Adventures in Grocery Shopping

Amazingly, there were handicap parking spaces available, right in front of Costco and right before Costco opened for senior hour. I probably should have been suspicious, but then, it’s been awhile since I’ve gone shopping. Chris usually does the shopping and he’s more in tune with what we need, rather than what sounds good in the moment. I tend to shop like my dad.. more so after spending a number of years shopping with him. I was good today. I did not buy the extra large two pack of Nutella.

After I parked, I noticed there was a line of people with baskets, standing in socially acceptable blocks of space. Ah. Though I’d gotten up too early and wasn’t 100% at the top of my game, I realized I’d have to get in the line. Fine. The line snaked around the corner of the building. It’s okay, I thought. It’s early. I walk better in the morning. Cruising around the corner, I gasped to see the line all the way down and around the next corner. Okay, I thought, I’m here already. I may as get in line and do this.

I parked the car at 8:10. I got to the end of the line at 8:25. Cruising may have been a bit of an exaggeration. At 8:31, a masked man came down the line, yelling to everyone to make sure they have their Costco cards out to be checked at the door. Not doing so would hold up the line.

At 8:35, I was at the front door, showed my card to the nice young person outside the door, then put it in my purse. Another 5 steps and a young woman asked to see my card. Oops. I guess the other guy was just directing traffic. I fumbled in my purse for the next minute or two and finally pulled out the card again. Everyone was glaring at me. I took my cart and went down the first aisle I could.

From there on out, I lost track of time. It is with great excitement I can announce - they had toilet paper! I got a 30 roll pack of Charmin. Charmin! Not scratchy cheap generic 1 ply, but TP for royalty! I would have jumped for joy, but having used most of my energy reserves waiting in line, I decided to save what remained to (hopefully) keep the brain running on all synapses. It worked for awhile.

I don’t do the shopping anymore because I wimp out before I get to the things we really need. I’d come home with Nutella and chocolate chips, but no fresh fruits and vegetables. Chris kindly decided to take over so we’d live long and prosper.

I did not come home with Nutella today.

So why did I go to Costco by myself today? Because I was awake and up and had my morning energy and the senior hour was from 8:30 to 9:30 and I wanted to do it.

To my credit, I came home with asparagus, oranges, chicken, cheese, strawberries, potatoes… all in large Costco size quantities. I also came home with 4 lbs of powdered sugar, 4 1/2 lbs of chocolate chips, and two large jars of pickles (one dill, one sweet and spicy). Then I wore out. I had a list of everything else we needed, but the legs said no and the brain said huh? and I figured maybe I’d best get home before I passed anything shiny to pick up and bring to our nest. Animal instincts were about all I had left. I also desperately needed to pee.

So, back to the car, took the mask off and took a deep breath of fresh air. Despite having an itch start in my left eye and travel down to my nose, I did not touch my face. By the time I arrived home, the itch had become a twitch and I abandoned the car for Chris and Patrick to unload, taking myself in for cleaning.

Chris said I did well, which I think means he’d let me do it again. Nice. He didn’t even say anything about the chocolate chips or the 4 lbs of powdered sugar. If we run out of meat and there are shortages, we’ll just have to live on chocolate chip cookies. And pickles.

Maybe next time I’ll have enough energy to find the spaghetti noodles and jam and whatever else was on the list. Maybe we’ll just order them from the regular supermarket.

I wonder if they have Nutella?

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!

Kate

Two pieces of news came to me the other day, almost at the same time. The first was news we all heard: Alan Alda came out publicly to say he had been diagnosed with Parkinson's disease 3 years ago. As he was diagnosed quite early, before the classic symptoms of PD had begun, he is still just beginning this journey. Not long after reading this, I received a message to say Kate Kelsall had passed away on Sunday, July 29, ending her journey with Parkinson's disease.

Ask anyone who knew Kate and the first thing you'll probably hear is "She was a force to be reckoned with". Kate took the Parkinson's community by storm. She had DBS surgery and, with Valerie Graham, was a patient liaison for patients having DBS and they started the Bionic Brigade support group. She talked Paul and Carolyn Zeiger into starting a support group for caregivers. She danced, played accordion, went to the World Parkinson Congress in Montreal, won a channel 7 Everyday Hero Award with Valerie, among many, many other things, and... she wrote a blog.

In her very first entry, dated September 27, 2006, Kate talked about being approved for long term disability benefits, thus confirming what she knew already: Parkinson's disease is "chronic, permanent, progressive, and incurable". She had hoped she would be the 2nd miracle which Pope John Paul II needed for his sainthood application or at least the "DBS or PD poster child". In the last paragraph, she makes a sobering observation: The letter further stated: “In no event, will benefits be payable beyond October 1, 2015.” Oh well, perhaps I won’t have to worry about it. I doubted if I’d even be around with advanced PD in 2015 or as Nora Ephron described it her latest book, "I Feel Bad about My Neck" as “dancing around the D word.” 

Kate talked about her DBS surgery, dancing, her challenges with speech, her frustrations and her victories. She listed resources, talked about various forms of exercise, and discussed ways to make our lives better. She interviewed others and encouraged guest bloggers to allow her to publish their writing. She was the first person to publish my articles. I'm not even sure how she found out about my writing. 

She also wrote about death. She didn't even "dance around the D word". Kate talked about the death of her mother: "We fear that our Mom who suffers from Lewy Body Dementia (LBD) will either choke to death or starve to death." and "Aspiration pneumonia, a leading cause of death with Parkinson’s patients, often develops as a complication of mealtime swallowing problems, leading to the inhalation of food and drink."  She answered one reader's question on October 16, 2007 with: "Frankly, my greatest worry is when and how I am going to die. The only blog posting that I started but didn’t finish was about dying with or from PD."

I argued with Kate about this. We got together a few times and we corresponded a lot through email. She told me she certainly wasn't going to live to be 80 years old and that she'd probably die of aspiration pneumonia. I insisted that we don't die from PD, but with PD. She smiled. She was sure she was right. We argued amiably about a few other things, too, like whether one could drive with dystonia and the proper length for blog posts. This one would already be too long in her opinion.

It's humbling to realize now, but Kate was right. When she died of aspiration pneumonia, 21 years after she was diagnosed, she was 67 years old. Parkinson's disease not withstanding, she barreled her way through life, always working to provide support and resources for people to make their lives better. It's really hard to imagine any Parkinson's function without her.

Well, Kate, take a little breather then, wherever you are, keep on being the force you were here on earth. Sing! Talk and yell and shout and dance! You've finally left your PD behind for good.

Wisdom and Strength and Love Shall Grow

Having a sympathetic young police officer NOT give me a speeding ticket is one of the perks of being an elder, but being an elder also means learning how to let go. We have to let go of bits of ourselves, what we used to do, who we used to be. With any progressive neurological disorder, letting go starts a lot sooner.  What happens when we get to the point where there are things we can't do anymore? 

Okay. Stop right here. I know what you're thinking. I've heard it before, many times. Please don't send me the quotes and memes saying, "Stay positive! Don't ever say you can't do something!"  I don't want to see the videos of 99-year-olds riding skateboards, climbing mountains, or running marathons or the videos of 99-year-olds with Parkinson's riding skateboards, climbing mountains, and running marathons. I get the point. If they can do it, so can I.

Right.  

The message in these memes and videos? Running marathons = awesome, walking with a walker = not cool.   Climbing mountains = awesome, needing help to climb stairs = not cool. Riding on a skateboard = awesome, riding a mobility scooter* = not cool. If we must have Parkinson's or if we must get old, be like the awesome ones. I know it's all meant to be inspiring, but too often it's discouraging. Nope. I obviously can't be awesome because, try as I might, I'm not going to climb mountains or run marathons or ride skateboards.

Stop again. Breathe out. All those memes and videos? Hit the delete button.

Now, a reality check. Giving up the awesomeness of climbing mountains, running marathons and skateboarding isn't difficult for me. I don't do those anyway and, if I'm truly honest, I don't want to. It's when I have to give up things I love to do, that's my true test.  

Because of fatigue issues, I've had to give up a few things - working full time or  even part time, volunteering regularly, doing more than one major activity per day and not more than three per week. I've been very lucky. What I've had to give up, I've been able to replace with other activities like naps...and, well, other things... like naps.. and... Okay, instead of felting intricate pictures and figures, I'm knitting little animals for my grandchildren.  I can join my husband on his daily walks if I adapt and use my cool scooter*. I can, occasionally, be in a clinical study and once in awhile, I even get paid for it.

We all respond differently when we are faced with chronic health challenges and the challenge of growing older. Some will choose to not go gentle into that good night, but will, as Dylan Thomas' poem advises, rage, rage against the dying of the light. Some will pretend their challenges don't exist and try to pass as a younger person in perfect health. Some will be convinced their challenges will go away if they are just positive enough. Some will climb mountains and ride skateboards till the day they die. 

I don't want to spend the rest of my life raging or feeling guilty because I'm not climbing mountains.

My mentor is Dr. Paul Zeiger, engineer, scientist, university professor, yoga teacher, poet, and PWP (person with Parkinson's). He says we are given many opportunities to reconfigure our lives according to the resources we have available to us. He knows. He and his wife, Carolyn, have had to do this time after time. Paul says that growing old is the most difficult work a person will ever do. For some of us, a marathon is also known as getting through each day.

There is a verse which is said by the first and second graders at the Waldorf school at the end of each day. It allows the children to put their academic work aside, let it rest.

“All my doing now has ended.
What I have learned shall rest.
When I have done my very best,
wisdom and strength and love shall grow
and I will bless all those I know.”

We tend to identify ourselves by what we do and when we lose the ability to do something, it can be like losing a part of ourselves. We have to reconfigure ourselves and find out what this new.... or older body can still do. If we get stuck trying to hold on to who we were once upon a time, we're not leaving room to discover who we are now. The time for doing some things may have ended, but we can let them rest and trust in what we have learned from our doing.

We have to grieve and maybe even rage a little. But what if we take Paul's advice? What if we could let go of those lost parts of ourselves and let them  go gentle into the good night? If Paul and Carolyn's lives are an example, we know if we can let go and let those things rest, our lives are not empty, but will include wisdom, strength, love, and the capacity to bless those around us.

Skateboarding is optional.

*My mobility scooter IS cool. Some 12 year old boys told me so. It is a TravelScoot, the best little scooter ever. Thank you, Roger, again and again, for blessing me with this gift and the bigger gift of a connection with our family in Luxembourg.

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.

About Dystonia - the best resources I've found

As some of you may remember, my official diagnosis is either Early Onset Parkinson's with dystonia that responds to dopamine or Late Onset Dopamine Responsive Dystonia with Parkinsonisms. Either way, the treatment is the same and they are both progressive neuromuscular disorders. The latter is less progressive than Parkinson's, but it is progressive.

And regardless of the diagnosis, I'm also a part of the Insomnia Club, at least part of the time. This is an exclusive club to which many people with Parkinson's and Dystonia belong and it consists of informal online meetings anywhere between 1 and 5 am. It was during one of these meetings that I found the following articles and news segment about Dystonia.

The first describes a typical dystonic storm and, for those of us who experience this, how to tell the difference between a dystonic storm and just a worsening of symptoms. The author, Tom Seaman, has probably the best blog out there about dystonia. Once I started reading his articles, I had a hard time stopping. 

What Really is a Dystonic Storm

The next one is an unusual story about a woman who was diagnosed with cerebral palsy as a child and lived with that diagnosis for 33 years before learning she had Dopamine Responsive Dystonia. At 33, she finally started taking levodopa. Suddenly she was able to run and play with her children, go on hikes, and drive a car. Jeanne Sharon Abbot has written a book about her experience and maintains another amazing blog about Dystonia. In doing this, she has helped at least 20 other people who had been misdiagnosed as she was. This is why we blog about our experiences.

Woman misdiagnosed for 30 years

and her blog: www.jeanabbott.com.

It's so good to see this information out there. Dealing with Parkinson's is one thing. People understand what it is, to a degree, or at least they've heard of it. While I definitely have Parkinson's symptoms, dystonia has always been my major challenge. It's a lot harder to explain. It's harder enough to explain that I told my neurologist I wasn't interested in having a DAT scan to confirm my PD diagnosis. She understood. She said she only had one other patient whose symptoms were close to mine. With PD, there's a huge community out there. With Dopamine Responsive Dystonia (DRD), I'd be a community of one.

Except between the hours of 1 and 5 am when the Insomnia Club meets.

Oh, and before I go, there's another aspect of Dystonia which I find most frustrating. There is a type of dystonia which is called Functional Dystonia and is considered to be psychogenic. I know this is real and I don't discount it at all, however, in one case I know, a woman was denied her treatment when her doctor decided it was all psychological. As women are diagnosed with dystonia 3 times more frequently than men and, we women know doctors (at least in the past) have been quick to attribute our symptoms to anxiety, depression, and just being female, I just get a little suspicious when I hear about it.

In looking up information about psychogenic dystonia, it seems the docs have gone back and forth between considering all dystonia to be psychogenic or all dystonia to be organic. Now, there's a blur between them and that's all right. I suspect there's some psychogenic and organic elements to nearly all physical challenges. 

Which brings me to another wonderful article by Tom Seaman:

Dystonia and the Highly Sensitive Person

Please wait till the ride comes to a complete stop

"Bienvenue! Willkomen! Croeso! Welcome to the new triple loop roller coaster! Please take your seats, make sure the safety belt is fastened properly and the safety bar is secure. Keep hands and feet inside the car at all times and do not attempt to exit until the ride comes to a complete stop. Enjoy the ride, folks!"

I braced myself and already felt a little queasy. It was anticipation, I'm sure, but my tummy wasn't listening to the voice of reason. It was listening to the ride operator... and the ride operator was simply my brain's translation of the far more reasonable voice of my doctor saying, "I wrote you a prescription for a new medication."

My usual response of "How normal do I have to be?" didn't work this time. After several recent experiences with headache, nausea, dyskinesia, and full dystonic storm hitting all at once, I wasn't in a position to argue. Being a wee bit testy, I let her know I wasn't thrilled about adding any new drugs, but I'd be a good patient and do whatever she wanted me to do. Grrr. I didn't have to be happy about it. 

The next morning, I took my regular meds and my new one, got on the roller coaster and hung on tight. Who knew what thrills and chills awaited me? The ride promised at least some relief from dyskinesias, the rolling-won't-stop involuntary movements often associated with having been on levodopa for a number of years, and extend the time when my regular meds were "on".  I already knew the twists and turns on this ride could include purple blotches on my legs and ankles, weight loss, and dizziness. So far, it sounded not unlike a few of my rides on old wooden roller coasters when I was in high school. My husband was on standby in case anything went wrong.

Mostly I wanted to make sure I kept breathing. Like I've said before, my docs know I'm somewhat paranoid about drugs. I'm ultra sensitive to most of them. And when I mean ultra sensitive, I mean like, my docs may seem to take me seriously, but it's only when they see for themselves what can happen, that they suddenly look panicked and proclaim me the most medication sensitive person they've ever seen. 

Yeah. I got it. 

So, back to the ride: husband on standby, bracing myself....

I fell asleep.

All that anticipation. All the nervousness, nailbiting, and worry. I slept for 2 hours. Then I got up, spacey, a little dizzy, and wandered, unfocused, around the house for awhile. Then I fell asleep again. Fortunately, husband on standby had also thought to make a big pot of stew in the crockpot earlier in the week. I didn't have to make dinner. Wasn't hungry, either. After a little stew broth and some bread and butter, I took another nap before going to bed. It hadn't been a very exciting ride.

That was yesterday. I only took two real naps today - and a short cat nap. The rest of the time I've felt scattered and bored silly. Not enough stamina to do anything, but tired of being scattered and tired of sleeping away the day. We'll see how my body adjusts over the next few weeks. My doc says to be patient. I said something else. 

In the meantime, I'm fairly easy on my husband. I sleep a lot and don't eat much. I'm not the best company, but at least I don't scratch up the furniture and I don't shed.

The ride's not over yet.