Thriving with Parkinson’s Disease

 

This is a summary of the talk given by Dr.Stephen Grill, from the Parkinson’s and Movement Disorder Centers of Maryland,  at the PFNCA Symposium on March 28th, 2015.  Any mistakes are my own.  Slides of Dr. Grill’s talks are now online at the PFNCA site.

It is entirely possible to thrive with Parkinson’s Disease.  It’s no surprise to discover that the first tenet of Thriving is…

Lead a Healthy Lifestyle

Exercise your MIND and your BODY.  Exercise , exercise , exercise.  It should be the number one  treatment strategy for people with Parkinson’s. There are lots of studies to back this up  One showed that working on a treadmill improves your gait and can be neuro-protective (meaning that exercise reduces the risk of getting PD.  Other studies show that people who exercise have a better quality of life.  Stretching increases muscle strength, exercise training increases the size of your hippocampus and improves your memory.  How do you know you’re doing enough?

You should be in better shape than your peers.

Dr. Grill describes how much exercise  is enough.  It’s important to keep in shape.  People with obesity issues are at a greater risk of impaired physical function. He suggested that a sustained and on-going activity, for 30 minutes 3-4 days a week is a minimal goal  And the exercise can be something you enjoy; it can be swimming, walking the treadmill or even sports like golf (if you walk the course), golf and even fencing.  [Note from me:  I find that having a variety of activities keeps me from getting bored.]

 

Be a Compliant but Savvy Patient

Start by choosing the right physician. Evaluate by:

  • Do they accept your insurance?
  • Are they affiliated with hospitals which you prefer?
  • Are they Board certified?  This means they’ve had classes in the field.
  • Scrutinize the staff.  Do they treat patients with respect?
  • Technology:  Are they using up-to-date equipment?  Are they using EMRs  (Electronic Medical Records)
  • A Red Flag: Are there more drug reps than patients in the waiting room?   [Me again:  Check out the wait time too.  See if it’s a well-run office.]

Women and minorities are less likely to seek a neurologist when they have symptoms.  But people who DO see out a neurologist live longer because neurologists tend to make the most accurate diagnoses.

Try to integrate your physicians.  Studies show quality of life is higher for those with more integrated care.  Its no so common in the US but the team approach is especially needed for complicated diseases.  The PCP (primary care physician), neurologist, urologist, etc.  , all need to communicate.  His tip was to have your doctors’ fax numbers because doctors are much more likely to fax than call or email.  And remind the doctor to send his notes to the other doctors. Have them  send all hospital notes to all physicians.  A reminder too, to bring a medicine list to all doctor visits.

Don’t take risks.

Avoid any avoidable activity which bears risk.

Breaking your hip is a game changer.

There are ways to avoid risk.

  • Get a good night’s sleep.  Use good lighting so you don’t trip if you get up.  Remove obstacles.  Add grab bars in the shower.
  • Avoid ladders.
  • Be compliant with regards to assistive devices if needed. People tend not to want to use a walker but its a way to keep control and lead a full and active life.
  • Take your medication

There are many major life decisions ahead:

  • When and if you retire
  • When to use a walker
  • When to stop driving (speed vs. accuracy)
  • When to move to senior living or assisted living

We have control over our disease.  Exercise and a healthy lifestyle.  Work with your doctors.  And don’t take inappropriate risks.

 

 

 

 

 

 

 

 

 

 

 

 

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