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

Drafted

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 cry or not to cry - that is the medication

While Parkinson's disease can take away so many of our abilities, there are other skills it seems to enhance. The ability to cry is one of them. We can cry in any situation, any place, in front of anybody. We can cry while watching comedies or commercials, listening to a lecture on mathematics, or seeing a cute puppy. 

My natural skill in this area was advanced anyway. After my diagnosis, I could have been a superhero, if crying could be considered a super power. Unfortunately, crying has not yet been accepted by the Board of Animated Mutants (BAM), Panel Of Weird Writers (POWW), or even the Board of Associated Super Heroes (BASH). Yes, it remains, to this day, an unappreciated skill at which I am embarrassingly talented. 

Until recently when a change in medication took me from Kwazy Wabbit mode to embracing The Way of the Tortoise. 

There were a few odd things that came along with this medication change: dry mouth, throat, nose, and eyes... and nightmares. I didn't notice all the changes right away. I was moving so much slower and my nervous system had calmed down to where I wasn't reacting so strongly anymore. Little did I know, it had also taken away my one and only superpower. (Okay, that's an exaggeration. I still have my ability to turn into the Human Torch every time I get a hot flash. Yup. They're still hot enough to roast marshmallows.)

Last week, a dear friend of mine died. I was sad, but I didn't cry. I didn't cry when I was told or when I read the obituary. I didn't cry at the memorial, even when they played a song my friend had once sung to me. Usually I feel embarrassed when I cry. On the day of the service, I was horrified! What a terrible friend I must be to not even shed a tear! I pulled out a kleenex and dabbed at my eyes, pretending I was tearing up. There just weren't any tears. 

This upset me enough, I came home and emailed my neurologist, asking if this could possibly be happening because of my new medication (Amantadine). She wrote back, starting with "My, you ask the most interesting questions". After she researched a little, she found this indeed could be an effect of the meds. The timing is right.

I'm not going off the Amantadine, but I'll try to stick with a low dose. Without it, my dystonia can decide to run the show. The Amazing Pretzel Woman is not among the accepted Super Heroes, either. It's weird to know my ability to cry can be changed by a medication. Even if I can't change this, it's good to know there's a reason for this mystery.

And, at least I don't feel like a terrible friend anymore. 

Friends to Look Up To

I wrote this article in 2008 after a visit to these two special friends. Yesterday, I lost my Buddha friend. Mike lived longer than most people do after such a severe accident. Though I hadn't been able to spend much time with him over the last year or so, I am so, so grateful to have known him for awhile. He was a gift to everyone who was lucky enough to be around him.

I'm still working on growing up and still hope I can be like these two wonderful people.

***

Stopping in to see my friend, Carolyn, she greeted me and immediately asked how I was doing. “Bill told me about your Parkinson’s,” she said, “That is so awful. How are you feeling? How is Chris taking this? I can’t believe you drove all the way up here just to see us.” She then asked about our kids and wanted to know all the news. She expressed her concerns for how we were doing financially and said she’d pray that my disability benefits would be approved right away. I responded to Carolyn as I try to respond to everyone. It’s hard to explain, I say, but my Parkinson’s has really been a gift to me as much as anything else. Carolyn got it. She looked at me and said, “I know what you mean. People look at Bill and I and think that our situation is awful. But they don’t know the blessings we have every day.”

The next day I went to see my good friend, Mike. He greeted me with a smile and a hug, made sure I had something to drink, and then we sat and talked. As we were in elementary school together, a lot of our chatting is about “old times”, people and places we knew when we were younger. We both enjoy music and sometimes we sing the old songs together, remembering the Beatles, Herman’s Hermits, Gordon Lightfoot, and others. We talk about movies and laugh about our favorite humorous scenes. More than anything else, we laugh together. While we were visiting that day, Mike turned to me and said, out of the blue, “I am so lucky!” And indeed, he seems happier and more content with his life than most people I know.

I thought about these two friends of mine the other day as I prepared even more paperwork for my disability files and pondered this rather daunting experience of applying for benefits. Mention that you aren’t working and are thinking of applying for disability, and usually you hear instant judgments. Our society seems to want us to feel as though we are cheating somehow if we are not able to be gainfully employed. It took me a long time to feel okay about doing this and it was only after my doctor insisted that I needed to start this process that I actually made my appointment with social security. I certainly wasn’t helped by the lawyer who let me know that he’d “eat his revolver” if anyone told him that he had something like Parkinson’s disease.

Contemplating the possibility of having a progressive illness is scary. I will admit that! But I have learned that even illness comes with its own gifts. It’s not so hard for me to see the gifts of my Parkinson’s. Life is slower. I have more time for people. It’s easy to let go of things that don’t really matter anyway.

And my friends?

Carolyn is paralyzed, a quadriplegic from having polio at age six. She is totally dependent on others for all of her physical care. When I came to see her, she had been confined to bed for over a week because her electric “sip and puff” wheelchair was broken down and the repairman had been delayed. When she is back up and ready to go, I know she’ll again be taking care of the other residents in the apartment complex she lives in. She’ll be ordering groceries for one client and arranging transportation for another. She’ll be up at her table, working on her computer and painting beautiful pictures, holding a paint brush in her mouth. And she’ll be much more concerned about the welfare of others than in her own challenges. Her partner, Bill, also uses a wheelchair, has cerebral palsy and is developmentally disabled. He cooks for Carolyn, manages a small store, and takes care of his garden.

Mike was a fireman and paramedic before an accident left him paralyzed on his right side and with a brain injury. His short term memory is impaired. He cannot sit up unaided and it is hard for him to hold his head up for any length of time. Speaking is difficult and even such things as breathing and swallowing are not to be taken for granted. He, too, is totally dependent on others to care for him. But I have never left his house without feeling like I was the one who was taken care of.

I have seen Caroline go through devastating health crises when she wouldn’t be expected to live through the night. I look at photos of Mike from before the accident and feel that I have suddenly been punched in the stomach. If I could change what happened to them, I would do it in a heartbeat. But I can’t. So, I live with a very particular struggle because, though I wouldn’t wish this on anyone, it is only because of their disabilities that I have had the opportunity to know them now. And I can’t imagine not having them in my life.

When I grow up, I want to be like Mike and Caroline. 

A Virtual, but Real Community

Like many people nowadays, I have two distinct groups of friends: those I know in person and those I know only through online communities. Some may debate whether online friendships are as valuable and real as face to face friendships. 

Besides Facebook, which I think of as more of a small town newspaper than a community, I have been involved in several online support groups and have cruised through a number of others. I'm picky. They can have their plus sides and their not so pleasant sides. 

On the plus side - you can participate as much or as little as you want without anyone asking you why you are so quiet. They don't know you're there. The down side - Unless you participate, no one knows you're there.

On the plus side - as you don't generally see these people face to face, it can be easier to say what you really think. The online group allows people some anonymity. The down side - Anonymity can allow some people to feel free to be loudly judgmental or mean.

Never Give Up - Parkinson's and Dystonia - is one of the good ones.

Any community, whether online or in a neighborhood, is only the sum of what everyone contributes. I've been in support groups where arguments break out and people start taking sides and it escalates into something that doesn't feel much like a support group. And I've lived in brick and mortar neighborhoods where the residents are less than neighborly. 

What would happen if you took one of these online groups and brought everyone together so they could meet face to face? 

It happened last weekend. The Parkinson's Vitality walk in Denver was on Sunday and the Never Give Up Parkinson's and Dystonia Facebook group decided they were going to have their first ever meet-up. Not all the group came, but there were over 40 attending, from 30 different states. In person, face to face. There were lots of hugs. Unfortunately, I wasn't able to go to the walk, but I did make the meet-up at Old Chicago Pizza.

I hadn't been in the group long, so I felt more like an observer. And what I observed was a group of people who truly care for each other. 

Never Give Up - Parkinson's and Dystonia - is one of the good ones. It's easy to tell. While the overall feel of the group is incredibly positive, no one is telling us as individuals that we have to BE positive in any one moment. That's huge. The pressure to have to be positive can be incredibly stressful and that's not supportive. To allow people to be where they are at, while at the same time maintaining an overall supportive positive atmostphere, this is an gift to its members. It means we feel we are heard and understood. We can take a breath and, suddenly the world is a more beautiful, positive place to be. 

Meeting some of this group in person, I can honestly say if I'd not known they had only met online, I'd never have guessed. It was obvious to this bystander that these folks have known each other since childhood, have watched all their kids grow up together, and helped each other painting their barns and houses. They hadn't, of course, but that's the only way I can describe the feeling in the room as everyone greeted each other. 

Oh, and I won a donut award. I can't remember what it's for, but it makes me smile because it's named for Keith, aka Uncle Donut, who makes us all smile and laugh with his home videos. Everyone wanted to get their picture taken with him. Being new, I was a little shy about asking him, but they're coming back next year. I'll bribe him with a Krispy Kreme.

A big, big thank you to the founder of this group, Erika Snider-Jimison, and her admins: Denise Klobe, Diane Chabiel, Kristin Snider, Tina Aubuchon, and Keith McCoy. 

To the Dogs - who help us and love us

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

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.

The Way of the Tortoise

Earlier this year... I came home from running errands for my parents and stopping for tea with a friend and looked through our little free library by our house. We enjoy seeing neighbors and other passersby stop and pick up books. Often, people leave books, too. This day, there were a number of new children's books, including The Tortoise and the Hare.

I've always loved the story of the tortoise and the hare. I identify with the tortoise. He might be slow, but he's determined and focused on where he is going. Yup. I'm the tortoise. Slow and steady. Someone who is dependable. 

Yup, that's me. 

I brought the book into the house with me and set it on the desk so I could read it to the grandkids. Then I put the kettle on, started fixing some lunch, went out to get the mail, chatted with our neighbor, remembered I needed to give them some eggs, went back in to the kettle, which was whistling loudly and sputtering, took the kettle off the stove and finished making my sandwich. I suddenly realized my neighbor was waiting at the door for her eggs. I dashed off with the eggs and an apology then returned to sit with my tea...and book.

Good old Tortoise kicks Hare's ass and wins the race while Hare is hopping here and there, stopping in the meadow to have coffee with his cousin Rabbit, taking a quick nap or two, and dashing over to the store to buy some lettuce and carrots for dinner. He's so busy, he forgets all about the race and, when he remembers, he's already far behind.

Wait a minute. I sound more like the hare. I don't want to be the hare. I'm the tortoise, right? No? Damn.

This spring... Medication change. It's a good change as it prevents the awful dystonic storms like the one that landed me in the Emergency room a few months ago. It's also hard to get used to. I feel heavy.. and slow, both physically and, to some degree, mentally. I can do one thing at a time. If I try to do more, I fail miserably, but I'm not too motivated to try. I feel as though I am carrying a heavy weight. I keep going all day, slowly. I get things done, slowly. If I want to say something, I have to think about it for a while first. I feel like I'm going crazy.

Um... I am the tortoise? Damn. 

I didn't realize how much I was enjoying being the hare. If it wasn't for the fact this medicine really works well without too many weird effects, I would talk to my doc and go off, but I know what I have to do:  learn the way of the tortoise.

Will the heavy slow effects of these meds lessen in time? Can I learn to be a successful tortoise and be the dependable wife/mom/friend I want to be? 

I've always believed that medications are the biggest challenge we face when we have a chronic disorder. If the odd, non-marketable effects weren't enough, there's the challenge of wondering who the heck we are.  Am I a tortoise or a hare? Am I an extrovert or an introvert? Am I happy and positive or depressed and negative? If I'm a tortoise, am I still me?

And the real question is: What is me, the real me, and what about me is just simply due to the chemical changes in my brain and the medications? 

It's not an easy question when you're at the mercy of medications that affect the brain. At one point, I read on a Parkinson's website about how impulse control disorder is a part of PD for many people. It's not. It's an effect of the drugs. Asking about DBS surgery, I admitted my fear of the surgery is due to the possible effects of personality changes and short term memory loss. I was told I was being unreasonable because short term memory loss and personality changes eventually would happen with Parkinson's anyway.

Huh? Even if this is a valid statement, and I don't believe it is, the concern remains. Why risk hurrying that along?

Methinks we're just prone to identity crises. We have had to give up jobs and change the way we live. Some lose their spouses who can't handle living with someone who has PD. Not all of our friends like to put up with us as our health and our meds change. WE don't always like to put up with ourselves as our health and our meds change. We all struggle with the question of who we are and what can we do that is meaningful. 

This last week, I received part of the answer, sort of, anyway. Regardless of anything else, we are the family our children and grandchildren and my parents can count on.  No matter what, I am still Mom, Grandma, daughter, wife. 

And Tortoise. Can't forget the tortoise. 

When does a Hiccup become a Kerchunk?

Having a diagnosis of Parkinson's disease means learning a lot of new terminology. Some we learn from our neurologists. Some we learn on our own as we go. Here are a few recent additions to my new vocabulary:

Hiccup  /hik' əp/ noun -  an off day. An irritating, but temporary new symptom or the return of an old symptom that usually is managed well with medication.

Ripple  /rip' əl/ noun  -  a hiccup that lasts more than one day, often blamed on stress as in "the ripple effects of driving elderly parents to three doctors appointments and a shopping trip in one week."

Kerchunk  /ker chəNK'/  noun  -  a hiccup that turned into a ripple that never went away. The feeling of missing the bottom stair and landing hard on to a new normal.

One of the benefits of having a chronic health challenge is we have somewhere to lay the blame for every little quirk, clumsy moment, or forgetfulness, ie, hiccups. This is valid for many things. Tripping and dropping your spouse's favorite coffee mug could honestly be attributed to PD. Not being able to come up with your second cousin's wife's name even though they lived down the block from you fifteen years ago is also valid. Throwing up after a night of drinking? Probably not.

When we're in the middle of a hiccup, there are a few things we can ask ourselves to eliminate other possible causes: 1. Could it be a bug? It's good to know what is connected to PD and what might be something contagious. 2. Is there blood gushing anywhere or severe chest pains? These are not connected to PD and you might just want to call an ambulance. Now.  3. Did you go out drinking with your second cousin last night?

If, after a thorough self-evaluation, you decide this is definitely a hiccup and not a life threatening emergency or a hangover, now it's time to wait. Think positive. It's a hiccup, it's only a hiccup. Tomorrow is a new day. 

Two weeks later, it's still there. Is this a lot of hiccups or did it turn into a ripple? Got to be due to stress. Just wait till everything calms down and the ripples will slowly ripple away. Meds don't work as well when we're stressed. I tend to give it a few months to even out. Uh... make that 18 months. I like to think positively.

At some point, it's a positive move to stop trying to use positive thoughts to convince ourselves it's still a ripple or a whole lot of hiccups, especially if the hiccups are multiplying and the ripple looked more like a tidal wave. My thoughts were so positive, I convinced my doc it was just a tidal wave sized ripple. At least I think I did... maybe.. when I finally called and let her know I was ready to admit that all the hiccups in my ripple were actually a kerchunk, she had already called in the new prescription. 

On to learning how to live well with the new normal. It's not so bad, once you've landed on your feet. The kerchunk seems to have scared my hiccups away, too. 

Or maybe that's just the new meds.