Starting Parkinson's medications... or not?

I read a lot, correction, I research a lot.  Genetically passed down from my father (thanks Dad!)  I love digging out information on practically anything for whatever project I am working on.   Research after my initial diagnosis told me to delay taking medication for as long as possible to prevent 'getting used to'  it.  The consensus of opinion was you would build up a tolerance and the meds would become less and less effective. Sounded logical so I was determined to delay as long as I could.  As it turns out, I was convinced later that this was antiquated thinking.

 In my second year after diagnosis, the dystonia in my hand was getting worse.  Most times you would find my arm held tight up against my body with some of my fingers straining to lay flat against my palm.  I needed to stretch it frequently to keep the muscles from getting sore.  If I massaged my hand first I could use it, albeit slowly.  I arrived at my normally scheduled neurologist appointment with questions at the ready as to what we could do about this.  My other symptoms were minor in comparison: slight drag of left foot, trouble finding the right word at times, a little restless leg, the ever present resting tremor and, of course, varied to no sleep.   After looking at my symptoms, Dr. Richard (my Neuro) asked what I thought about going on medication.  I told her about my concerns of starting too early for fear of building up a tolerance.  She patiently pointed out that the current belief was you didn't build up a tolerance, your symptoms were simply getting worse which required more medicine.  I took that to mean that by waiting, your symptoms will progress to the point you will need higher doses of medication to control them later anyways.  I figured you would end up starting at the same dosage of medication as if starting earlier and making adjustments along the way.  Why suffer for two years to end up right where you would have anyways?  With my hand basically useless I was at the point I needed to try something.  
So what were my options?  I had been on an SSRI (selective serotonin re-uptake inhibitor) in the past for other things and did not respond well.  Let's just say some of these drugs can cause significant impulse control issues and I was afraid the wine store cashiers were getting to know me by name.  That eliminated things like Dopamine Agonists and MAO-inhibitors basically leaving me to start out with Sinemet and Amantadine. 
Looking at my contorted hand and responding to her question about starting the medication I said, "I'm in."  Everyone has to make up their own mind, but in the two years since starting meds I know I made the right decision. Although my symptoms have progressed and my dosages needed adjustments, I feel much better "on" than "off."  This was never more evident than when my Neuro asked me to be evaluated off meds. I was shocked how much they were covering up. My symptoms have definitely progressed!
I did some more research (big surprise) on building up a tolerance to Carbidopa/Levodopa (Sinemet).  It's amazing how many sites still claim your body gets used to the drug and will need more to remain effective.  Anything written more recently though says the same thing my Neurologist said.  For example from another PD blog:


Both my doctor in Japan and Dr. Okun from here on the ask-the-doctor section of the forum seem to agree with the notions that 1) Sinemet will not stop working but your disease may progress to the point where Sinemet can no longer control the symptoms as well. This means you may experience increased off time, unpredictable off time, dyskinesia, among other things. There are ways to manage these issues, such as taking smaller doses more ofter or adding different drugs or discontinuing other drugs. 2) it is not beneficial to delay starting Sinemet if your symptoms are such that they prevent you from doing things you want/need to do or limit your mobility. Limited mobility is far more dangerous in the long term because of loss of muscle tone and cardiovascular fitness, which can lead to other very serious complications like heart disease or blood clots. Lost muscle is hard to recover and will limit mobility as well. 3) there is no reason to believe Sinemet is useful for only 3-5 years. You will find many who have taken it for 10 or even 20 years. Remember it's the disease that progresses, not the drug losing effectiveness. For this reason, it's important to have good medical advice on how to optimize your medication regime so your function is as good as it can possibly be for as long as it can possibly be. One thing is that if you are undermedicated, it's all too easy to slip into a downward spiral of inactivity leading to stiffness and weakness leading to further inactivity.... I know. I've been there before diagnosis. 4) young patients tend to have dramatic response to Sinemet and while you may end up needing to dose more often to control off time, you may be able to maintain the same dose over many years.
To me, it sounds like your doctor is following some quite old guidelines, as they used to say that Sinemet would lose effectiveness. But, that has been shown to be false. Perhaps talk more with your doctor, do a bit of reading over in the ask the doctor forum and elsewhere, and even seek out a doctor who specializes in movement disorders and/or PD.

I could not have said it better myself!

There are some new additions to the medication line-up: Rytary and Duopa.  Both are described in the Medscape link below. Plus, I am seriously considering the botulism toxin for work on the dystonia.  I'll write about that in an upcoming blog but there is an article below if you can't wait.

Medscape with the most complete list of available Parkinson's med, descriptions, etc here

Very interesting study on what can cause the dyskinesia and why taking L-Dopa may trigger it here

Michael J Fox foundation medication page here
PDF with good list and explanation of meds available here
APDA on botulism toxin here
Parkinson's Canada information on taking medications here

Khan academy on medications here - make sure you watch the other Kahn videos too. 

Interesting study on use of a dry powder inhaler to deliver meds into the body here

The basics of wearing-off here
Some drug side effects here
Article on impulse control here

Good guide to Sinemet here

Up next: "To sleep, perchance to dream, ay there's the rub"