Medicaton for Parkinson's: To Take or Not to Take, That is the Question?

 

It's 14 days out from my Parkinson's diagnosis- I am still trying to figure out what to do about the Sinemet pills prescribed by the neurologist. I got them. But I haven't used them.  It was too fast, too little information and just too serious to start taking them. And I really didn't want too much information- that would scare me. Not that I wasn't already scared.

I needed to find out more about Parkinson's first.  How about you?  Did you immediately start by taking levodopa? I didn't even have a toehold in the community or anyone to ask my questions to. So first I froze, fingers in ears and humming loudly.

I told 3 friends in texts. “Dear Corrine, I've got Parkinson's. I am going to bike and do ballroom dancing. How are you?”

My husband got me 2 books by Michael J. Fox from the library.  They sounded ok.  I wrote down positive quotes from “A Funny Thing Happened on the Way to the Future”:

•       “It’s catastrophe that offers the most promise for an even richer life.”

•       “The reality is that things change, how will I perceive that change?” 

•       “You've had help all along. And as the path widens or narrows, new and powerful influences will enter your life and aid your progress.” 

•       “Things turn out best for people who make the best of way things turn out.”

•       “Surrender, you are not in control.”  DAAA, I had just had a heart attack and 5 stents put in 2 months ago, I already knew I wasn't in control.

•       “Acceptance simply means acknowledging the reality of a situation, that it's truth is absolute.” The last one I was having trouble with- I go in and out of the denial stage. Or maybe I've hit the anger stage with the DAAA.......

The other book was “Always Looking Up” What I got most out of that book was The Michael J. Fox Foundation.  And when I googled that, up popped the Parkinson's Foundation.  Both had a beginner’s guide. Both guides were good and not scary. I could read them. 

And then one day, I girded my loins, and called the support line for the Parkinson's Foundation.  I talked, in my new, at times, whispery voice, to Linda.  She had worked for the foundation for 20 years and was indeed support. We talked about my scared images of my mother's Parkinson's journey, that I hold within me. She stressed that 2900 research projects are going on right now. Lots of good changes have happened in the last 20 years since my mom struggled with this. She talked about hope. She told me every one is different (I'm not my mom, I'm not my mom is my mantra)  and about another kind of medication that some neurologists give people to start with- Maobinhibitors. And about how exercise is now known to be wonderful for People with Parkinson's.  We talked about the Tango!

She was a blessing. She invited me to call back, to talk again.

If you would like to talk to someone: Call 1-800-4PD-INFO (473-4636) or email Helpline@Parkinson.org and get your PD questions answered in English and Spanish. We’re open weekdays from 9 a.m. to 8 p.m.

 

So do I now message my Dr. and ask about Maobinhibitors? Then I will need to admit I haven't started the medicine she told me to. I don't think Doctors like patients who don't follow their advice. Do I care? Uh, yes I do. What do I gain from taking Seinimet? Linda said it works fast compared to the Maobinhibitors. But will I get side effects, that will scare me? Yes, I did read the page of facts that came with the medicine. Do I gain from waiting to start taking Sinemet?  I have heard that it losses its strength and you need to keep taking more and more. And then you get more side effects.

Stay tuned,

Nancy who doesn't have tremors yet. Well not many.

Footnotes from Corrine: 

 My response to Nancy's text "Dear Corrine, I've got Parkinson's. I am going to bike and do ballroom dancing. How are you?”  was pretty much like this fave pic I took of Nancy back in 2017, tongue tied. 

Not for long though. I sent a gif of a couple doing the cha cha.