Down The Slippery Medication Road

Photo by Associated Press, appearing in The Washington Post based on an interview for a story on dental problems in cats)

Dear Readers,

The medication road can be a slippery one.   I don't mean to scare anyone away from taking this drug, as it does the best job.   You may not have a problem with it - my husband didn't.   Carbodopa/Levodopoa,  25mg / 100mg  is the drug known to be the most effective, and the drug of choice by most physicians.   Then there is me.........

The doc started me on that same combo.  Day one went okay - felt a little strange in the head, but but no real problem.   On day two - I was like a zombie and was so drugged up I was afraid to be at home by myself and almost called Don home from work because I was afraid to even walk in my own house for fear of falling.   Instead, I stay in bed most of the day until Don came home from work.  I had an upset stomach and I was "flipping my cookies" so to speak in addition to feeling weak and dizzy.  Even taking the drug with food (preferred choice is without food) didn't help.   My starting dose was 1/2 pill 2 x daily instead of the full dose of 1 pill 3 x day.    The neurologist did mention on the day of our initial meeting that it sometimes takes months to play around with the medication before getting the right dosage.  I was beginning to think that "taking no medication" was a better option than living the way I was as the time.   My friends encouraged me to "hang in there" and give it a chance to build up in my system.  "Maybe it will get better."

I don't recall how long I gave the medication a try, maybe 5 days maximum.  That period of time was somewhat of a blur in my head!   It basically turned me into a non-functioning adult.   The last straw was the day I lost my balance, fell into my desk and knocked everything off the desk, including the laptop.  

Ha ha - picture a drunk trying to right himself after falling down and knocking things over.   It took some effort, but I managed to "right myself" and put items back on my desk.  My next step was to call the doctor's office.  I was told to STOP the drug immediately.

The neurologist managed to work me in to his schedule the very next day.  When I filled him in on the details.  He muttered something like "oh dam" to himself, although I couldn't really hear what he said.   Obviously I was walking a narrow (albeit crooked) path towards falling and breaking some bones.   Who needs that!

I asked the doc if I could possibly try to take extra doses of Mirapex, which is an older drug used to treat Parkinson's.  I had been taking that drug for a good 5 years for Restless Leg Syndrome (RLS) and had no side effects except for getting a little tired by the end of the day.  It seemed the lesser of two evils to me.

The doctor explained that Mirapex tends to create compulsive gambling in some patients and that is the reason doctor's hesitate to reocmmend it.  He was concerned that I'd become a compulsive gambler.   He asked if I liked to gamble, and I laughed!  Ask our friends that we used to cruise with - they'll tell you I don't last in a casino more than 3 minutes.  I'm the original party pooper when it comes to gambling.  Even the noise in a casino drives me crazy, and I can't wait to get out of there.  After promising the doctor I'd have Don keep an eye on me for gambling behavior, he authorized the drug.

Now any time a doctor suggests upping the strength of the drug in order to stay with one pill instead of several - be aware!  One plus one does not always equal 2 when it comes to drugs I have discovered.  (A pharmacist confirmed this theory for me).

My original dosage for RLS was 1,2, or 3 tablets of .025 mg starting around 4:00  p.m. for RLS, as needed.   The doc told me the Mirapex now came in a strength of .5, so he could save me money by ordering the large dosage instead of so many pills.  He ordered .5 mg twice a day - morning and night.  The .5 was to equal two of .025.

Sorry this post is getting so long, but I felt it important to document all the facts, not only for my own benefit, but also for any reader newly diagnosed with PD that might be reading this blog.

Until next time,

Mary

Tossed A Curved Ball

Dear Readers,

Sometimes life throws you a curved ball, and it's up to you to catch it and do the best you can with the ball tossed at you. You can let it fall to the ground, or you can catch it midair and figure out what the next step is. I'm slowly trying to figure out what to do with the curved ball tossed at me and my husband.   But, this is my blog, so things will be written from my perspective.   I will talk about Don sometimes, and might even invite him to be a guest blogger a time or two.

Both my husband (Don) and I have been diagnosed with Parkinson’s Disease.   Don was diagnosed in April 2010, and I was diagnosed in February 2011.   Don does not have a family history, while I do.  Neither diagnosis came as a total surprise as both of us have had apparent symptoms for at least 3 years.   In both cases, we’ve both had shaky hands, which makes doing fine-motor skills difficult – little things like threading a needle on a sewing machine or for fine needle work, and in Don’s case (he’s a hobby artist) painting  on a canvas in fine detail.  Don started shuffling in his walking gait, scaring our local friends and myself, - so afraid he would trip himself.   I developed very weakened muscles and have been afraid my legs would not support me and walk in a stopped position instead of standing up tall.

There is no cure for Parkinson's Disease, and no prediction of how rapidly the disease will progress. The best you can hope for is to manage the symptoms with a combination of drugs. But, more on those drugs next time.

When you are going through something this, it's very important to be surrounded by supportive family and good friends. Even Mario's Twitter pals have been very supportive of both of us (his ooman). Not a day goes by on Twitter without one of his pals inquiring about his M and D and how they are doing. I am so blessed to have this support and the support of local friends.

I do not have a direction for this blog other than to document my journey, share my thoughts, feelings and limited knowledge. I also hope to learn from you, and welcome helpful suggestions and feedback as living with this disease is much the same as living with a multitude of other debilitating diseases.

Until next time,

Mary