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My Parkinson's Journey

In which Terri shares a humorous look at her journey with Parkinson's disease and Dystonia:

For me, illness and health are not opposites but exist together. Everyone has something that is challenging to them. Mine just simply has a recognizable name. My life will take a different path because of this but that's okay. Everyone has changes in their lives that create their path.  I'm learning how to enjoy whatever path I'm on.

Filtering by Tag: Parkinson's Disease

In Fits and Starts - Getting things done the PD way

Terri Reinhart

I'm waiting for my next dopamine surge. 

We folks with Parkinson's disease know all about dopamine. We know what happens when we don't have enough and we know what happens when we have too much. We also know there isn't any such thing and having it perfectly balanced. So, when we want to get things done, we play the dopamine game, otherwise known as doing things in fits and starts. 

Wake-up! What kind of day is today? Is it the slow motion, not gonna accomplish much today sort of day or is it the ohmygodIfeelgoodtodayandIamgoingtogeteverythingdoneonmytodolist sort of day? Okay, in general we may tend to be more the tortoise or more the hare, but day to day is a different story. How our dopamine system is doing and how it will all work with the medications can result in a roller coaster ride between dopamine surges and dopamine crashes.

This is because a lot of things affect how our dopamine system works. It's not just the medications. If we don't sleep well or if we're under a lot of stress, the meds are not going to work as well and it's not going to be easy to stay motivated. Did something exciting happen? How much caffeine have we consumed? Sometimes we don't know what the heck is causing our dopamine levels to fluctuate more than the prices of gasoline. 

We do know what this means in a practical way. 

A dopamine crash is easier to understand. We know we're going to feel lousy some days. No energy. No motivation. We'd procrastinate if it didn't take too much work. It's the day when we say, "I have Parkinson's. You can cook." 

A dopamine surge is when we expect everyone to stay out of our way, thank you very much, because we're going to Get It Done. It's kind of like an adrenaline rush, but without the racing heartbeat. It's more of a racing brain: "I think I can I think I can I think I have a plan.... I think I can rewire the light in the bathroom and replace the medicine cabinet  - myself - and then build a patio  - today - now". I like projects anyway, but during a dopamine rush, I like BIG projects.

bathroom.jpg

I suppose it would be better for us to pace ourselves. Working for a shorter time everyday would help us to avoid a few of the hills and dives of the roller coaster. If we'd pace ourselves really well, we'd get things done, maybe, and not wear ourselves out to the point where we crash. I think. 

On the other hand, a dopamine surge can be a lot of fun as well as being productive. I haven't gotten the patio done yet, but I'm pleased to say I rewired the light and put up two cabinets and a new towel rack in Emma's bathroom. It took three days, several trips to Habitat Restore, and a mad dash to the Ace Hardware store where, 20 minutes before closing time, a clerk found what I needed and gave me a crash course in what I needed to do. He made sure I remembered everything so I could repeat these instructions to my husband. Sigh. 

That was 5 days ago. I'm glad it's done because I used up all the energy I had stored up. We're having pot pies for dinner. I haven't accomplished much of anything today, but that's okay. I'll save my next project for my next dopamine surge.

Was that a ....? Never mind.

Terri Reinhart

There are a lot of places where dogs are allowed to visit nowadays, but hospital infusion centers are not the likeliest places to see someone in a wheelchair with a poodle on their lap. It worried me. Had I really seen this? Sure, the poodle could have been a service dog, but .. well, how many service dog poodles have we seen? I turned to my daughter. Dare I ask? 

There's a new commercial out about Parkinson's disease. It's presented as an awareness ad; awareness of the lesser known symptoms of hallucinations and delusions in Parkinson's. The ad is very emotional, and I understand because these symptoms can be frightening, but it's also stirred up quite a lot of mixed feelings within the Parkinson's community. I mean, come on! It's hard enough to feel confident socially. Now you're going to blast it to the world that we're seeing things? The ad doesn't start explaining delusions, but just the word... it doesn't sound good. 

And that's part of the problem. As soon as we hear of the possible issues that can affect our thinking, we immediately want to say, "but that's really rare. It doesn't affect most people", and by that we mean, "not me". What we also mean is, "dear God, please not me". All sorts of our culture's worst insults come to mind, especially as they're being used often by and about people in politics these days: crazy, loony, lame, insane, idiot, screw loose, mad, demented, mental, or sad. The stigma of mental illness is often more damaging than the illness itself. When there is such shame attached to any health condition, it makes it much more difficult for people to ask for help.

Okay, with this in mind, having an awareness ad about hallucinations should be a good thing, right? By the way, this ad is put out by a drug company. Oddly enough (or perhaps not so oddly), the ad doesn't mention the fact that a lot of these symptoms can be caused by certain Parkinson's drugs. There's no suggestion to have your doctor evaluate the meds you are already taking. The patient in the ad is portrayed by an actor. The sound effects and music are eerie. The whole feeling is one of sadness and fear. But they tried. They are honestly trying to bring awareness to these symptoms, the symptoms we don't want to talk about. And sell drugs. Let's be honest. They're marketing their product.

So how can we bring awareness to this type of issue without portraying the person as sad and suffering and dependent? ... without portraying these issues as a tragedy? Could we provide a somewhat more positive picture? When my able bodied friends see a commercial like this, I brace myself and get ready to hear their condolences on having this horrible, tragic illness that has obviously robbed me of having any sort of a normal life. 

Would someone like to stand up and tell me what normal is? 

On the other hand, there are those typical drug company commercials which show beautiful, cheerful, active adults swimming, climbing mountains, taking their grandchildren to the park... and hey! They are beautiful, cheerful, and active because they take this drug! All the while, of course, you hear the narrator speaking as quickly as possible describing all the possible side (ie: non-marketable) effects of this drug and all the ways it can kill you. Let's not go there.

I hallucinated once - only once that I know of. I was in a restaurant with my grandson and I watched a family come in. Someone was pushing a stroller that had a doll in it and someone else was holding a chihuahua in their arms. A couple adults took turns holding the baby doll. Why would anyone bring a chihuahua into the restaurant? And, putting the dog in the high chair? I said something to my grandson and he looked at me and laughed and said, "Grandma, you're silly!" That was my first clue that just maybe my brain was playing a few tricks on me. Will it happen again? I was relieved when I finally asked Emma about the dog I saw at the infusion center. She had seen it, too. Someone really and truly had a service poodle.

What do I need to know about hallucinations? The one I had was right after starting on new medication that gave me insomnia. I've since talked to others who've had hallucinations when taking that particular drug. My experience with hallucinations was startling, not scary. All the same, it took awhile before I told anyone about it. Had I seen this ad right after my experience, I would have totally freaked out.  

While I don't have THE answer, perhaps it's time to let a group of people with Parkinson's create these ads.

chihuahua-666413_960_720.jpg

But it's just a headache!

Terri Reinhart

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.

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.

 

 

Drafted

Terri Reinhart

It's been difficult to find time to write lately and even more difficult to figure out what to write about. So, I looked through all the drafts of articles I've started and thought perhaps they could inspire me to do something new. Sometimes I come up with a title and nothing else.

Here goes:

Armchair Reactivist: My intentions were good, not just because I wanted to write an article, but because I wanted to be a real political activist and get involved with our city politics. I went door to door gathering signatures on petitions and later, went door to door again to deliver leaflets for our city counselor's election. 

My stamina being not so great, I decided I was better at being an armchair activist, or, when it comes to social media, an Armchair Reactivist. Being a reactivist isn't nearly as productive or useful as being an activist and it has sometimes gotten me into awkward spots. I'm sure there's a lot more I could write on this subject. If I finished, it would be deep and scholarly and point out all the ramifications for our society.

Tomorrow, Tomorrow, I'll do it Tomorrow:  I decided this was the best title I've ever come up with for an article that has never been written and probably never will be, like the one above. The fact this has also been my mantra for everything over the last six months or so makes it an even more appropriate title. Catchy, isn't it!

It's Enough: This follows the other two. I can't remember exactly what I had in mind here, whether I'd had enough or whether I had to decide what I was doing was enough. It could be either, depending on the day. 

It's back there in the gray matter somewhere. We need to simplify, really simplify and not just give it lip service. This doesn't just pertain to stuff, though there's a lot of stuff needing to go, it's also how we live. My medications, over the years, have either sped me up or slowed me down. Finding a middle ground hasn't been easy, but at least I know now I don't have to try and cram as much living into my days and weeks as I possibly can.  If we go slower, do less, we experience more. And that's enough.

Labels and Identity: This was going to be one of those really important articles which would go viral on the internet and, maybe have 4 or 5 people actually read it. (For me, that's viral) This is something else I've been thinking of a lot. 

When I was in high school, we liked to talk about how we didn't want anyone to label us. Working with children who had disabilities and challenges, labels were often what helped get help for a child. Sometimes a label helped with funding. I'm also involved with our LGBTQ community. They have recently added more labels - LGBTTQQI2SA. This might look awkward and seem a little bit label heavy, but I get it. These labels are helping people understand their unique identity. I wish these labels had been around for friends in my generation.

What I remember from working with child observation is: you can have labels that help free an individual or labels that box them in. The most important label is: This is a unique and uniquely beautiful human being. Know the others, then forget them.

There's so much more on this subject, it needs to be a whole book. Someone else can write it. 

And after all this, I'd undoubtedly summarize all of my thoughts into a wise, but witty ending paragraph, bringing everything together. I'd probably connect these ideas to the experience of chronic health challenges and try to say something inspiring. Instead, I'll just copy and paste and tweet about it.

Tomorrow.  

 

 

 

To the Dogs - who help us and love us

Terri Reinhart

Those who know us and those who read my other blog know we have gone to the dogs. To be more precise, we've gone to the chihuahuas, which is something I would not have ever, ever imagined. Considering the care giving tasks I've had to take on in the last few years, bottle feeding a litter of 4 chihuahua puppies was something I didn't need at all. And yet, we did it anyway and it's been incredibly therapeutic for all of us.

I never thought dressing chihuahuas in cute t-shirts would be part of my life. In fact, I'm sure I've scoffed at the idea more than once.

Dogs are our companions, work partners, and family pets. They are service animals, helping guide those who have limited or no vision, alerting hearing impaired people to alarms and doorbells, opening doors and turning on lights for people who use wheelchairs. Dogs are specially trained to alert people of seizures and calm someone with PTSD. There seems to be no end to what dogs can be trained to help us do.

Harpman, Hank, and the Spirit Guide

Then there are those who have natural talents. Hank the Cowdog is one of those dogs. He is the best buddy of Tom Kemper. Tom has Parkinson's disease. Hank catches frisbees. What happens between them is magical. Along with some friends, he has created a documentary about their relationship.

For the month of June, he's allowing us to watch it free. Here's his info:

Click on the link:   Harpman Hank and the Spirit Guide   This link takes you to the film's website. Click on the purchase button. At 'Checkout' you'll be prompted for the discount code. Enter: PREMIERE. You can follow the same instruction for both the movie and the soundtrack purchase. This promotion is valid through June 30, 2016.

When you receive your purchase receipt email, it will give you the password to see the movie on Vimeo. Do it. The soundtrack is beautiful. The story is delightful and inspiring. 

Hank the Cow Dog

Hank the Cow Dog

It's also a reminder that not all dogs have to be specially trained in order to be therapeutic for their owners. Granted, I'm incredibly impressed with the work being done with Great Danes as service dogs to people with Parkinson's. The Danes are tall enough and strong enough to brace themselves and help their owner regain their balance or stand up from a chair, among other things. The work of a trained service dog is invaluable to its owner. 

Our little chihuahuas are not nearly big enough to do that and they never will be, so what might they do as therapeutic dogs? If nothing else, they make me laugh and that's wonderful therapy.