Take Charge of Your Life

Our challenges don’t define us.  Our actions do.                                                                                     Michael J Fox

For those of you who know me, you may remember that I was diagnosed with PD two weeks after finding out that I had breast cancer.   Obviously January 2009 was not one of my finer moments.   For the next six months I went through life in a fog.  Between the side effects of radiation and increasing doses of Requip for Parkinson’s, I was a wreck.

My wonderful internist, after I broke down in his office, sent me to a therapist who specialized in cancer patients.   Dr. I was just what I needed at the time.   She was kind, thoughtful and compassionate.  Without her, I could not have made it through that first year post diagnoses.  And because of her, I realized that the first neurologist, who said only that I had a Parkinsons like tremor, was not helping the situation.   After another breakdown in his office, my wonderful doc took me off of all meds and then referred me to the Movement Disorders Clinic at UCLA.  Dr. S was a life saver.  Not only did she give me a real diagnosis, but she gave me hope.  Her most important advice was to go on the Internet and start reading about PD.  She also referred me to the website Patients Like Me, which is a website for people with different chronic illnesses.  That was where I discovered others living well with PD and realized that yes, the future for me wasn’t necessarily all doom and gloom

What I learned from all of this is that you have two choices when dealing with PD.   you can suffer iPeanutsLucyDoctorn silence and let life just happen around you or you can TAKE CHARGE OF YOUR LIFE, and find a way to live well with PD.

Taking charge of your life means that you MUST advocate for yourself, or if you cannot do it, find someone who can.  Prepare questions for your doctor before your visit and bring them with you. Don’t be afraid to ask anything you want, even if it feels embarrassing for you.  Your doctor has probably heard it all before and can answer you honestly.  If you are not getting answers or think that your doctor is being dismissive about your questions, then it is time to find another doctor.

Educate yourself about Parkinson’s Disease.  There is a wealth of information on the internet and some terrific websites devoted to PD and or living with chronic illnesses.    The Michael J Fox Foundation and Davis Phinney Foundation are wonderful resources for the latest research and living with PD.

And the number of blogs written by people with Parkinson’s seems to be increasing daily.  Everyone’s experience is different, so check out several blogs to find the ones that you like.

Taking charge of your life also means makinUnknowng sure that your family and friends understand what you can and cannot do.  It is ok to say NO.  Don’t be afraid to say you cannot do something or that you need help.  This is not the time to be a martyr.

Do what you need to do to take care of yourself.  Exercise, find time for relaxation and get enough sleep.  That is the hardest thing for me.  Sleep is elusive for most of us with PD.  Carve out some “me” time every day to relax, meditate or do something just for you.

Finally, follow me on my Facebook page since I will be posting the latest news about PD when I see it somewhere.  There may also be some surprises, too!

Music and the brain

Rock and roll music, if you like it, if you feel it, you can’t help but move to it. That’s what happens to me. I can’t help it.

Do you remember the scene in The Full Monty when the group was in line at the Welfare Agency and they started moving unconsciously to the music that was playing?  How many times have we all done that?  I often find that when I am in the gym, I start moving to the beat of the music that is playing.  The instructors know the power that the music has over us to keep us going.  It pushes us to move, even when we think we can’t do another thing.

Playing music has an even more powerful effect on the brain.  For those of us with Parkinson’s, music may be an essential exercise for our brains.  I have been taking piano lessons for the past 3 years to keep my fingers moving.  That has definitely helped.  My dexterity has improved, it calms my tremor and makes me feel good.  But one of the problems that I discovered is that it is easy to play each hand separately, but when combining them, I have a much more difficult time.   And I can’t memorize music at all anymore.  In a chat room on Patients Like Me, I found that I was not alone.  My unscientific take on this is that we are using both sides of our brain when playing with both hands and the lack of dopamine makes it difficult for the two sides to work together.  And outside distractions make it even more difficult.

So why do this happen?  Take a look at this Ted-Ed video

Even if you have never picked up an instrument before, now may be the right time to start making music.  Your brain will thank you for it.