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.

You’ve fallen and you can’t get up. Now what?

“Help!  I’ve fallen and I can’t get up!”

Remember that commercial from several years ago?  It was everywhere.  It was for Life Call, an emergency alert system for elderly people.  That commercial was from 2007.  I couldn’t remember what the company was and had to look it up.  That memorable line is most likely lurking in every Parkie’s head.  What if I fall?  How can I get help?

That happened to a Parkie friend of mine last week.  Fortunately she was at home one evening with her husband, when she slipped and fell.  The next morning, she discovered that she could not walk.  Her husband called an ambulance to take her to the ER.  Barbara was taken to a very well known hospital in Los Angeles and things went downhill from there.

What went wrong?  For starters, she did not have a list of her medications.  The paramedics wanted to give her morphine, although they had no idea if it would interact with her meds.  She refused the morphine. When she asked for her meds, she was told that the pharmacy at the hospital did not have what she needed, and furthermore, wasn’t familiar with the two medications, Rytary and Mirapex.  She happened to have one Rytary in her purse and had to take it when no hospital personnel were around, because it was not in the prescription bottle.

I got an email from her the next morning, the subject line:  Oy vey, get me out of here!   I went to visit her, and she was shaking like a leaf, most likely a combination of stress and no PD meds.  Fortunately she went home later that afternoon, but the experience was a nightmare.

I asked Barbara if she had any emergency information on her phone.  She did not, and had never thought about it.  For those of you who are iPhone users, there is an app called Apple Health that allows you to enter all of your medications, doctors, emergency contacts, etc.  I am sure that there are many more apps out there for Android and iPhones, but this is the one that I use.

I have several recommendations for you, which are also good for travel.

  1.  Your phone is your best friend.  Put all of your health info on an app on your phone.  And make sure that someone (spouse, caregiver) can access the app if you can’t do it yourself.
  2. Make sure that you list Parkinson’s Disease, and any other health conditons you have, along with drug and food allergies somewhere on your phone.
  3.  Keep a detailed list of your medications, including non-prescription drugs and supplements
  4. If you do not have a smart phone, print or type a list of all of the above information and keep it with your ID or Driver’s Liscence.  Keep an extra copy at home.
  5.  Pack an emergency bag and keep it where it is easily accessible.  Include several days doses of your meds in the original prescription bottles.  You might want to keep your empty bottles and put enough pills to last several days in them.    Just make a note to refresh the meds every few months.
  6. If you live alone, make sure that you have some kind of emergency alert system.
  7. Thank you to Tom Eckhardt for reminding me about the Aware-in-Care kit from the Parkinson’s Foundation.  The kit takes care of everything I mentioned and more.

Do you have any other suggestions?  I will add them to the list which I will keep it posted on my website.

Can you increase Dopamine in your brain without medication?

The internet is a treasure trove for discovering new music to new videos. A simple dopamine booster is browsing Pinterest or even Amazon for new products and items.             – endless events

While surfing the internet I ran across an article titled 10 WAYS YOU CAN INCREASE DOPAMINE LEVELS IN THE BRAIN WITHOUT MEDICATION on the website dailynaturalcures.*   I eagerly read the article to find out what magic tricks would help release some more much-needed dopamine into my poor brain.  

maxresdefault.jpgBasically, the author says that we get a release of dopamine when we receive a reward of any kind.  The more we are rewarded, the more dopamine is released.  And what are those rewards?  One obvious example:  a trip to Vegas can give you a big dopamine rush, especially if you win.  My MDS (Movement Disorders Specialist) once told me that the reason we get addicted to games on our phones, tablets or computers is because of the instant feedback (think reward) that causes a small dopamine rush.   But rewards don’t have to be something measurable.  It can be the satisfaction of getting something done, creating something, etc.   

The article goes on to differentiate between addiction, where you need to seek more and more rewards to feel fulfilled, probably as a result of some past trauma in your life,  and working towards rewarding actions to create fulfillment and achievement.

Another article from Endless Events lists 10 WAYS TO INCREASE DOPAMINE TO BOOST YOUR PRODUCTIVITY.  The author suggests many of the same things from a different point of view.  The bottom line is that there are many things you can do to increase the dopamine release in your brain, but please, do not look at this as a substitute for medical care.

A little more internet surfing (and many more dopamine releases later) turned up numerous articles and some hilarious videos – one narrated by a robotic voice (watch here )- on how you can increase the dopamine in your brain.  Everyone has some “snake oil” cure for you.  Read at your own risk.

So here are some of things the two articles mentioned above suggest to increase dopamine:

  • Make a checklist for your small stuff each day.  Just getting through the list each day is a reward
  • Exercise
  • Do something creative – draw, paint, write, etc.  Many Parkie’s have found new creative outlets which really do make them feel better.
  • Listen to music
  • Meditate
  • Increase your Tyrosine – foods like Almonds, Avocados, Bananas, Chicken, Chocolate, Coffee, etc.
  • Take supplements – but be careful with these.  Some may interact with your medications, so check with your doctor first.

I would like to add a few more ideas:

  • Eat more chocolate- it contains small amounts of a compound called phenylethylamine, stimulating your brain cells to release dopamine.  (And it’s a reward!  Well, sort of.)
  • Laugh a lot (thank you Yuma Bev)
  • Hug your spouse, your children or grandchildren
  • Take your dog for a walk
  • Curl up on the sofa and read a good book
  • Finish the Sunday crossword puzzle, or solve that really hard Sudoku game
  • Learn something new:  a new language, music lessons, a new skill
  • Celebrate each birthday, anniversary or other special date with those you love.
  • Finally, just make time for yourself and do what ever you want.  Pamper yourself. With chocolate of course.
 *The original article was written by Stephan Gardner and was published in Collective Evolution   on January 20, 2016

Breast Cancer vs. Parkinson’s – a second look

Last October, I wrote about the differences in how Breast Cancer and Parkinson’s Disease are perceived in the general public.   Unfortunately, not much has changed in the last year.  Since October is Breast Cancer Awareness Month, I would like to revisit the topic.

This past April, during Parkinson’s Awareness Month, it was once again, very difficult to find anything outside of the Parkinson’s community that made people more aware of Parkinson’s Disease.  Even though April marked a major milestone for Parkie’s, the 200th anniversary of James Parkinson’s groundbreaking paper on the “Shaking Palsy”, PD still remains the disease that no one wants to talk about.  Yes, there is the occasional feature on tv news, usually of a boxing class for people with Parkinson’s, but not much else.

Breast Cancer, on the other hand, is still the “sexy” disease.  Numerous people participated in the Revlon 3-Day walk in September, complete with silly costumes.  My guess is that some of them joined for the fun, not because they or a loved one has Breast Cancer.  Everyone wants to find a cure for Breast Cancer, so these people support it because it is a good cause.  I can’t imagine anyone without a connection to Parkinson’s doing the same thing.  In addition,  I am waiting to find out what pink items the department stores will be featuring next month.  After all, these are things I must purchase to find a cure.  They can’t do it without me!  No one asked me to buy anything to find the cure for PD last April.  Someone needs to come up with a campaign to improve the image of those of us suffering from Parkinson’s.  We really do deserve it.

So here is my post from last year.  Do you have a similar story?  I would love to hear from you about your experience.

October, 2016

Almost eight years ago, I was diagnosed with Parkinson’s and Breast Cancer in the same week.  Obviously, it was a week when I wished I had just stayed in bed and hid under the covers.  How do you react to the news that you have not one, but two major health issues that will be with you the rest of your life?

Much of the next six months remains a blur to me.  I underwent a lumpectomy and radiation for the breast cancer.  A neurologist put me on ever increasing doses of Requip, and my estrogen patch was taken away from me.  All of this meant that I slept all day, was plagued by hot flashes all night and pretty much walked around in a fog all of the time.

Somehow I was able to come to terms with having breast cancer immediately.  My mother had it, my sister had it.  It is the disease that most women fear most.  And it is the disease that is talked about everywhere.  October is Breast Cancer month and there are a lot of stores that celebrate by producing Pink Products, or should I say Pink Profits?  It doesn’t matter how useless the Pink Products are, we buy them anyway because it makes us feel like we are doing something positive.   Celebrities talk with pride about recovering from breast cancer.  There are rallies and walks to raise money.  I even corralled my friends to walk with me as a team for the Revlon Breast Cancer Walk that first year.  We wore our Pink boas with pride as we finished our 5K walk and entered the field at the Los Angeles Coliseum where the Olympics were held.  We were Champions in Pink!  Breast Cancer is fashionable.

But Parkinson’s is another story.   It was hard to come to terms with

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Is this really typical?  Do we all look like this?

that diagnosis.  I wasn’t that old (57), I wasn’t a man, I didn’t shuffle, and I didn’t know anyone else with PD in my family or circle of friends.  It was something my friend’s parents had, but they were much older and didn’t move very well.  There were no Parkinson’s products for sale in the department stores during Parkinson’s Awareness Month.  I didn’t even know there was a Parkinson’s Awareness month until this year.  Parkinson’s events were not well publicized.  After all, who wants to go to an event where everyone is shaking, drooling and shuffling?  Parkinson’s is definitely not fashionable.

I was active, playing tennis, going to yoga, traveling and enjoying life as much as possible.  I didn’t have time for a chronic degenerative disease.  I just had a tremor, so I tried to hide it.  And I kept trying, but after a while, people started to notice.  I thought that if I didn’t say anything, it didn’t exist.  So I did what my friends and I call the “Parkie hand-hiding strategy”.  You know the one where you hold your shaking hand, sit on it, stick it into a pocket or purse, or do some other strange maneuvers just to prove that it isn’t shaking.

But of course, that didn’t work and I was only fooling myself.  So why couldn’t I admit it to myself?  Why couldn’t I tell others?  It took a lot of therapy and writing my personal narrative for me to confront what I called the “Elephant in the room”.  Once I started to write my narrative, which only my therapist was privileged to read, things started to talk-about-the-white-elephant-in-the-room.pngchange.  I started to write about life with PD.  But only for other Parkies.  The rest of the world still didn’t need to know.  And then one day, I made a mistake.  I posted something meant for my Twitchy Woman Facebook page on my public Facebook page.  And the world didn’t come to an end.  Wow!  I was outed.  And it was okay.

So now I have embraced my PD.  There is a wonderful world of people in the Parkinson’s community that I have met.  The time I spent last month in Portland at the World Parkinson Congress was an eye opener.  I was able to meet some people who I have corresponded with through this blog.  I talked to doctors, therapists and researchers who valued my opinion.  I  spent time with new friends and old friends, looking for answers and camaraderie.   We have a common bond and we understand each other.  And we don’t all shake, drool or shuffle.  In fact, we spent a lot of time working to dispel that image. We all have the Elephant in the room, reminding us that life is not the “normal” that it used to be.  But that elephant is getting smaller and smaller, and one of these days, hopefully very soon, it will be banished from our lives.