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.

Don't Brush off the Drug Factor

It was inevitable. As soon as the news announced Robin Williams' diagnosis of Parkinson's disease, I felt a wave of panic surge through my entire body. Despite telling myself I was jumping to conclusions and we'd probably never know what factors were in play the day Robin took his life, the question would not leave. I went to my internet support group and, sure enough, someone had posted this very question on the forum. Seems a lot of people were wondering the same thing.

Was Robin Williams on a dopamine agonist drug? Did his PD medications have anything to do with his suicide?

This morning I learned that a good friend of Robin's, Rob Schneider, has publicly questioned the role of Parkinson's medications in his friend's suicide. Afterward came the predictable response from the medical community (Doctors Blast Rob Schneider's Parkinson's Drug Twitter Rant). 

We don't know and will probably never know what caused Robin Williams to take his life. We don't know which medications he took for his Parkinson's. Most importantly, we really don't know enough about the brain and how exactly it works with drugs, our environment, and our unique personalities to say anything for sure. 

Just don't brush it off.

HEY DOCS... did you hear this? DON'T BRUSH IT OFF! Medications don't have "side effects", only effects. These effects can vary a lot from one person to another. Effects can start out slowly and build up after time - even without a dosage increase. And you know what else? Those of us who often report adverse effects from drugs are often brushed off because you all decide we must be imagining things.

After telling my nurse NOT to give me any medication for pain after surgery, the nurse responded with impatience and even anger. I obviously didn't know what I was talking about. When I threw up after waking up from surgery, the nurse scoffed at me, saying "Now what do you think of recovering from surgery without pain meds?" Two days later, she came to me white faced and shaky, and said, "I've never seen anyone as sensitive to medications as you are." It was as close to an apology as I would get.

After experiencing some not-so-helpful effects of dopamine agonists, my neurologist at Kaiser (great doc, Dr. Lindsey Hudson) put it this way, "You're just one of those people with a brain that's easily inspired."

No, that's not a euphemism for total nut case, it means just what she says. My brain is easily inspired, whether by drugs, poetry, art, music... I'm an artist. The connection between artistic creativity and psychopathology (extremes in mood, thoughts, and behavior) have been studied for a long time and the link is clearly established. Our brains are wired differently. It's not always the easiest brain to live with (just ask our spouses), but it's worth it. At least I think so.

"Easily inspired" is also a warning. Be extra careful when doing anything which will affect this brain. It's going to react differently than what you might expect. It may go zipping across the house, ricocheting off walls and ceilings, it could hide out in its room and not want to come out, or it could jump off the high dive - with or without water in the pool. Medication can also be the spark which lights the inferno and makes anything less scary than being consumed by the fire, even suicide. 

DON'T BRUSH IT OFF!

Sure, neuroscientists are learning more and more all the time, but really, we're still like Model T mechanics trying to understand the Space Shuttle. 

So, docs.. please, before you get out your prescription pad to prescribe any medication which affects the brain, get to know your patients a little. Find a way to check in with them often enough, especially at first. Suggest they have a family member come with them to appointments. Make sure the family member reports any changes in the patient's personality or behavior - too happy, sad, or angry? can't let go of thoughts? baking 12 dozen chocolate chip cookies every week? Spend more than 10 or 15 minutes with each patient and really listen. 

Don't brush off the medication factor. Our lives may depend on it.

Ikea Overload

We needed a new light fixture for our kitchen and had tried most of the stores in our area without finding what we wanted or could afford. Then we looked at the Ikea store website. Good selection, affordable, this looked like our best bet. We had heard a lot about this store and there was certainly a lot of excitement when it opened in Centennial, south of Denver.

I suggested we pack a lunch, some blankets, a flashlight, and a tent. I told the kids they would most likely be on their own for dinner. We also brought my mobility scooter, which was good. Walking continues to be my most challenging activity. For those of you who shop at Ikea often, you know how much walking is required. It was our first time. We had no idea what we were getting ourselves into. Chris drove. I told him where to go.

Twenty-two miles down the highway and around numerous twisting roads, we finally pulled into the huge parking garage belonging to Ikea.

Twenty feet inside the door, my remaining dopamine producing cells (DPC's) went on strike. They do this sometimes, usually when I need them the most. This time I was ready. I took some Sinemet. Though this medication usually slips in unnoticed and gets the work done, today it was no go. The DPC's were patrolling and the Sinemet was caught picking the lock. Today the DPC's were in no mood to allow a SCAB across the picket lines. 

Unfortunately, as most of us with Parkinson's know, there are times when the meds don't work. It's anyone's guess why this happens. Stress? Fatigue? Stores the size of small towns? DPC's are fickle, especially when there aren't enough of them. They decide when to work and when to tell me to take a hike – or not.

I was in trouble. I knew if I stayed on course, I was on my own. The tightness in my chest was not going to go away, my eyes would steadfastly refuse to blink, and I was at risk for falling asleep in the middle of the store. However, I did not come 22 miles to be thwarted by my own substantia nigra. After all, I had my husband AND my scooter with me.

All things considered, we did well. Having come for just one item, we made it out with less than ten. We found a nice light fixture for our kitchen, another light for over the sink, toilet brushes, a ceramic pot for Chris' Norfolk pine tree, and at least one more thing I can't remember. It took about three days to get from one end of the store to the other. Had I not brought the scooter, we'd still be there.

I think I need to go back. We forgot the light bulbs... and there was this cute little kitchen greenhouse, and candles, vases, pictures...

Better pack a lunch.