Live Your Life!

LIVE YOUR LIFE!

This was the upbeat message brought to our group by one of our area’s pre-eminent Movement Disorder Specialists, Dr. Drew Falconer.  Dr.  Falconer, along with his partner, Dr. Sean Rogers, make up the INOVA Movement Disorders Center. ” Dr. Drew”, as he is sometimes called, was a favorite speaker from last year and the group eagerly anticipated his return.

Live Your Life was the message Dr. Drew brought to us this time.   his goal for his patients is to not let  Parkinson’s Disease or its symptoms stop them from living their life with joy.  That is quite the goal for a doctor to have , something beyond managing symptoms and testing evaluations. Implied in his goal is a personal investment in how his patients struggle or achieve under his care.

Life your life!  In support of his message, Dr.  Falconer makes these points:

• Parkinson’s Disease won’t kill you.
• PD shouldn’t  change your life.
• PD shouldn’t keep you from being happy.

Later, Dr.  Drew  through the floor open to questions from the group. I was often too busy listening to take complete notes.  If you took notes and caught other Q&A’s, please leave them as a comment. So,here we go:

What would you recommend that people with PD do take care of themselves?

A couple of recommendations were to get physical therapy as a regular part of your treatment.  With physical therapy , you can stay loose, get muscles strong and monitor changes.  He stressed exercise and spoke particularly about water exercises and boxing  He also strongly recommends the BIG & LOUD programs. In fact, he recommends the LOUD program annually. Also, you should see a Movement Disorder Specialist at least once a year if your regular neurologist is not one.  They are more trained in the new research and treatment of the disease.

Can you talk about pharmaceutical treatment options?

There are 16 medications in 5 categories, along with.  The first and still heavily relied upon is carbodopa/levadopa, in both generic and name brand, Sinamet.  Several reformulations have been tried, including the new and currently popular Rytary, which consists of  time-released carbodopa/levadopa.  Other medications the doctor finds useful includes Azilect, which enhances the natural dopamine in your body.

Dr. Falconer tries to find the best combination of medications to provide you with  a dependable even level of dopamine in your system to minimize the”on” and “off” phases many of us find with our medicines.  He also tries to minimize how many times a day you need to stop LIVING YOUR LIFE to pop a pill. He also sees an important role for DBS (Deep Brain Stimulation) in a long-term treatment plan.

What should I do for a healthy diet and how do I work around protein?

A diet similar to the Mediterranean diet provides  a general healthier diet for everyone.  Featuring nuts, olive oil, very little red meat, and lots of  vegetables and fruit, it can also help with constipation,

Constipation?  Why’d you bring that up?

Constipation is n of PD from which many suffer.  Research  has shown that constipation inhibits the processing of carbadopa/levadopa by allowing it to get stuck in your gut, thereby inhibiting its absorption in your system.

Is it likely that my Parkinson’s is due to genetics?

No.  Current research shows that the chance of it being genetic is very slim.

Why do I feel so bad around 3-5 pm?

That is a common time to be tired  for anyone.  Just consider all the cultures that have a  some form of a siesta. Dr. Drew’s partner, Dr. Rogers speaks  of this as a “neural reserve”, when you lose the natural ability to deal with  extra demands .

What new help is out there?

Three new possibilities are either on the market or on the way.

• Focused Ultrasound, a  surgery which focuses sound to burn spots on the brain that burns spots on the brain that cause PD.
• A new L-Dopa delivery system that stays in your gut for a long time to keep the medication in your system.
• The DAT scan, which will help with diagnosis.

 

Thanks again to  Dr. Drew Falconer for taking the time to drive to us and spend time with our group which was very educational of us.

And thanks, too, to all the members who contributed to our delicious lunch buffet.

Dr. Falconer completes our speaker series until fall.  Our meeting in June will be a group-only time before we take a summer break.  For fall, so far, I’m hoping to get a speech therapist in to talk about taking care of our voices.  If you have  a subject you’d like discussed or a speaker you’d like to hear, please email me with your ideas.  Some I’ve heard or thought about include:

• What if I can’t afford my medicines?
• If I decide to give up driving, how will I get around?  (one or two of our own could probably lead that one)
• Self-image and chronic disease.
• What is this “sleep” I keep hearing about and how do I get it?
• Raising children while coping with PD.

See you on June 1st and remember to …

LIVE YOUR LIFE!