Angels

I was dancing with angels last night. No, I haven't died or started a new religion, and I haven't been indulging in Colorado candy. I was square dancing. Angels, in the square dance world are those more experienced dancers who volunteer to help teach new students by being their dance partners. 

Square dancing? Ask anyone if they've ever square danced and more than likely they'll say yes, but not since 6th grade. No matter which school they attended in which state, 6th grade seems to have been The Year for square dancing. They all remember how much fun they had and can't seem to remember why they never did it again.

Square dancing as adults? I've thought about it many times over the years as it was the only type of dancing my husband would consider, even theoretically. After looking into the clubs around town, I decided against it. I wasn't sure I'd fit in, much less my husband - even theoretically. 

Then came Linda, one of my dance teachers from my Dance for PD class, who excitedly told me how she had started learning how to square dance and how much she loved it. Seems she had looked at clubs all over the city before deciding on one. She had been discouraged too. "I just didn't fit in," she said, grimacing as she remembered her visits to various clubs.

"They were wearing the dresses, weren't they," She nodded and I nodded back sympathetically. Linda is from Brooklyn. She taught, and still teaches, ballroom dancing. Imagining Linda in a frilly square dance dress with all the petticoats? ....no. It doesn't work. And there is nothing, and I mean NOTHING that could get me to wear one. I am not a petticoat kind of gal.

The group she eventually joined was much more informal. Jeans and t-shirts. Lots of laughing. Lots of eating. Lots of parties. She had just finished her first year of lessons and invited me to come to their open house in September. She invited my husband, too, which, theoretically would have been nice, but practically, he preferred to stay home and read. 

The group is the Rocky Mountain Rainbeaus, an LGBTQA club. The Q stands for questioning and A? maybe it stands for All the rest of us, because it's an all inclusive group and one of the warmest and most welcoming groups of people I've had the pleasure to meet. They are into having some serious fun with dancing. This is not your 6th grade dance class. Fortunately, we start out slow and build on what we learn each week. It is a real physical and mental workout.

I've heard square dancing is becoming more popular among college students, especially those math geeks who see the steps as geometry equations. I'm glad I didn't hear this before I started or I may never have joined. I've lost count of how many members really did not want to join, but were talked into coming once, and then stayed to become leaders, organizers, and... angels. 

Here's their website:  Rocky Mountain Rainbeaus

 

 

 

Keeping our Sense of Wonder - Knowing what we don't know

This week I joined a small group of people with movement disorders at the University of Colorado Health Sciences Center and we had the privilege, once again, of being interviewed by groups of 2nd year medical students. I've done this for five or six years now and I've come to appreciate what I learn as well as the opportunity to teach the medical community a little bit about the reality of living with a movement disorder.

Intended to be a learning experience for the students, I believe it's also important for the teachers - the experienced medical doctors who are in charge of preparing the next generation of health professionals. We expect the students to be impressed when they hear about the realities of living with a movement disorder, but we don't expect the doctors to react. They've heard it all before.

During the interviews, however, they are listening in a much different way - through the perspective of the students. The students take things slowly. They hesitate. They ask their questions and wait. They are not thinking of the five (or ten or fifteen) patients still to be seen. They aren't trying to put together a diagnosis as we are speaking. They don't have the same knowledge or experience as the doctors and they know it. 

Something magical often happens. The doctor hears, really hears and suddenly comprehends one of the challenges we go through as patients. The students responded with interest and sympathy when they heard how drug side effects caused serious problems for me for two years before anyone, including the neurologist, knew what was happening. The doctors reacted more strongly and responded with , "Wait, what was that?" and they began asking me questions about what they could have done differently. One year, the doctor turned pale and seemed to forget the students were in the room as she asked me question after question. 

They realized how much they didn't know and this is, I believe, the best lesson for the students.  

I had symptoms for 5 years before I was diagnosed with Parkinson's disease. Looking back, it's not the length of time which was so frustrating, it wasn't even the misdiagnoses. My PD presented itself in a way which differed from the classic symptoms. The frustrating times were when I had doctors who were so very, very sure of themselves.

It's a fine line, I know. Doctors need to be confident in their abilities, otherwise they would be second guessing themselves all the time - and that isn't healthy for them or their patients. Having the ability to say, "I don't know. I'll have to think about this and talk with some of my colleagues" when they have an unusual situation is reassuring, at least to me. 

It means they haven't lost their sense of wonder. It means they know there's a lot they don't know. These are the best doctors.

 

 

 

Learning How to Grow Older

As I watch my parents get older, there are so many things I think about. In fact, there are so many things, I have to keep lists. Most of this is purely practical: the paperwork I need to get done so they can move to their assisted living apartment, what they will need to bring with them, what are all those things they can't take with them and what will be do with them. That's a long enough list to last a few months right there. 

For better or for worse, we can't be only practical when it comes to our parents aging. There's a whole range of emotions and memories, as well. There's also some dirty laundry to deal with, even if it's just in my own mind, and it has to be sorted, cleaned, and hung out on the line to dry. 

It's also made me look at how I want to be as I get older. Do we have a choice?

It's debatable how much of our health is due to our lifestyle choices and how much is due to luck, karma, and good genes. Eating healthy and exercising is good, but then my grandmother ate lots of rich desserts and she lived to be 97.  My choice, my ideal, would be to live a full life and be able to say at the end, as my mother-in-law did, "It's been fun, hasn't it!"

What I've learned this summer is I don't ever want to resent being a year older. I'm not going to buy into the youth obsessed culture. I don't want to pretend I'm still 35. I'm not. I don't want to dye my hair or hesitate when someone asks my age. Why would I? Being 57 is cool! Each time in our life is unique and I'm enjoying my life right now.

Don't tell me I'm 57 years young. We wouldn't tell a child he is 10 years young. I'm getting older, not younger. All of me is getting older. I don't have the physical body of a teenager or young adult and, thankfully, I don't have the mind of a teenager, either. I wouldn't want it. A lot of work goes into learning and developing as an adult, and the work never stops. 

I don't want to fear getting older. I don't even want to fear getting very old. Many people don't make it that far. I'm not afraid of nursing homes. I worked in one. There's also the example of our former neighbor who, at the age of 92, met a lovely old lady in the nursing home where they both lived. They spent their days holding hands and talking to each other. No one else understood what they were saying, but they enjoyed every moment. I'd like that. If the other person was my husband getting very old with me, it would be even cooler.

The only thing that scares me about dementia and Alzheimer's is the possibility of becoming mean to people I care about. Even then, I know it's a phase which sometimes, but not always, accompanies these diseases and inevitably will disappear in the fog of memory loss. The memory loss doesn't worry me nearly as much. The heart often remembers, even if the brain doesn't. At least I believe this is true.

Ah, if I wasn't in the middle of taking care of my elderly parents, I wouldn't be spending time thinking of what it would be like to turn 85 or 90 years old. I've still got a long ways to go and I'm far too busy being 57 and spending time with my favorite 60 year old, 33 year old, 32 year old, 30 year old, 21 year old, 4 year old, 3 year old, and 1 year old.... not to mention my 85 and 90 year old parents.... and all those friends in between... to dwell on.. well, anything at the moment. 

So I'll just leave you with a few good quotes from some amazing women:

Aging is not lost youth, but a new stage of opportunity and strength.
— Betty Friedan
At 20, we worry what others think of us. At 40, we don’t care what they think of us. At 60, we discover they haven’t been thinking of us at all.
— Ann Landers
The great thing about getting older is you don’t lose all the other ages you’ve been.
— Madeleine L'Engle
I’m a person who gets better with practice. Getting older is awesome because you get more practice.
— Zooey Deschanel

                                                                                                        


"At my age, I doubt I have more than twenty good years left."

At my age, with all my aches and pains and health problems, I doubt I have more than twenty good years left.”
— Jim Myers - age 90
Dad.jpg

Dad's turning 90 tomorrow. He has said all year he wanted a big blowout party for his 90th birthday. Unfortunately, we are all worn out at the moment and the big blowout is going to be much more of a quiet day with a number of visitors stopping by to wish him well. 

We're worn out because we're in the process of moving them into an assisted living apartment. It's a huge move, especially for a couple of pack rats who are finding it difficult to downsize. 

I've had the privilege of being able to spend time with Dad each week, taking him to the grocery store and helping him shop. After initially balking at the idea of the electric scooters, he is now a pro at driving around the store. He hasn't hit anyone yet. My biggest challenge is making sure he doesn't get more food than can fit in their fridge and trying to convince him he doesn't have to buy me a large package of Velveeta cheese - or anything else.

This time, during our weekly visit to the store, has been precious to me. Even though I know he won't need to buy groceries after their move, I've told him I'll still take him to the store - or somewhere every week. Maybe we'll go to a hardware store. I like hardware stores as much as he does.

I hope I can age as gracefully and with as much wonderful (and sometimes wicked) humor as he has. 

 

Don't Brush off the Drug Factor

It was inevitable. As soon as the news announced Robin Williams' diagnosis of Parkinson's disease, I felt a wave of panic surge through my entire body. Despite telling myself I was jumping to conclusions and we'd probably never know what factors were in play the day Robin took his life, the question would not leave. I went to my internet support group and, sure enough, someone had posted this very question on the forum. Seems a lot of people were wondering the same thing.

Was Robin Williams on a dopamine agonist drug? Did his PD medications have anything to do with his suicide?

This morning I learned that a good friend of Robin's, Rob Schneider, has publicly questioned the role of Parkinson's medications in his friend's suicide. Afterward came the predictable response from the medical community (Doctors Blast Rob Schneider's Parkinson's Drug Twitter Rant)

We don't know and will probably never know what caused Robin Williams to take his life. We don't know which medications he took for his Parkinson's. Most importantly, we really don't know enough about the brain and how exactly it works with drugs, our environment, and our unique personalities to say anything for sure. 

Just don't brush it off.

HEY DOCS... did you hear this? DON'T BRUSH IT OFF! Medications don't have "side effects", only effects. These effects can vary a lot from one person to another. Effects can start out slowly and build up after time - even without a dosage increase. And you know what else? Those of us who often report adverse effects from drugs are often brushed off because you all decide we must be imagining things.

After telling my nurse NOT to give me any medication for pain after surgery, the nurse responded with impatience and even anger. I obviously didn't know what I was talking about. When I threw up after waking up from surgery, the nurse scoffed at me, saying "Now what do you think of recovering from surgery without pain meds?" Two days later, she came to me white faced and shaky, and said, "I've never seen anyone as sensitive to medications as you are." It was as close to an apology as I would get.

After experiencing some not-so-helpful effects of dopamine agonists, my neurologist at Kaiser (great doc, Dr. Lindsey Hudson) put it this way, "You're just one of those people with a brain that's easily inspired."

No, that's not a euphemism for total nut case, it means just what she says. My brain is easily inspired, whether by drugs, poetry, art, music... I'm an artist. The connection between artistic creativity and psychopathology (extremes in mood, thoughts, and behavior) have been studied for a long time and the link is clearly established. Our brains are wired differently. It's not always the easiest brain to live with (just ask our spouses), but it's worth it. At least I think so.

"Easily inspired" is also a warning. Be extra careful when doing anything which will affect this brain. It's going to react differently than what you might expect. It may go zipping across the house, ricocheting off walls and ceilings, it could hide out in its room and not want to come out, or it could jump off the high dive - with or without water in the pool. Medication can also be the spark which lights the inferno and makes anything less scary than being consumed by the fire, even suicide. 

DON'T BRUSH IT OFF!

Sure, neuroscientists are learning more and more all the time, but really, we're still like Model T mechanics trying to understand the Space Shuttle. 

So, docs.. please, before you get out your prescription pad to prescribe any medication which affects the brain, get to know your patients a little. Find a way to check in with them often enough, especially at first. Suggest they have a family member come with them to appointments. Make sure the family member reports any changes in the patient's personality or behavior - too happy, sad, or angry? can't let go of thoughts? baking 12 dozen chocolate chip cookies every week? Spend more than 10 or 15 minutes with each patient and really listen. 

Don't brush off the medication factor. Our lives may depend on it.