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.

Screen Shot 2017-08-04 at 10.18.11 AM.png

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.

Screen Shot 2017-08-04 at 10.28.20 AM.png

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

 

Computer Games as Therapy for PD????

I recently read an article from Parkinson’s News Today that explores the use of Computer Games as a non-drug therapy for Parkinson’s Disease.  Being an addictive person who spends way too much time on the computer anyway, I had to check this out.  Can I really justify the minutes – ok hours – spent playing games on my iPad as therapy for my brain? This sounds too good to be true.

The scientific study titled, “Early stage feasibility assessment of a non-pharmacological intervention for motor slowing and fatigue in Parkinson’s disease,” will be conducted by researchers from Bangor University’s School of Psychology(BUSP), the Betsi Cadwaladr University Health Board (BCUHB), and Walton Centre in Liverpool.

They say that the project will record Parkinson’s disease patients’ movement ability before and after playing touch screen “spatial reasoning games” to assess motor function and potential improvements.

download
Sudoku

That sounds great, but shouldn’t there also be a study looking at complex reasoning tasks and cognitive ability in games such as Sudoku and Word Brain, where the puzzles get more and more challenging as you progress?  I have been playing these games for a while, and can judge how well I am doing cognitively by how well I do on the games on any given day.  Being able to solve the most difficult Sudoku games is an accomplishment and a measure of cognitive ability.  Some days, I have no problems solving the games.  On those days, I feel that my brain is working the way it should.  Other days, it is just plain difficult and I have to work harder to achieve my goals.

Screen Shot 2017-07-11 at 7.56.40 AM

Word Brain is a word search puzzle, which starts out very easy with a    2 X 2 puzzle and progresses through 20 levels 0f 20 games each, most of which are 6 X 6.  The difficulty increases with each level.  Like Sudoku and other games, it requires  higher and higher levels of problem solving as you progress.

 

Do you have a favorite computer game that stimulates your brain?  Please share it here:

Practice Makes Perfect

 

It doesn’t get easier, you just get better

seen on a t-shirt at Box n Burn gym

You want to try something new, but it just seems too difficult.  You go to your first yoga class and you are lost.  Everyone else seems to know what they are doing, but you are clueless.  You keep going, hoping that you will figure it out.   And then, one day, you are moving through the poses like everyone else.  Your body seems to know what to do.  You wake up one morning to discover that you can get out of bed much easier.  In addition, your gait has improved, your balance is better, and some of your other symptoms have improved.  How did that happen?

Malcolm Gladwell, in his book Outliers: The Story of Success quotes neurologist Daniel Levitin, who said “that 10,000 hours of practice is required to master a level of mastery with being a world-class expert – in anything”.  He goes on to say: “It seems that it takes the brain this long to assimilate all that it needs to know to achieve true mastery.”  On average, it takes 10 years to reach 10,000 hours.  Some examples he gives are The Beatles, concert musicians and hockey players.  Their commitment to practice many more hours than others gives them the skills they need to be the best of their profession.

So how does that apply to Parkinson’s Disease?  We certainly don’t have the luxury of doing something for 10,000 hours.  But if we keep working at a task,  we should improve.  Right?  That is the theory behind LSVT, Rock Steady Boxing, Dancing for PD, Yoga and all of the other PD exercise programs out there.  We are told to learn new things.  It is good for the brain.  It can be difficult to learn a new skill, especially if you have a tremor and stiffness.  You start out slowly.  But it should start getting easier as your muscles and your brain adapt.  And gradually you will work harder and better, without even trying.   If you stick with it, you should start noticing positive changes. You have practiced your voice exercises diligently and at some point, you discover that no one is complaining that they can’t hear you.  You have worked hard enough and long enough to be able to project your voice without even trying.  It now comes naturally to you.

Unfortunately, many Parkie’s are in a slow downward spiral as their symptoms continue to worsen.  They try everything they can to slow down the progression, but don’t put in enough time to “master” a skill.  I wonder what would happen to Parkie’s if they danced or boxed often enough to reach 1000 hours a year.  Would they begin to master the moves?  And how would that translate into improvement of their PD?

These are questions for the researchers out there.  I don’t know the answers.  But I do know that when I am engaged in an activity that I have been practicing often, my PD symptoms seem to improve.  I may not have mastered the activity, but it is getting easier over time.   And that definitely makes my life better.

IMG_0262.JPG

 

If you are not sure what type of exercise to do, here is a list of 12 types of exercise suitable for Parkinson’s Disease patients

A note to my readers, we are leaving for a vacation in Ireland, so there will be no post next week.