Striking a Balance

‘So, what fun things have you been up to lately’ is the finest question a health care professional can ask. It also happens to be the finest question I can ask myself.     Mariette Robijn

 

Two blog posts with opposing views on living with Parkinson’s  were published this last weekend, with much commentary from you, the readers, on various FB pages.  The PD Gardener wrote about the downside in  Why I think Parkinson’s is a Soul Sucking Disease.  On the other hand, Mariette Robijn asked  So, what fun things have you been up to lately?

I will let you figure out which one was better received in the Parkie community.  I would like to offer my own take on how we should be looking at both the positive and the negative views on life with Parkinson’s.  There needs to be a balance between both in order to live well with PD.  Concentrate only on the negatives, and you will never find any joy in life.  If you concentrate only on the positives, you may not be taking care of yourself properly.

On the negative side, yes, there are a lot of things that we don’t like.  We can all identify with many of the things that Stan, the PD Gardener, has listed.  For each of us, it is something different that has been taken away by this “soul sucking” disease.  There is a loss of self, of who you once were.  For some, it is a gradual decline, others see major changes overnight.  It may be the tremor that comes and goes, interfering with your ability to eat, write legibly or engage in some of your favorite activities.  For others, the pain can be excruciating one minute, and gone the next.  No reason for the sudden onset or disappearance.  You can’t walk, but you can dance to music.  Having Parkinson’s can be like having a split personality.  You never know how you are going to feel, from day to day, hour to hour.  And for your caregivers or carepartners, well, they are just as confused as you are by this rollercoaster that you are on together.  As a result, we forget how to have fun in our lives.

On the positive side,  you may find your opportunities for fun to be diminished, but they are still there.  You may just have to look a little harder.  But trust me, find some things that make you happy, and you will feel better.   So you can’t go ballroom dancing anymore.  Put on some music and start moving, even if you are in a wheelchair.  Laugh at yourself because of the ridiculous movements you are making.  You can almost feel your dopamine levels increase as a result.

Play games with your friends.  One friend of mine says that her mother, who has dementia, only wants to play Rummy Cube with her.  They are having more fun than they have had in years, just playing a game.  Best of all, she can see the fog of dementia lifting, albeit temporarily,  while they are playing the games.

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Play video games.  Yes, video games. When was the last time you played Super Mario Brothers?  Researchers at Purdue University are now looking at the benefits of use the Wii games to improve Parkinson’s patients’ movement, speech, and quality of life.  So dig out the old Nintendo Wii system gathering dust somewhere in your house and have a good time.

Watch a funny movie or tv show.  Something ridiculous, that will make you laugh uncontrollably is guaranteed to make you feel better.

imagesSmile.  Yes, smile, even a fake smile.  According to a newsreport on NBC just a few days ago,  Smiling can trick your brain into happiness – and boost your health. Why?  Science has shown that the mere act of smiling can lift your mood, lower stress, boost your immune system and possibly even prolong your life.  Another side benefit for us Parkies – a dopamine rush!

You don’t have to go to Disneyland to have fun.  You don’t even have to leave home.  The opportunities are there for the taking.  So when your doctor asks you if you have had some fun since your last visit,  you can say without hesitation, “YES” with a big smile on your face.

It’s #GIVING TUESDAY – no I don’t want your $$

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We have all been bombarded by this image over the last several days, by every non-profit out there, and for-profit organizations as well.  My inbox, junk and spam folders are full of them.  Yes, many of these organizations need money.  Yes, many of them are worthwhile.  And yes, many of them are not.

My husband and I give generously to many organizations that we have supported over the years.  But when I get a phone call or email from some obscure group I have never heard of, thanking me for my donation last year and would I give again, I have to laugh.   I do a lot of fundraising, but I have never seen that tactic proposed in any fundraising workshop that I have attended.

And then there are all of those “gifts” that come in the mail, asking for a donation.  Always accompanied by a heart wrenching photo of …..well, you get the picture.  And when you don’t respond, they spend more money on printing and postage to remind you that you haven’t paid for that “gift”.

So I started thinking about other ways that we can give on #GT_logo2013-final copy small_0

Here are just a few things we can do:

  1.  Collect all of those “gifts”  that came in the mail that you didn’t ask for, such as shopping bags, note pads and pens, calendars, etc. and regift them to a school, retirement home or other appropriate place.
  2. Take those nickels and dimes so carefully glued to a donation form asking for more and give them to someone who really needs them.
  3. If you have a fruit tree that is the gift that keeps on giving over a very short period of time, like my mandarin orange tree,  ask some local teens to come pick the excess fruit and donate it to a food pantry or homeless shelter.   Definitely better than letting the excess fruit rot on the tree.
  4. Clean out a closet and donate used clothes to a homeless shelter.  Take your children or grandchildren with you when you do.  It will leave a lasting impression when they see that someone else has been made happy by their no-longer needed things.
  5. Donate unwanted items to a thrift shop whose profits go to a cause that you support.  You know what I mean, those hostess gifts that you will never use, things you bought on vacation that seemed right at the time, but now look ridiculous at home, etc.
  6. Reach out to someone you haven’t spoken to in a while.  Don’t just text or email.  Call them.   The sound of a human voice is so much better than a ding on your phone.
  7. Give hugs.  Your spouse, children, grandchildren, friends, pets.  Hugs make everyone feel better.
  8. Give thanks those who make your life better.   Your spouse, family, friends, caregivers.  We don’t thank people enough.

I am sure you can think of other ways to give.  The important thing is to know that you are doing something positive for yourself and for others.

 

Soaring with Hope for PD

Screen Shot 2017-11-14 at 10.03.52 AMSeveral months ago, some Parkie friends of mine,  Amy, Clara and Naomi, started a project called “Soaring with Hope for PD”.  Inspired by the art installations that they saw at the World Parkinson’s Congress in Portland last year, they decided to create an art installation for the next WPC in Kyoto, June 2019.  Naomi is Japanese, and to celebrate her heritage, she settled on Origami Paper Cranes.  She says “traditionally, it was believed that if one folded 1000 origami cranes, one’s wish would come true.  It has also become a symbol of hope and healing during challenging times.  As a result, it has become popular to fold 1000 cranes (in Japanese, called ‘senbazuru’).”

 

They have taken this idea one step further.  Each crane represents a person with22852927_364077437370768_1492230337745861884_nParkinson’s or a person impacted by Parkinson’s. They are asking each person to give their message of hope, which will be written on a crane.  So instead of 1000 cranes, they have a goal of 10,000 cranes to bring to the WPC, each of them with a message of hope written on it.  Can you imagine an installation of 10,000 colorful origami cranes hanging from the ceiling?  How beautiful will that be?  And the impact that the installation will have will be substantial – there will be more cranes than there are people attending the WPC, representing the thousands who could not be there.

No automatic alt text available.To participate in the project, please
provide your NAME, LOCATION and WORDS OF HOPE by clicking HERE,   emailing to SoaringWithHope@gmail.com  or message it to them. They will dedicate a special crane with YOUR MESSAGE on it.  You can also help by getting the word out, sharing this post with others in your community.  They are also going to take pictures of the origami cranes and and post them on the Soaring With Hope for PD   Facebook page for all to see.
Soaring with Hope for PD – Parkinson’s
Raising awareness in PD Parkinson’s globally!

How to beat the “Meh’s”

I received an email a few days ago from a woman with Parkinson’s who is concerned about a decline in wanting to socialize.  She feels that her personality has changed and she is finding it difficult to explain how she feels to family and friends.  She points out that she is doing well, having had DBS in 2011 and exercising 3-5 times a week. But there is still that nagging feeling….

Probably all of us can identify with this woman.  At one time or another, to one extent or another, we have felt the need to withdraw from social situations, have lacked the energy to get out and get moving or have just found we are  . . . . apathetic, which is one of the hallmarks of PD.  If these experiences have been fleeting and short term, that is one thing (everybody has them to some extent).  But if they are persistent or long term, it is important that you reach out for professional help.

Some of this is understandably due to the symptoms we experience.  Some Parkies withdraw because they get easily overwhelmed by social situations. Others say that they just need some time alone — because they just do.  For others, speech problems, diskinesias or other physical manifestations of PD can make it difficult to socialize.

On the question of causation, Bev Ribaudo (Yuma Bev) just contributed a blog post on Apathy to the Michael J Fox website that is very informative.

She defines Apathy as:
1. Lack of passion, emotion, excitement
2. Lack of interest, a state of indifference
3. Lack of motivation

She goes on to explain how the changes in the brain of a person with PD can cause apathy.  It is a short article and I recommend that you check it out if apathy is one of your symptoms.

On the question of what to do to combat the the “Mehs”, there are some experiential lessons that have helped me and others I have talked to:  ZEDHX6k

  1.  Learn something new.  Learn a new language, take music lessons, find a new hobby that requires learning something different.   In the process, you may increase your dopamine levels and feel better.
  2. If large social gatherings are intimidating, spend more time interacting with people in small groups.  Having lunch or dinner out with just a couple of family members or friends may just be the boost you need.
  3. Create realistic goals for yourself, with rewards for achieving those goals.  Learn a new piano piece or read a book on a new subject,and get yourself a new pair of shoes, a hot fudge sundae or whatever else may motivate you.
  4. Join an exercise class with other people with Parkinson’s.  The camaraderie that ensues will give you a boost.  And you don’t need to explain how you are feeling because everyone else in the class understands.
  5. Volunteer.  They say that people who volunteer feel better and live longer.  Even if you have limited mobility, there is always something you can do.
  6. Get dressed in the morning and get moving, even if it is difficult.  You will feel better if you look better.  Lying around in your pj’s all day just encourages you to do nothing and reinforces the blah’s.
  7. Don’t write off your friends and family because you think they won’t understand.  Most of them do and are more than happy to help you whenever necessary.  As one doctor said to me when I mentioned my friends would not let me quit playing tennis no matter how frustrated I was with how I was playing,  “keep those friends!”
  8. Finally:  Look in the mirror and SMILE  You will be amazed at how much better it makes you feel.

None of these suggestions is a “cure” for apathy, but you might find some helpful for you.

We all have our down times, and we will have more in the future.  It’s ok and maybe even unavoidable to to give in to the “mehs” for a short time every once in a while.  Just don’t let it last too long.  We all have too much to do to let apathy get in the way.

When DBS goes wrong

I first met Vince Hendrickson several years ago in a Rock Steady Boxing class (now StoPD). It was always fun to be with Vince in class. He was always moving faster than everyone else, punching the bag with glee. He had a great sense of humor and inspired the rest of us to just have fun while we were there.

But sometime in the last few years, things started changing for Vince. We could see that he was struggling more and more in class. And freezing when trying to run. I sat down with him last week to talk to him about his experience with Parkinson’s.

Vince was finally diagnosed in 2000, after having symptoms for several years. Like most people with PD, it took a couple of years and testing for several other diseases, such as Lyme Disease and Fibromyalgia, before he was finally diagnosed with PD. His symptoms did not begin with a tremor, but instead with cramping and pain in his joints. His doctor started him on Sinemet (Carbidopa/Levodopa) about 1 ½ years after his diagnosis.

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Vince Hendrickson

Unfortunately Sinemet was not very effective for him.

About 5 years ago, Vince underwent DBS (Deep Brain Stimulation) surgery, which worked very well for him. But a second DBS surgery 3 years ago was not so successful. It turned out that the DBS unit was defective and had to be replaced. So Vince had yet another DBS surgery. Still no improvement. Another problem arose after the second DBS – Freezing.  Suddenly Vince would find his feet stuck to the floor. He has no problem walking up stairs, but when he gets to a flat surface, his feet just won’t move. So how does he deal with this? Vince took a “Big and Loud” course, which has helped with the freezing. He says the class helped him to retrain his mind to walk again. He has learned how to will himself to move. Of course, it becomes much more difficult to do that when he is tired. But I noticed at the end of boxing class that he was actually walking better. Vince agreed, but said that unfortunately the benefit of exercise wears off too quickly.

He has learned how to will himself to move.

Soon after his diagnosis, Vince had read that exercise was best thing for him to do to combat Parkinson’s. Before he found Boxing classes, Vince practiced Tai Chi and rode his bike. He was determined to live an active life-style. Things just didn’t work out the way he had hoped they would. He has had to give up some of the exercises he was doing since his second DBS surgery.

Vince worked for about a year after his diagnosis. He eventually had to apply for disability because it became too difficult to continue his job as a printing press operator. He is fortunate that he has his wife as his caregiver. She goes to all of his appointments with him, advocates for him and is very supportive. They still travel as much as they can. Vince told me that for the stress of airports, they purchased what he called a “Personal Carrier Chair.”  The chair, made by DeVilbiss,  is a Folding Transport Chair , which is essentially a folding chair with wheels that weighs only 19 pounds. If Vince is having trouble walking, all they have to do is open the chair and his wife can push him around. This chair has made it possible for him to travel and do many of the things that he wants to do.

Vince never ceases to amaze all of us in Boxing class.  He does whatever he can, and modifies if necessary.  Instead of running or walking, he will march in place, which he has no problem doing.  He can do just about anything in class that does not involve walking.  And he does it with determination and a smile on his face.  Thank you, Vince, for inspiring all of us.