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.

Irregular Doctor, Injured Neurologist

It was a dark and stormy night. I always wanted to start a story this way. Of course, it was only dark outside and the storms were all inside, a result of my dystonia, but it still works.  

Yesterday, I ran errands for my parents all morning. I picked up their prescriptions at Kaiser, over the counter meds at another store, made phone calls, delivered all their meds to the nurse at their facility, and visited with my folks for awhile. I knew I was on the edge because my Parkinson’s meds hadn’t been working well for me for a couple of days and I had woken up with a bit of a headache. But, my parent's medicines needed to be picked up and delivered.

By the time I got home at 2, my head was pounding and I was a little queasy. So, no lunch for me. I made some chamomile tea and sipped it. It just made me more queasy. I went to bed, but couldn’t get comfortable. There was no way I could take my Parkinson’s meds when I was having to trot back and forth between bathroom and bedroom all day. About 5 pm, my dystonia took over and by 8, the pain of the headache and queasiness combined with total body dystonia was more than I could handle. We were off to the ER. By the time we got there, my arms were twisted and pinned to my chest with muscle spasms and my legs were twisted and crossed and my feet were curled up with painful cramping. I was hyperventilating and dehydrated and in full dystonic storm. It took two men to pick me up and put me on the bed.

Long story, much shortened (8 hrs in ER), I was pumped full of various drugs, the combination of which caused me to suddenly have severe restless, jumpy legs. More drugs. Finally started to settle down and we got home at 3:30 am. By then I could walk, though I was very shaky and dizzy from the meds and from my involuntary triathlon – headache, nausea, and dystonia. At least I got a fairly decent involuntary abs workout. Thankfully, these ER docs seemed to be very knowledgeable about dystonia.

Dystonia is hard to explain. Much of the time, I look sorta kinda normal - or at least my normal. Other times, my arms or feet will twist and cramp. It's the Twist and Shout part of my Parkinson's.  A major whole body episode of dystonia is called a dystonic storm. When certain things start lining up, ie: needing sleep, too much to do, eating the Oreo cookies and chocolate bars my dad loves to give me, and waking up with a headache, I have to be very careful. This is the time when I'm most likely to have more Parkinson's symptoms and I'm more at risk for having one of the dystonic storms take hold. Pacing myself is never easy.

I’m still shaky today and so, so grateful for my husband, who put on his caregiver hat and took care of me all night.  He got less sleep than I did.

As a funny side note, the medical report must have been transcribed by some automatic voice to text program. It told me to “follow up with irregular doctor injured neurologist”. It took me a few minutes to figure out what it meant! I told my irregular doctor and injured neurologist not to take it personally.

Toolbox: Communicating with the Medical World

Communication: understanding others and being understood is one of the most wonderful aspects of being human. A dog can't go in to the vet and calmly explain to the doctor that he has a burning pain in his back left toe (3rd from the right) and has been craving cat food. We humans are the ones with advanced language skills. Why then, is this so difficult?

Part of the problem is our brains have to translate the speech we hear into something of meaning and our brain translators are not much better than the online language translators on the internet. The difference is a computer cannot take facial expression, body language, and tone of voice into consideration. We, on the other hand, take all that and more into our language interpretation center where it is sifted through our experiences, our prejudices, and the traumatic time when we threw up in the middle of our third grade classroom.

I'm sure there are people who have no problem at all with communicating, whether it be with their families, coworkers, neighbors, pets, or any alien species who happen to be visiting. I am in awe of these people. Most of our attempts fall into one of these categories: a) I'm afraid I'll say something stupid  b) I'm sure I must have said something stupid  or c) as usual, I talked too much. These are exact quotes from friends after a recent social outing. 

And this is just in our everyday encounters. When we are trying to communicate our health challenges to our doctor or dentist or emergency room nurse, our ability to communicate effectively can make a huge difference. Before we even begin, our expectations and assumptions can create barriers. Are we going in assuming our doctor won't take time to listen? Or will talk down to us? Do we get intimidated by medical professionals? Do we trust our doctors? It's good to recognize the barriers we bring with us.

What do we want our doctors to know about us? What do doctors want us to know about them? I have compiled a basic list. From the doctor's side, it's a compilation from articles I've read and asking doctors.

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Patients

I am more than a bundle of symptoms - I am a whole person. I have a biography. I have interests and talents, family and friends. And a sense of humor.

How you see me today is how I am today.  This is so true with PD. If I'm having a good day, will the doctor believe me when I tell them of my challenges? If I'm having a bad day, will they think I'm always like this?

I don't need to be made perfect.  Let me know what can be helped and what can't. I know treatment doesn't take away 100% of my symptoms.

Do you realize you treat me differently depending on how well I am able to speak?  This is my pet peeve, but I realize it's also a natural reaction. If my speech is slurring or hesitant, my docs have talked down to me. It's subtle, but noticeable, and totally unintentional. If I can speak well, my docs speak to me more as an intelligent adult. Do I do this to other people? Something to think about. My first neurologist tended to speak down to me a lot. I was a bit of a mess while trying to get my meds stable. Another patient showed her my blog articles. Suddenly, her attitude toward me changed drastically and she treated me more like a peer. 

I want my doctor to respect me.   I know my body and, while I want to listen and trust my doctor's knowledge, if I tell my doc about a reaction to meds or that I don't want to try a certain treatment, I want them to listen to me and believe me. 

Doctors

I wish I had the time to really get to know each patient.  Doctors often have very large caseloads these days, not because they are greedy, but because a lot of people need to be seen. This is especially true with specialists.

If you aren't taking your medicine (or my advice), please tell me.  We can talk about it. How can our doctor know if we have the right medicine if we stop a particular drug because we didn't like the way it made us feel? If they think we're doing everything they told us to do, and it's not working, our docs might conclude we need stronger, more aggressive treatment. At a patient panel at our School of Pharmacy, all 5 of us patients on the panel admitted to not always taking our medication the way it was prescribed. Not necessarily bad, but absolutely we need to talk to our docs about it!

Pain is difficult to treat. Anxiety is difficult to treat. There isn't a magic medication.  It's easy to become addicted to drugs used for pain or anxiety. While drugs are often necessary, a good doctor will also help you find resources to learn tools for coping with pain and anxiety.

I want my patients to trust me.  Building trust can take time, especially if we have had negative experiences in the past with Dr. Payne and Dr. Hertz.  Remember, your doctor is a whole person, too, with their own interests and talents, their families and friends. Most doctors are passionate about their work and are there for you.

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Considering all this, how do we effectively communicate with our doctors and give them all the information they need? One way is to write everything down and be as organized as possible. If I can do it, anyone can. I'm organizationally challenged. The benefit is that your doctors will be impressed with just how organized you are and impressed because this saves them a lot of time. Conversely, trying to depend on our memory to report how we're doing can lead to finding this on our medical record: "Patient reports she has no cognitive issues, however..."

Before your appointment, write out your questions and concerns. Keep track of the symptoms that are bothering you so you can let the doctor know how often and when they happen, and whether there is any variation in the severity. Have the receptionist make a copy of this and attach it to the outside of your chart. This way, your doctor can read the details even before he/she comes in to see you. 

If you have a good friend or a family member who is willing to come, it's good to bring them along to be another set of ears. They can take notes and perhaps even think of questions you don't. 

Trust yourself! Even if we walk a little awkwardly and slur our speech, even if our face is a mask and shows little expression, even if we shake and our arms go every which way and we have a tendency to walk into walls, even with all our challenges, know that what you have to say is valuable and interesting. Try believing this, even for one appointment. If we believe it, others will, too.

Bizarre Medical Conditions R Us

Dystonia is on one of those internet lists. You know, the ones you look at when you're bored and you've already lost three games of solitaire and, while you have dishes to do and plenty of other obligations, you just aren't ready to do anything productive. After seeing Dystonia on a list of bizarre medical conditions and reading what they say about it, I'm a bit skeptical about the quality of their information. In addition, the photos that go along with the descriptions show the disorders at their most extreme. It's just more sensationalist journalism turning medical conditions into a freak show.

This is what one list says about Dystonia: "A rare disorder, individuals suffer abrupt twisting motions whenever their muscles sustain any contraction." It goes on to spotlight the case of a young woman whose medical condition was not typical dystonia and may not have been dystonia at all.

Of course, some of the bizarre conditions have cool names: alien hand syndrome, Alice in Wonderland syndrome, or my favorite - Jumping Frenchmen of Maine syndrome. My neurologist actually suggested the possibility of the last one for me because my startle reflex is pretty crazy. Secretly, I was hoping for it because when I'd tell people, they'd be far too busy trying not to laugh to feel sorry for me.

We don't need sensationalists to remind us how bizarre our medical conditions can be. On one of my support groups, people often post questions which start out as "Do any of you go through THIS?" With dystonia, however, we don't start twisting with every muscle contraction. It's trickier than that. Sometimes we can move quite well. Walking backwards is not necessarily easier than walking forwards, either. I do much better going sideways and doing the grapevine.

A little while ago, a friend of mine posted a question on Facebook: "Anyone else bored?" Though I realized she was referring to a less than thrilling Academy Awards program, at that moment, I was anything but bored. I was trying to eat ice cream.

The thing is, I've had a very easy two weeks. My Parkinson's and Dystonia symptoms were no big deal. I had more energy than usual and I was feeling good. I guess it was time for something to happen. After dinner, I was putting away some of the leftover food when I dropped the dish I was holding. Suddenly I was goosestepping backwards across the kitchen. Fortunately our kitchen is small and my backward progress was stopped by the cabinets on the other side of the room. Of course, the surprise of suddenly crashing into something very solid triggered my dystonia and I twisted like a pretzel, arms pinned to my chest, legs crossed, and feet turned in and under. I also started into some involuntary muscle movements called dyskinesias, which most PD folks get with too much medication. I get it when my meds wear off.

I thought it would be a good idea to sit down. Walking on the sides of my feet, I managed to propel myself into one wall and ricochet into the doorway. Eventually I made it to the other room and sat down. My husband felt badly he couldn't really help me so he brought me some ice cream. By now, my neck had decided to join the game of twister and my right ear was attempting to touch my elbow. 

No, I told my husband, I don't want to be fed. I could do it myself. My right hand was working from the wrist to the fingers. It was just the challenge of getting everything coordinated. It was chocolate truffle ice cream. Where there's a will, there's a way. I accomplished it with minimal mess. Okay, compared to a one-year-old eating cake, my eating habits were impeccable.

The Dystonic storm lasted about two hours this time. Now, I'm fine. A little sore, but fine. And definitely not bored.

The Cool Factor of Parkinson's Disease

One of those less than reputable news sites, which from here on out I will refer to as "The Weekly Wipe", recently published an article about Michael J Fox. They said he was "losing his battle" with Parkinson's and described him as a "shell of his former self". Geez. This article is filled with all sorts of misinformation about Parkinson's disease, not to mention misinformation about Michael.

Just because someone isn't on top of their game one day doesn't mean they're almost ready for a wheelchair. Parkinson's disease doesn't automatically lead to dementia. And, for crying out loud, PARKINSON'S ISN'T A BATTLE TO BE WON OR LOST, IT'S PART OF WHO WE ARE AND OUR CHALLENGE IS TO LEARN HOW TO LIVE WELL!  We're not fighting to find a cure, we're searching for a cure and celebrating each step we make. If we look at it as a battle, we've all lost. I refuse to live my life fighting. I'd much rather be dancing.

The battles out there have to do with all the misconceptions and misinformation that is spread around when someone like Michael J Fox says he doesn't want to talk to you folks at The Weekly Wipe. When it comes to those battles, it doesn't matter whether our meds are on or off, or whether or not it's a good day.  We'll still kick your ass. 

And Michael, you've allowed us to get to know you with all the ups and downs of your journey. You've added a huge cool factor for PD. I mean, really, PD can be a challenge, but hey, I have something in common with Michael J Fox. How cool is that? Regardless of what challenges may hit on any given day - or moment - you're still cool. 

Okay, the cool factor went up a few more notches when I found out Billy Connolly also has PD. Wow. I've got something in common with Michael J Fox AND Billy Connolly.

Twisted Body Logic

It's almost academy award night again and the celebs are preparing for the race. In their pit crew are skin specialists, make-up artists, hair dressers, personal trainers, wardrobe consultants, and sometimes even cosmetic surgeons. They're photo-shopped even before they're photographed. I'd consider boycotting the awards, but I don't watch them anyway.

At my 40th high school reunion, one former classmate was very nervous. She pointed out to me her newly dyed hair, which had gotten the whole spa treatment earlier that day. She wanted to come looking good. More than good. She didn't say it, but I knew she had been voted the "Most Attractive" in our senior year. 

When I was in business school in 1976, the psychology teacher taught us some rather disturbing lessons. She said it was the responsibility of the wife to maintain her body in such a way that she will be attractive to her husband, but it would be foolish for women to expect said husband to be faithful.

Where's a good feminist when I need one?   ...Oh, that's right. She's in the other room doing homework.

My daughter is a millennial feminist. I'm a 70's feminist. We've come a long way with women's rights, but we still have a long ways to go. The difference between the 70's feminists and my daughter's generation is when we were sexually harassed by a boss at work, we fought to be taken seriously and not lose our jobs. The millennial feminist would get the boss fired. We talked about how warped society's portrayal of women and beauty was, but we often bought into it anyway. Millennial feminists are slowly changing our whole idea of what is beautiful.

Obviously, they couldn't be doing this without the work we, and the women before us, put in. It's paying off. There are now models who are bigger than a size 0. There are even models with disabilities that aren't hidden or even minimized, but celebrated. Young men and women are making things like designer prostheses for people who are missing a limb, and lingerie ostomy bags. They are telling us over and over: There are so many ways to be beautiful! They're not just talking about being a beautiful ...person, either. They're talking beautiful...period.

This is good news for those of us who grew up with all the other messages. It's even better news for those of us who are dealing with odd neurological stuff that makes us twist, shake, trip, spill, and walk into walls. We generally know we are beautiful people. We just get tired of feeling klutzy and unattractive. And tired of hearing those things that are meant to make us feel better. You know, we're beautiful if we see ourselves as beautiful - to be beautiful is to be yourself - beauty isn't about having a pretty face. This is when I love my feminist daughter who would counter with your face is beautiful, just the way it is. She also reminds me to dance when I'm having trouble walking.

I told her she must be raising me right, because one day I realized I was starting to believe her words more than the messages our society has been giving us about beauty for many years. 

Parkie Spotting

“There's one!”

“How can you tell?”

“See... no arm swing...and he's shuffling.”

“Okay, how about that one over there?”

“Hmm... not sure. We'll have to move in closer.”

We're Parkie spotting at a local shopping mall. It's a new sport and today it's a close race to see which team can correctly identify the highest number of people with Parkinson's disease. So far, Team #1, the Shakers and Bakers, a group of chefs who all have PD and are known for their creative overuse of spices, have three people on their list:

1. a customer who stopped in the doorway of the store and couldn't seem to pick up his feet

2. an older man shuffling his feet and not swinging his arms as he walked by

3. a clerk who didn't blink for a full 4 minutes, even when she was startled

Didn't blink? That was a good call and should score well for the Shakers and Bakers. That's right folks, people with PD often don't blink much. It means the “non blinking Senator” in the youtube videos might NOT actually be an alien.

While we're waiting to check in with Team #2, the Dopamine Dozen, we'll take a few minutes to discuss the origin of the sport. In 1987, a group of friends met at a local fern bar for lunch. One of their group arrived late, looked slightly disheveled, and was slurring his words. The hostess refused to seat him, saying he was obviously drunk. Of course, he wasn't drunk. He had PD. The incident was resolved with a minimum of yelling, swearing, and threatening, and the group spent the next hour discussing how many supposedly drunk people actually had Parkinson's.

After this, they were always on the lookout for people who shuffled their feet, spoke quietly, didn't blink, didn't happen to notice that their dog had been sprayed by a skunk, or appeared to be drunk. Each time they saw someone, they were smile and nod and say, “Probably Parkinson's”.

In 1990, their activities came to the attention of Really Weird Sports production company, producer of Who can Snore the Loudest and Diaper Change Champions, among others, and they promptly stole the idea and developed it into a competition. Today's teams observe a controlled group of everyday people mixed in with an unnamed number of PWPs (People With Parkinson's) who are released into the shopping mall at the beginning of round one. The teams receive points for correctly spotting the Parkies.

The second round will be celebrity Parkie spotting. This one is more difficult as not all the celebrity PWPs have come out of the closet. Points are awarded according to how well each team presents their observations and argues their case. Due to confidentiality laws, the results are considered pure speculation and are not to be taken for fact.

The most recent possible celebrity Parkie sighting is Former President Bill Clinton. With a noticeable tremor in his left hand, and a gravely voice, many are quietly smiling and nodding their heads, indicating they are privately convinced he is one of them. The former president is denying this diagnosis, saying, while he does have a tremor, it is definitely not Parkinson's disease. This led one competitor to remark, “It's not that we don't believe Mr. Clinton, we're just wondering whether this is an I-didn't-inhale-that-joint type of definitely-not-Parkinson's-disease.”

Back to today's competition: Round one is over and it looks like the Dopamine Dozen has a longer list then the Shakers and Bakers. The judges are going through each spotting and awarding points. The Dopamine Dozen look confident, but what's this? Two of their spottings have been crossed off the list. Seems those people really were drunk. The Bakers and Shakers fans are going crazy.

It's going to be close.

The Tattoo I'll get Someday

When I went to pick up my mom for a doctor's appointment the other day, there was a fire truck and ambulance in front of the building. It's not so unusual at a facility for the elderly, but it's always a jolt. Who had become ill or fallen? One of my parents? Probably not, since no one had tried to call me, but who? I've started getting to know some of the residents enough to worry about them.

It was impossible not to see what was going on. A resident (someone I didn't know) had collapsed in the lobby right in front of the nurse's desk. She was on the floor and bare from the waist up. She had received CPR and was now on oxygen. The paramedics were getting ready to transfer her to the stretcher and ambulance. 

When I am old, if I live long enough to be old, I want a tattoo on my chest that says DO NOT RESUSCITATE in big bold letters. I felt so sorry for this woman who did not have a DNR order, or maybe she did and it hadn't gotten in the files or they couldn't find it. If the paramedics don't have the DNR order, they are obligated to try and resuscitate. As they left, I could hear the woman moaning and crying in pain. CPR can be very hard on old brittle bones.

I could feel for her. Just when she was finally. nicely and peacefully dead, someone had to come and ruin everything. When one is in their mid 80's to mid 90's, death isn't so scary. It's more like a nice long nap after a very busy day. She didn't sound too happy to be woken up.

Signing a Do Not Resuscitate order is an individual and/or family decision and I understand these wishes need to be respected. I just want to make sure, when I'm old, that my wishes are known. 

Don't get me wrong. I'm not in a hurry now and I won't be getting the tattoo for a long time. If I choke on something, call the paramedics! If I have a stroke or heart attack, call the paramedics!

When I'm 80, let me go.