Finally, some guidelines for a Parkinson’s Diet

Dr. Laurie Mischley, of Bastyr University,  has been tracking People with Parkinson’s (PwP’s) for several years for her “CAM Care in PD” study.  When I spoke to her at the World Parkinson’s Congress last fall, she explained that this is the only study looking at how people are living with PD now and following them to see who is having a more positive outcome and why.   Data is collected with twice annual surveys sent to the participants.  Multiple models were used to examine the association between diet, lifestyle factors, and PD severity, with Patient Reported Outcome (PRO-PD) scores used as the outcome variable. She just released an abstract published in “Oxidative Medicine and Cellular Longevity” on September 10.

I will not try to summarize the entire report.  You can read it here.  However, I will give you some of the key findings.

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The Good:

A plant- and fish-based diet, similar to a Mediterranean diet, is associated with the lowest PD severity score.  Fresh vegetables, fresh fruit, nuts and seeds, fish, olive oil, wine, coconut oil, fresh herbs, and the use of spices were all associated with statistically significant lower rates of disease progression.

The Bad:

Ice cream, cheese, and yogurt intakes were associated with higher rates of PD progression.

DIET SODA WAS ASSOCIATED WITH A FASTER RATE OF PD PROGRESSION

Consumption of canned fruits and vegetables was a strong predictor of PD progression. Stick with fresh fruits and vegetables whenever possible.

Soda, specifically diet soda, was also associated with a faster rate of PD progression.

A few other things to stay away from include meat and fried foods.

Nutritional supplements:   Only coenzyme Q10 and fish oil were associated with statistically significant reduced rates of PD progression.  The use of Melatonin for sleep produced inconclusive results.  Iron supplements increased PD progression.

And finally, organic foods were associated with a lower rate of progression.

What does this mean for us?  I have basically followed a Mediterranean diet for years, however, I am allergic to fish, so  I often each chicken instead.  I haven’t eaten red meat in years.  I never buy canned fruit and vegetables. My downfall is cheese.  I am not sure I can eliminate that completely from my diet, but I can certainly cut back on it.  I recently substituted almond milk for milk to use with coffee and cereal.  Years ago I switched to Tom’s toothpaste and deodorant to avoid the excess aluminum exposure.  The good news is that the progression of PD has been relatively slow for me.

This study will be continuing and more PwP’s are still being recruited.  If you are interested, contact Dr. Mischley at neuroresearch@bastyr.edu.

 

 

For more information on living with Parkinson’s, read   Natural Therapies for Parkinson’s Disease  by Dr. Laurie Mischley

 

Warning: Possible side effects may include…..Can we get rid of those annoying drug company ads, please?

 

Several weeks ago I participated in a study for a drug company ad.  I did not know ahead of time what I was being recruited to do, which is probably a good thing.

Before I continue, permit me a short rant:  I hate TV drug ads. Really HATE them.  Who wants to watch late stage baby boomers (us!) sitting on the beach holding hands or playing with their dog (always a Golden Retriever) while some guy whispers in a rapid fire undertone a list of possible side effects that includes possible head explosions and alien abductions?  And then I am supposed to do what with this wonderful information?  Go ask my doctor to prescribe it?  Like she wouldn’t know without my asking?  Has anybody ever actually done that (well, other than for Viagra)?  Would you want to be friends with, or even converse with, anyone who did?  And don’t get me started on the new disease acronyms they invent.  Hey Big Pharma, here’s an acronym for you.  STFU and lower the price of the drugs for us consumers.

So where was I?  Oh, yeah, the study.

It was a suprisingly good experience and I will be curious to see what the ad finally looks like.  The study was for a print ad for a Parkinson’s drug.  I participated from the comfort of my home, using my computer with a video hook-up to the interviewer.  The different concepts presented were interesting.  I thought that only one of the six ads presented actually addressed what the drug was for.  The others were trying to create an “image” for the drug.  One showed a very healthy person with (of course) a Golden Retriever, another looked like a Beer ad, and yet another belonged in a Women’s magazine 50 years ago.  They asked for my opinion and I was very candid about what I thought worked and didn’t work and why.  I hope that they are actually listening to us when they create the final ad.

If you are asked to participate in a focus group study for a drug company, please say yes and make sure that they know how you feel about these ads.  They really serve no purpose for us as patients.  We get the information we need  about new drugs and treatments from reliable sources on the internet and our doctors.  We don’t need the drug companies to tell us what we should be taking.  If their drugs really work to combat PD, we will know about them and ask for them without being subjected to these ads.

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Fake ad designed by Justine Cooper

 

 

Being Present – or How to Pay Attention when Your Cell-phone/iPad/computer Beckons

 

 

 

One of the biggest complaints I hear from my family is that I spend too much time on my phone or other electronic devices when I am supposed to doing something else.  It is hard to focus on just one thing.   My children notice that I am only half listening to them.  They tell me things and I forget them. They are especially concerned when I am babysitting my grandchildren.  They actually want me to give the grandchildren 100% of my attention whenever I am with them.   100%.  What a concept.  Is this even possible to do????   I try, but sometimes it makes my brain hurt.

I think I am paying attention, but apparently my PD brain has gone wandering.  I need that electronic fix.  If I understood correctly, my doctor said that checking your email actually gives you a Dopamine rush.  It may be minute, but it certainly can be addictive when your dopamine levels are low.  Because of that, reducing electronic device time might even be harder than trying to lose weight.

So here goes.  10 suggestions for losing the cell phone addiction and paying more attention to everything else.

  1. Set limits for yourself.  You may have to wean yourself off slowly to avoid withdrawal symptoms.  Side effects may include extreme crankiness.
  2. Play real games with your friends, children or grandchildren.   Do you still have board games or decks of cards from the dark ages?  Dust them off and let the games begin.  Put your cell phone away while you play.
  3. Stop texting.  It makes so much more sense to me to pick up the phone and talk to someone.  I miss the personal contact.  Besides, it is annoying when you are trying to do something and the phone keeps dinging with new texts.  Now that really disrupts my concentration.   Doesn’t the other person have anything better to do?
  4. Delete the games you love so much.  Why is it so much easier to focus on the games than on everything else?
  5. Check your phone at the door when you go somewhere.  Make it hard to keep checking for messages.
  6. Give your phone/iPad to your grandchild to watch videos when his parents are not looking.  At least you are not the one playing with it.   Besides, it can be quality time with your grandchildren.  Their parents don’t allow screen time? They grew up watching Scooby Doo and turned out ok.  Or did they?
  7. Find some other activity that your family hates to see you doing even more than playing with your phone.  I am not sure what that could be, but there must be something more evil out there.  Then your phone addiction won’t seem so bad.
  8. Explain to themthat certain PD drugs can cause addicitive behaviors, including excessive gambling, game playing or shopping.   There are plenty of studies to back you up on this.  What is more acceptible – gambling or too much phone time?
  9. Leave your phone at home.  Occasionally I forget my phone when I leave the house.  It can be liberating to be out without it.
  10. When your children complain that they were worried about you because they couldn’t reach you,  just smile and say “I had a cell-phone free day.  And it was wonderful.   And by the way, why do YOU spend so much time on your phone?”

Musings on Living a Life with Parkinson’s

“When you arise in the morning, think of what a precious privilege it is to be alive – to breathe, to think, to enjoy, to love.”   — Marcus Aurelius

Where has the time gone?  I was answering a questionaire today for a research study, and one of the questions was to rate my Parkinson’s.  Is it Mild, Moderate, Severe, etc.?  I had to stop and think about it.  Most of the time, my symptoms are very mild because of medication.  I am very fortunate and thankful that that is the case.  But here it is, 9+ years since my symptoms became noticeable and almost 8 years since my diagnosis.  Where do I put myself along the PD spectrum?  I opted for moderate because of the length of time that I have been living with PD.

It seems like forever.  It is hard to remember what life was like before PD.  I also don’t remember life BK (before kids).  Funny how our minds work.  The first few years, I was in denial.   But that gradually shifted into acceptance,  and my life changed.  It took a long time before I could tell anyone, and it is still not easy.  At first, I didn’t know much about Parkinsons. My kids used to call themselves “The experts who know everything” in videotaped skits.  Because of the compulsiveness that comes with having PD, therefore reading waaaaaaaay too much on the internet, I became “The expert who knows everything about PD”.  I imagine that became the case for many of you living with Parkinson’s.  The more I learned, the more I appreciated the researchers who are working to find a cure for us and how important it is for all of us to participate in studies such as the one I mentioned above.   More importantly, I learned what “magic cures” to stay away from.  Yes, there are still people out there trying to sell us snake oil.

I BECAME “THE EXPERT WHO KNOWS EVERYTHING ABOUT PD”

We say to others that we have PD, but we are not controlled by it.  Wrong!!!!!!!  Of course we are.  As much as we try to believe otherwise, somehow our daily lives are controlled by Parkinson’s.  Think about all of the pills you have to take, the daily exercise classes so you can keep moving, lack of sleep, forgetfulness.

But that doesn’t mean you can’t live well with Parkinson’s.  After all, with medication, many of us live relatively “normal” lives, raising our children, working, traveling and enjoying life.  And a bonus is getting to meet wonderful people in the PD community who have become close friends, because of our common bond.

So yes,  I have had Parkinson’s for more years than I care to think about.  It reminds me every day that it is there.  However,  I can still look forward to all of the joys that life has to offer – my husband and family, friends, travel, and most importantly, my 3 wonderful, amazing grandchildren.  Isn’t that what life is all about?

Exercise, Exercise, Exercise

Exercise is your medicine!  Do it EVERYDAY

[re+active] physical therapy and wellness

By now, you know that I am a big fan of exercise.  It has been a daily part of my life since I was young.  Since my diagnosis with Parkinson’s, it has become not just something I enjoy, but something that I must do to keep on moving.  I am sure that many of you feel that way as well.  But for those of you who have never embarked on an exercise program, you need to speak to your Movement Disorders Specialist about how to begin.  You may think that you cannot exercise because of limited movement or pain caused by PD.  That was the prevailing theory 50 years ago.  Today,  however, we know that lack of exercise only makes things worse.  You know the old adage:  use it or lose it.

Scientists, such as Dr. Jay Alberts from the Cleveland Clinic Lerner Research Institute, have shown the benefits of forced exercise on PD.  As a result, many physical therapists and trainers work with PD patients to improve motor function using forced exercise.

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We have been told that Neuroplasticity is crucial to either change or delay the progression of PD.  And exercise is one of those activities that allows the brain to change. Exercise enables more of the dopamine in the brain to be used.  It is important to exercise outside of your comfort zone.  It increases blood flow to the brain and allows the neuroplasticity to occur.  Goal directed exercise allows for these changes in the brain to occur.  It improves the circuitry and improves the connection of the basal ganglia to the cortex.

Physical therapist, Allie Southam, from [re+active] physical therapy & wellness explained all of this in a fascinating talk last Sunday.  Briefly:

  • #1 reason for exercise:  potential to slow the progression of PD through neuroplasticiy
  • Find exercise that you love – otherwise you won’t do it
  • Goal-directed motor skill training through acquisition of skills
  • Learning a skill is hard, practice drives skill aquisition
  • Getting feedback during exercise – allows us to challenge ourselves
    and make ourselves aware ofour movements.  What used to be automatic now requires us to think about what we are doing.  It is also motivational

You can read a summary of her talk here.

Exercise for PD Handout

Tom McLaughlin, a personal trainer whose wife, Linda, has PD, has been working on a training program to improve PD symptoms.   He says that the brain is a learning machine.  Because of dopamine depletion, we have cut off the connection between the brain and our muscles.  The brain doesn’t know the connection is gone, so you have to go back and have your cognitive brain focus on motor function and motor skills.  You have to overcome the “defect” in the brain through exercise.

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Tom’s exercise program tries to activate all of the muscles, and challenge them, in order to improve neuroplasticity in the brain.  There are 16 steps to his program with the goal to work on 8 muscular functions on the top half of the body and 8 on the bottom. Those steps include working with each muscle group to move out to the side, the middle, forward and back, and to the 4 corners.   Focusing on these 16 steps will help the brain reconnect with the body to return to more normal function.

Both Allie and Tom stressed the words Focus and Learning.  To improve your PD symptoms, you must focus on your movements to make them become automatic again, and you must learn new skills to increase the neuroplasticity in your brain.

 

Some related articles:

Study: Biking Restores Brain Connectivity in Parkinson’s

Brain Connectivity