Your Daughter's In Town: Living With Parkinson's Disease

About a month ago I read the obituary of David Servan-Schreiber who was diagnosed with a malignant brain tumor in 1992 at the age of 31.  At the time of his diagnosis Dr. Servan-Schriber was a neuroscientist and was expected to live a few years, at most.

After enduring traditional cancer treatments that didn’t work he developed his own regimen that included dietary changes, exercise, avoidance of pesticides and chemicals and better management of stress, including meditation that weakened his cancer.  He took a newspaper reporter to a local diner to show him that it is possible to stick to a healthier diet even when the menu’s heavy on fried foods and gravy.  He ordered staples of the Mediterranean Diet–Greek salads with olive oil and lemon, rye toast without butter and an omelet made only with egg whites, feta cheese, spinach and mushrooms.  Dr. Servan-Schreiber lived many years longer than anyone expected him to but only after deciding to treat his body differently.

There’s a lesson in his experience for all of us and especially people with Parkinson’s.Dr. Servan-Schreiber took things farther than I do—my mother (who is 87 and in her 17^th year of Parkinson’s) and I would have eaten the egg yolks in the omelet.  When they come from humanely raised chickens they have a flavor that you’ll remember from the days before chickens were raised in factories.  We believe that if you’re going to eat egg yolks in moderation (our only concern is their protein content), you should enjoy the full flavor.  The eggs are more expensive but, even with her significantly diminished sense of taste, my mother can always tell the difference.

Same with poultry and other meats:  the Mediterranean Diet includes meat in significantly smaller portions than American’s have become used to and most meals don’t include it at all.  So when we do eat meat it comes from a trusted source and is a little more expensive but tastes like it’s supposed to and we don’t have to worry about getting sick from the stuff that’s feedlot and factory-raised.  (There’s yet another recall of tainted beef reported in this morning’s paper.)

I was watching my mother walk yesterday with her cane.  She takes small steps with her feet close together.  She veers off to the right regularly as she loses her balance.  Her feet get tangled up with each other.

There’s gotta be a better way, I thought, and there is:  walk with your feet spread apart.  The recommendation is 10 inches.  Raise your toes as you step forward and hit the ground with your heel (except when you’re walking on ice–that needs to be done flat-footed).  Swing your arms if you are free to.  Take long strides.  My mother tried it and immediately felt sturdier.  She looked sturdier, too.  She’ll test-drive this new technique today when she goes out for lunch without me standing next to her for support.

This article will appear in the June, 2011 issue of The Torch, the newsletter of the Parkinson Foundation of Western PA.

The answer is “yes”.  We’ve long been told that people taking Sinemet (levodopa) should limit protein consumption until the evening meal when the ability to move is not as critical as it is during the day.  Proteins compete with and slow the body’s ability to absorb levodopa.  Of course, that may inhibit the ability to move around in bed or get up to go the bathroom.  But for some people, slow absorption is a good thing; it prevents dyskinesia and nausea.  For some, slow absorption is a bad thing because they don’t get Sinemet’s full effect—it has a relatively short lifespan.  As with everything Parkinson’s, the challenge is to experiment and find out what works best for you.

Here are some facts about plant protein and animal protein and how they affect levodopa absorption.

We know that a mostly plant-based diet is helpful for avoiding constipation and the problems associated with it and regular bowel movements also help Sinemet absorption. How?  A mostly empty gut below an empty stomach means that levodopa isn’t competing with anything anywhere to get to the small intestine and then to the brain.  And, even though plant foods have lots of protein they also have lots of complex carbohydrates.  Simple carbs are bad; complex carbs are good.  Complex carbs cause a useful rush of insulin into the bloodstream that removes the amino acids that we know compete with levodopa absorption for access to the blood-brain barrier.  Unobstructed access means a quicker trip to the brain.  Animal proteins don’t have carbohydrates so that useful rush of insulin doesn’t happen.

“Complete” proteins provide all the amino acids our bodies need.  Animal protein including eggs and dairy products is complete.   Protein from most plants is not complete on its own.  Soy (edamame, tofu) and quinoa (a plant seed that can be deliciously used in place of rice and other grains) are complete.  So add rice or corn to your bean burrito to create complete protein.

Plant foods don’t contain vitamin B12.  Animal foods do.  Levodopa already causes B12 deficiency and studies have shown that even a slightly lower than normal deficiency of vitamin B12 can lead to neurological and psychiatric symptoms that mimic and may exacerbate Parkinson’s symptoms including shaky movements and unsteady gait, muscle weakness, incontinence, low blood pressure, vision problems, dementia and mood disturbances.  So people with Parkinson’s should consider taking B12 no matter what they’re eating.  Talk to your doctor about B12 supplementation.

Deciding what to eat is personal but nutritionists lean toward eating mostly plants. Additionally, that inexpensive, easily available poultry and other meats are pumped full of growth hormones and antibiotics to prevent disease.  To maintain all-around better health eat more plant foods and when you’re craving some meat or poultry, spend a little more for the good stuff.  It’s juicier and tastier and needs a lot less help from seasonings and marinades.

Standard Medicare Part D is prescription drug coverage.  After you pay a $310 deductible, you pay 25% and Medicare pays 75% for your prescription drugs.  Once Medicare has paid $2,840 for your prescription drugs (unless you have supplemental insurance that covers prescription meds) you fall into the dreaded “donut hole”.  Patients are then required to pay the full cost of medications for the rest of the year unless, while in the “donut hole”, $3,610 is spent out of pocket.  That’s the catastrophic coverage threshold when Medicare will cover 95% of the costs until the end of the year and the patient pays the other 5%.

There’s a chance that you can avoid the “donut hole” or delay falling into it by taking stock of the medications you’re on and deciding, with the help of your doctor, whether or not you still need them.

Have you lost weight, begun exercising and started eating healthfully?  Maybe your cholesterol and blood pressure are under control and it’s time to stop taking those medications.  Weight loss and exercise help control arthritis, too.  Maybe it’s time to ditch those meds.  Has the crisis that caused your doctor to prescribe antidepressants passed?

Think about switching to generics.  Think about paying cash for your low-cost generics and save your Medicare Part D for more expensive brand-name medications.  And don’t forget to comparison shop.

Check out Medicare’s website at medicare.gov and look at doughnuthole.aarp.org where you can figure out when you’ll get into the hole based on what you’re taking now.

As a general rule, on the rare occasions that I buy bacon, ham and other meats I buy products that don’t contain nitrates and nitrites.   The other day, my mother and I ate a pepperoni pizza at a local restaurant.  Lots of pepperoni pizza and some leftovers the next day for lunch.  After two days of pepperoni pizza my mother was oddly confused and is now in day two of unusual weakness.

Researchers suspect that nitrates and nitrates found in fertilized produce and in food preservatives are linked to increased deaths from Alzheimer’s, diabetes mellitus and Parkinson’s.   Between the pepperoni and the cheese, I suspect there was lots of blood pressure-increasing, serotonin levels-affecting and who-knows-what-else-causing preservatives that are causing problems for her.  I was kind of headachey, too.

I’m no food scientist but when I see radical changes in my mother’s behavior and movement after she’s eaten something she normally doesn’t, it seems logical to attribute those changes to what she’s eaten.  I’ve become suspicious of the quality of ingredients most restaurants serve.  When you can buy a steak dinner for $10.00 it makes me question the quality of the beef.  Cheap food means food that’s being raised cheaply and unhealthfully.  Nitrates and nitrites used to preserve meats and cheeses extends their life and appearance but, ultimately, shortens ours.

Interesting experimentation is happening in Fort Wayne, Indiana in a cooperative venture with the city’s philharmonic orchestra’s innovation task force, the local Parkinson’s support group and Indiana University–Purdue University Fort Wayne (IPFW) Music as Medicine program.

The researchers have been told that listening to live music eases Parkinson’s symptoms like tremors, dyskinesia, and energy levels but there’s no documented evidence supporting this assertion.  So the Philharmonic is offering a series of free concerts for people with Parkinson’s and the general public.  The Parkinson’s people will rate symptoms before and after the concerts to determine if enjoying live music really does have an impact on symptoms.

Perhaps we should all do our own research.  I know that listening to recorded classical music calms this savage breast.  It will be interesting to hear their findings.

As often happens, I believe I’m thinking creatively only to discover that real researchers are exploring the very real benefits of light therapy for Parkinson’s patients and patients with dementia.

A quick internet search reveals that researchers at the University of Virginia and in Australia are recognizing the benefits of light therapy.  The Australians’ study, originally designed to discern the benefits of light therapy in dealing with depression related to Parkinson’s, discovered that exposure to bright light for an hour or so before going to bed reduced the need for medication by as much as 50%.  Light therapy has also been shown to promote better sleep and has been shown to calm people with dementia who experience the agitation and confusion of “sundowning”.

Shop around for an appropriate and affordable light.  I bought one that I found at Amazon that cost around $165.00.  Be certain to read the reviews before you buy one.  I did and I’m happy with the purchase.  Ours has a low setting and doubles as a nice, bright desk lamp.

Gray day after gray day makes the healthiest among us moody and out of sorts.  Imagine how it affects the person with Parkinson’s in your life.

My mother’s been sitting under the bright light every morning for the past month or so.  Since about the time she began the light therapy I’ve been doling out her supplements every day.  She took them irregularly on her own.  So in addition to the light therapy she’s taking CoQ10, fish oil, Vitamin B-12 (older people often have a deficit of B-12 and it’s important for neurological functioning), B Complex, D-3 and Calcium.

She seems significantly more “with it”, particularly after dark and more energetic and engaged during the day.  Is it the light therapy?  I don’t know.  But I do know that everything seems to be working in concert to make her more sociable and less befuddled.

After several years of no falls, my mother fell four weeks ago.  She fractured her right wrist when she held it out to break her fall.  The good news is she didn’t hurt or bruise anything else.  No black and blue marks, no aches or pains.  I’ll attribute that to her healthy diet, supplements and exercise.

The orthopedic surgeon gave us one direction as we left his office:  don’t get the cast wet.  No follow-up information, no helpful hints.  Here are my helpful hints:

• For a wrist fracture get a walker with a tray that can be outfitted to support the casted arm.  The walker should be at a height so that the user’s good arm is at a 45 degree angle.  The casted arm  should be strapped into the support so that no pressure is put on the hand; all the effort to move the walker comes from the arm.
• For bathing, put the plastic bag that the newspaper comes in (or any plastic bag) over the hand and cast then wrap the whole thing, extending up the arm beyond the cast with Glad Press ‘n Seal.  Cut it off with scissors after the shower.  Don’t bother with the cast protector sold in the medical supply store.
• The cast should be changed several times for proper support.  Make sure you get a new one as soon as the initial swelling goes down otherwise more damage may occur.  The cast will continue to loosen throughout the six weeks or so that it’s on and should probably be changed every week.
• Eating with the left hand when you’re right handed is tricky (and vice versa).  I use bowls when possible or an oblong casserole dish that’s 2″ deep.  My mother can push her food to the side without it spilling out all over the place.
• Consider eating with your plate in your lap for a time.  It was easier for my mother than sitting at the table or eating from a tray.  We put a bib apron on her so that she’s covered from chin to knees.
• Sit in a higher chair with a cushion on the seat; it’ll be easier to get out of.  We brought some sturdy lawn chairs into the house and put my mother’s favorite rocker in the garage for the time being.
• Exercise anyway.  The last thing we want is for people with Parkinson’s to lose capacity so figure out ways to keep moving.  It’s tough when you use a cane but sling the casted arm through someone’s arm and take walks, do leg lifts and bicep curls with the good arm.  Get an order from the neurologist for outpatient or in-home physical therapy.  Don’t ask the orthopedic guy–the point is to keep the Parkinson’s in check so the neurologist is who you should contact.
• Get a bottom bed sheet that’s satin or tightly woven and slippery.  It will be easier to get into bed and maneuver on your elbows.

Living with that cast is a challenge and an inconvenience for everyone.  These suggestions should make it a little easier.

I’ve noticed that my mother is stronger and sharper in the spring and summer and by the time December 21st rolls around she gets kind of confused and weak after dark.  Her neurologist says it may be depression but I don’t think so.  I have found that I feel claustrophobic when it’s dark.  When I can’t look out the window and see into the distance and I’m depending on artificial light to get around  I believe all kinds of functioning is affected including balance and thought processes.

A few weeks ago I bought a bright lamp for my mother to sit under for a half hour or so every morning.  I’m hoping for noticeable improvement but will report the outcome–good, bad or indifferent.