Some Thoughts on Awareness Month

One step out of the store and I knew I was in trouble. I had no idea where I had parked my car. I’m not really getting forgetful, I just had a lot on my mind. I had just come from talking with a social worker and, finally, was feeling reassured about my health insurance. Maybe all those Humpty Dumpty pieces will go back together again, after all.

At that moment, however, knowing this wasn’t helping me to find my car. As I stood there, looking puzzled, a man walked up and looked at me. Was it so obvious I was lost? I guess so. I confessed. I had forgotten where I’d parked. I felt silly, but the man just smiled and asked what kind of car it was. I blanked out completely. After a pause, I pointed to one closest to me and said, “It’s shaped like this one, but it’s dark red.” He nodded, glanced over and said, “That Nissan Rogue over there?” YES! That was it!

It wasn’t until he was walking away that I saw the telltale stiff walking, no arm swing, and tremor in his right hand. I’d had an encounter with another person with PD and neither of us were aware of it, at least not while we were talking together.

I recently received a lovely honor for my blog. It is listed as one of the Top Ten Real Life Parkinson’s Blogs. What I love best is the description:

“Terri Reinhart’s blog, Studio Foxhoven, is far from ‘a blog about Parkinson’s disease’. Rather, it is a frank, honest, and often humorous journal of any and every aspect of her life that she deems worthy of writing about. It just so happens that some of those aspects are, in part, shaped by Parkinson’s, with which she was diagnosed in 2007. “ from My Therapy App blog .

Over the years, I find myself writing less about Parkinson’s and more about life. It works for me. It’s not so interesting to write just about my Parkinson’s anymore. My PD and I have gotten to know each other well enough, it’s old hat. There are a lot of new things in my life right now and I don’t want to limit myself in what I write. I’m grateful the award site appreciated my attitude, too.

Have you ever heard of Sjögren’s Syndrome? Or Relapsing Polychondritis? Or Dandy-Walker Syndrome? How about Mast Cell Activation Disorder? Did you know April is also Sjögren’s Syndrome Awareness Month? These are rare disorders, but I happen to know someone with each of these challenges. I hope you are curious enough to look them up.

I know we need to spread awareness of Parkinson’s disease. We are somewhat privileged, though, and it’s important to remember we have some very big name people helping our cause: Michael J Fox, Billy Connolly, Alan Alda, Linda Ronstadt, Neal Diamond. .. to name a few. You might have heard about Sjögren’s Syndrome from tennis champion, Venus Williams, who also has this diagnosis. The other syndromes aren’t connected with anyone famous, so unless you’ve known someone personally with one of these, this is probably the first time you’ve heard about them.

April is also National Mental Health Month, National Autism Awareness Month, Irritable Bowel Syndrome Awareness Month, Women’s Health Care Month, Stress Awareness Month … and many more like National Poetry Month, National Fair Housing Month, and National Soft Pretzel Month. It’s also National Humor Month.

With so many many things to be aware of, it’s difficult to see how anyone can remember them all. I’ve looked ahead to May and I’m overwhelmed already! May is almost here and brings with it National Correct Your Posture Month. National Stroke Awareness Month, and National Asparagus Month. There’s one nice one arriving: National Date your Mate Month. I’m putting it on the calendar.

It’s not May yet and there’s lots I need to be aware of this month…starting with Where Did I Park My Car. Is there anyone famous out there who has this challenge?

Keeping Time - all night long

We have no shortage of clocks in our house. There are digital clocks on the oven, the microwave, the coffee maker. There’s a large wall clock over the table. And, if by chance, we miss seeing any of those, there’s a large wall clock in the dining room that chimes every half hour.

It’s a very impressive way to feel the time passing as we have two more chiming wall clocks that announce every half hour as well; one is in Chris’ study and one is in the basement. One of the three, we brought from Colorado. The other two were left here by the owner. They all work, but they are pendulum clocks. These delightful, wonderful machines are a little finicky. They must be wound, but not over wound. They must be perfectly level. There’s a tiny mechanism to turn to make sure the clock is going at the right speed.

They all work. One is on time. One tends to run fast. One tends to run slow. This is handy if we don’t happen to hear the first clock. Or the second. Or notice all the clocks in the kitchen. When all else fails, and our cell phone battery is dead, the third clock chimes in, just on time…. or a little behind time. It’s trying hard. In just the right spot in the house, like our bedroom, one can hear all three.

Which is all to say I couldn’t sleep last night, but I knew what time it was. When the clock chimed once, I knew it was… uh… 12:30? 1:00? 1:30? Midnight was glorious with 36 chimes: 12 at 5 minutes till, 12 at the hour, and another 12 at 3 minutes past. I heard the 2 o’clock chimes, the 2:30, the 3:00, the 3:30… At 5 o’clock, I gave up and got up. I try to make myself stay in bed until 6, but it doesn’t always work.

It’s 6 o’clock now and I’ve been up for an hour. Even then, I missed the Parkinson’s Insomnia Club meeting. I think it started at 3:00. I’ve never made it to the meetings, sleep or no sleep, so I don’t know what they talk about. Mostly I’m not really fit for human company at 3 am, so I lie awake coming up with story ideas, which I tend to forget as soon as I get up. It’s a pity, because I suspect they are really good stories, mostly because they keep me entertained for hours.

It’s 6 o’clock again. I’ve been up for an hour and 5 minutes. The furnace just came on with it’s ritual bangs and clatters. It’s raining outside, too, and the birds are singing. Who can sleep with all this noise?

And…. it’s 6 o’clock again. The last of the 18 chimes have chimed. It really is morning.

Time for tea!

Our Own Fab Five at Work

Like many people, I've been enjoying watching the new Queer Eye series on Netflix. And like, probably most of the people who watch the program, I fantasize about having the Fab Five come to our home and help us redecorate, cook, buy clothes, change our hairstyles, and give us a pep talk to get us revved up about our lives.

Reality check: 1) Getting accepted for a Queer Eye makeover would be kind of like winning the lottery. 2) Imagining what the guys would say about my sense of style is humbling. Maybe it's best to figure out how to do this on my own.

I'll admit, I don't want advice on clothes. Two pairs of jeans, two pairs of shorts, some t-shirts and other odds and ends and I'm good. I'm taking my fashion hints from my husband. Oh, and... no more skinny jeans. Been there, tried that. At my age and shape, they make me look like a lollipop. I wouldn't mind help with cooking, but if I'm honest, I really just want someone to cook for me.

Our Fab Five this summer are the foster puppies. Above, you can see 4 of the 5 taking my crocs out to the garden. Obviously, crocs are not in style for me this year. Jeans are in style. Long pants in 90+ degree weather. When I rebel and wear shorts, they remind me with their needle sharp teeth and claws.

They help with the landscaping, too. So far, they've taken out three types of Sedum plants, a woodsorrel, my peppermint, and the ornamental grass. The plants they've decided to leave to grow in my garden are bindweed, crabgrass, lamb's quarters, and common mallow. Interior design consists of numerous dog beds, pens, and pee pads. Oh, and dog toys. My new hair style is carefree. 

Taking on the care of foster puppies on top of all my other responsibilities and on top of trying to take care of myself and manage my Parkinson's/Dystonia challenges doesn't make a lot of sense. I don't get enough sleep and it's a lot of work. There are days when I crave just a few hours without a puppy whining or a mess to clean up. Aside from being with our grandkids, this is the best retirement job I could imagine.

What the puppies are really, truly good at is giving us the opportunity to sit and play and just be loved. 

But it's just a headache!

We didn't go to the doctor very often when we were growing up. Unless we needed stitches, a cast, or had strep throat, we pretty much made do with home remedies... or just simply waiting it out.

We didn't go to the doctor for the simple stuff like ear infections or childhood illnesses. An earache meant getting drops of warm vegetable oil in your sore ear. Mumps, measles, or chicken pox meant letting your siblings drink out of your glass so everyone would get sick at the same time. A headache? Lie down with a cold washcloth on your forehead. Rest. It will go away eventually. Stomach flu? Just try and get to the bathroom in time; when we could eat again, we got warm jello water. 

A few weeks ago, my dad was having some pain. "It's okay," he grimaced, "it'll go away in a minute. It always does." When we finally got him to the emergency room, we found out he was having a heart attack. He expected a heart attack would have been more painful and obvious. 

Somehow, I got the message that going to the doctor, the emergency room, or even being in bed sick for days meant I was being lazy. I don't think I was taught this, it was just something I picked up on my own.

via GIPHY

In my 20's, I started having migraines. I didn't know they were migraines. They were headaches, albeit rather severe headaches.. that lasted 3 to 4 days. Who goes to the doctor because of headaches? Who stays home from work because of a headache? Still, over the years, I mentioned my headaches to the docs now and then. Some brushed it off, one suggested I take Ibuprofen every 4 hours - indefinitely. One told me I wasn't having migraines. I didn't find the docs very helpful; but then, I wasn't articulating my concerns very well, either. It was just a headache. 

I've learned a lot in recent years. Migraines may be an early indicator of Parkinson's disease. I've found out that a lot of people who have Dystonia have migraines. My three day migraine parties are not unusual. The nausea and sensitivity to light adds to the festivities.  Then, after the major headache is gone, along comes the Migraine Hangover. That's the day when your head isn't pounding anymore and you don't feel like throwing up; your head just sort of aches here and there, and your body feels like it's been rolled down a rocky hill, through a creek, and left overnight to dry.

Some people get an "aura" (seeing lights, smelling something, etc) that tells them a migraine is coming. I get cravings for certain foods, which I will never crave, ever again. Last week, I suddenly just had to have hash browns. I ate a lot of hash browns. I now hate hash browns.

The biggest thing I've learned is that headaches can be a big deal and docs actually take you seriously when you seriously ask for help managing them. There's medication, even some I can take, that will knock out a migraine in progress. Of course, there's the possibility of a "blow-back headache", and I can only safely take the medication so many times per month, but it's something.

I'm getting a little bit better at figuring out when to go to the doctor.. and.. there's no such thing as "just" a headache.

When getting enough rest can't happen

Unrest - an award winning film about Chronic Fatigue Syndrome

It's the most challenging of all the challenges I go through with my Parkinson's/Dystonia brain and body. The twisting and even the dystonic storms are tolerable, mostly. I'm getting used to the slowness and heaviness of my physical body. Though the ease in which I can choke is disconcerting, I'm learning how to manage this. It's the exhaustion that gets to me.

It's this which helps me relate to the experience of people with Chronic Fatigue Syndrome. When I saw this description on a facebook post:

"When you are chronically ill, grief is a constant process. Lately, I've been doing better. My treatment regimen is working. I haven't truly crashed in months because I've charted every millimeter of my invisible fence. Within it, I am well enough to forget just how sick I truly am. When I forget, I get careless, and when I am careless, it all comes screaming back again."  ~Jennifer Brae

I read over it three times. Yes. Yes yes yes yes. This is what it is like. When it doesn't affect us 100% of the time, it's hard for other people to understand. "You look fine to me" "But you do all kinds of stuff" "You have Parkinson's? I would never have known". I don't get upset about people not understanding this. Heck, I don't understand it. I feel normal today so I get stuff done which I've been wanting to get done for weeks. I never know what will throw me off. What is too much? Where is my invisible fence?

Jennifer Brae has made an award winning film about Chronic Fatigue Syndrome. It will be showing in Denver on April 8, 2017. It is called Unrest. I'm getting ready to order my tickets now.

I still chuckle when I think of the person who advised me to never say I'm tired. That's too negative. I should say, "I'm relaxed". HA! When I'm relaxed, I'm not tired. When I'm tired, it means my body has decided to do things without consulting me; things like getting into a virtual bar fight and getting sucker punched over and over, trying to imitate the girl in the exorcist by seeing how far around my head will turn, and twisting up into the "I lost at Twister" pose.

We have to pay attention to our bodies. If I don't really and truly pay attention to the signals my body gives me to slow down, I will crash and be in bed for days. No, not relaxing tired; it's the kind of tired you get when you've got a bad case of true influenza, without the coughing or sore throat, but with headache, muscle aches, feeling shaky and weak, and heart starting to beat faster kind of tired.

There's a fine line between positive thinking and denial.

Yeah, I get it. There's also a fine line between being aware of our body and being self absorbed and overly anxious about every little twitch. Most of us went years without a clear diagnosis so being too self absorbed and anxious is understandable. It's mostly because we are or were trying so hard to understand what's happening to us.

I don't grieve a lot for the life I had before I had Parkinson's. In many ways, it's just gotten better and better. When I do grieve, it's because of the exhaustion. I want to have energy for my family. I want to have plenty of energy for our grandkids. I don't want to just be present, I want to be present and active as much as possible.

We're fostering a little Chihuahua/pug mix dog for Life is Better Rescue. Viv is the sweetest little dog and is fairly calm, most of the time. We discovered what happens when the door opens and she gets out. She took off so fast yesterday, I was scared we'd lose her. I get it, Viv. That's sort of what I do when I feel good and the door to my energy is open. I'm outta that invisible fence and off down the road before I stop to realize just how far I've gone. I've resorted to putting a leash on Viv if we're expecting people over. This way, if she makes a dash out the door, I may be able to step on the leash and prevent her from going too far.

Hopefully my family won't do the same to me! Maybe I shouldn't give them any ideas.

Parkinson's, Eating, and Cyborgs

It's amazing how much we do during the day without thinking about it. Actually, it's a good thing we don't have to think about everything we do every day. If we did, we wouldn't have time for anything else. We'd need an entire crew to manage everything.

Captain:  Body - Report.

Data:  Heart - Currently at 74 beats per minute. Adjusting for emotional fluctuations and exercise levels, we should see an average of 69.327 beats per minute over the next 24 hrs. Blood pressure holding steady at 104 over 62. Lungs - respiration in the normal range.

Worf: Weapon systems operational, but only when startled. There seems to be some electrical malfunction. The limbs aren't receiving the proper signals. This indicates a weakness. Captain, are you sure this body is worth maintaining?

Captain: For now, yes. As long as critical operations hold, it's the only body we have until the 27th century. We need to keep it running. LaForge, what about the climate control?

Geordi:  There's something going on with the heating system; too many fluctuations. I'll see if I can make some adjustments.

I thought I was up on all the crazy symptoms of Parkinson's. I know we have to actually THINK about things like blinking, swinging our arms while walking, not looking and sounding like we are drunk when our meds wear off. I never thought I'd have to think about swallowing. 

I've been feeling sorry for myself since my neurologist and speech therapist agreed that I cannot eat unless there is someone close by who can do the Heimlich maneuver. This is when I learned about one more thing I do without thinking about it: eat. No more grabbing a few toasted almonds when I go through the kitchen. No meals when I'm alone. Makes me grumpy.

Scotty:  She canna take any more, Captain. She's gonna blow!

Until I remember some of my fellow Never Give Up Warriors who go through Gastroparesis. This is when one's stomach becomes paralyzed. I would try and explain, but I'd rather let Meg tell you herself. Meg Bernard is "Small Girl with Parkinson's".

In honour of Feeding tube awareness week, I'm reposting the story of when I got my feeding tube. I have moved on in my journey and now eat intravenously 'with my heart'; but my GJ tube is still a huge part of my world as I use the J portion for medication and the G portion to drain my stomach (yes, it's as nasty as it sounds). My central line, my GJ tube and my DBS are my miracles...AND they qualify me for the elite status of "Cyborg". You can't beat that!

                 It’s my Tube-iversary ~ Memories

DECEMBER 5, 2015 / MEG BERNARD

~ Meg Bernard; Small Girl with Parkinson’s

Happy “tube-iversay” everyone!
November 28, 2015 marked the one year anniversary of the absence of all things swallowed; the insertion of my Jejunostomy feeding tube (it bypasses my stomach feeding directly into the second part of my small intestines). It feels like only weeks ago, yet also a lifetime ago.

To read the entire article.... which you should... click here.

As much publicity Parkinson's has received because of celebrities such as Michael J Fox and Mohammed Ali, we still often get asked the question, "Parkinson's? That's the one where you shake, right?" Ah, if only that was all it did, most of us would say; not that shaking all the time is a walk in the park. I've been fortunate. While my biggest challenges are dystonic storms and choking, I can still eat and drink. Gastroparesis is one of those possibilities we don't hear about.  And Meg is an inspiration to all of us, even those of us who aren't Cyborgs... yet. It's all about being alive and ready to keep learning and discovering.

Captain: Now, do you have course and speed laid in?

Wesley:  Yes, sir, they are.

Captain: Very well, Mr. Crusher. Engage

  

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!

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