10 things that can help you cope with your new diagnosis of Parkinson’s Disease

Many bloggers write about what you can do to cope with a new diagnosis of Parkinson’s Disease. We all have a different take on the issue, so if you have just been diagnosed, look for other blogs with similar titles. As they say in the Parkie world, we are like snowflakes, no two of us are alike. Each one of us has different symptoms and responds differently to medications and therapy. By reading several different blogs, you will get a broader perspective about your new companion, PD, which will be at your side for many years to come. So here are some of my suggestions for living well with Parkinson’s.

You have just been diagnosed. You walk out of the doctors office in a state of shock and the reality of it doesn’t sink in until after you get home. So many unanswered questions and your next appointment is 6 months or more away. What can you do?

Well, there are actually a lot of things that you can do before you see your doctor that will help you understand your new constant companion and to feel better about it. Before you do anything else, try to make a follow up appointment sooner if possible. Make sure that you bring someone with you who can help ask questions and take notes for you. Prepare a list of questions to take with you. We all forget to ask key questions if we don’t write them down. Click here for a worksheet from Health Monitor that you can use (scroll down the page to get to it).

Twitchy Woman’s 10 recommendations for the newly diagnosed:

1. Exercise. I can’t stress this enough. Exercise has been shown to be the most effective way to combat the effects of PD. If you are already exercising, good for you. See if you can increase your level of activity – the more you push yourself, the better the results. If you have not been exercising, start slowly. Walk around the block. Add distance and speed as it becomes more comfortable for you. Add different types of exercise to your routine. Varying what you do on a daily basis is good for your brain and your body. Most importantly, find what you enjoy doing. If you don’t like it, you won’t do it. My exercise routine is a combination of Boxing for PD, regular yoga classes, tennis and a Peloton bike.

2. Continue to do what you did before your diagnosis. PD may eventually slow you down, but for now, don’t let it stop you.

3. A good diet. Check Dr. Laurie Mischley’s website for recommendations for a Parkie diet.

4. Get out of the house. Loneliness is the #1 cause for a rapid decline with PD.

5. Find a mentor with PD. Ask your doctor if he/she can recommend someone living well with Parkinson’s who you can talk to. We have all been in your shoes and understand what you are going through. A mentor can answer your questions and be there for you when you need a friend.

6. Go to a support group. This may not be your thing, but try it anyway. There are a lot of different types of support groups out there and you may find new friends with PD who will become your support system.

7. Find a class for Parkies – boxing, dance, yoga, etc. The best way, in my opinion, to find your way through the maze of PD. The people you meet in these classes will become an important part of your support system. They know what you are going through. It also keeps you from being isolated (see #3) and gives you something to look forward to.

8. Go online and look for a few blogs and websites that you can trust and relate to. Beware of those trying to sell you a “cure”. Some good websites to start with are Michael J Fox Foundation, Parkinson’s Foundation and Davis Phinney Foundation. For a list of blogs I like, click on the Resources tab.

9. Read a good book about PD. Click on the My Books and Things I Like page (above) for recommendations. Two books I will recommend you start with are Parkinson’s? You’re kidding me, right? One woman’s unshakeable belief in overcoming a shaky diagnosis! by Sheryl Jedlinski andBrain Storms: The Race to Unlock the Mysteries of Parkinson’s Disease by Jon Palfreman. And order Every Victory Counts” from the Davis Phinney Foundation. It is free and a good resource.

10. Go to an educational program about PD. The 3 foundations above all sponsor educational programs, as well as The American Parkinson’s Disease Association and local Parkinson’s groups.

I hope that this will help. The most important thing for you to know is that you are not alone on your journey with PD. Don’t hesitate to reach out to me or to others with Parkinson’s Disease. We are there to help you.

Reaching a Milestone and an Inspiring New Book to Read

Look at you.  You’re in Spain.  You’re walking out here on the Meseta.  How many people are doing this?  How many people with a chronic disease do you see out here today?……Do something good, Carol.  Find something good to do with it.”    From The Ribbon of Road Ahead

 

Twitchy Woman has reached a milestone.  This is post #201 ! ! !   When I started this blog, I never expected it to  continue for as long as it has.  And what a ride it has been. Somehow, I have posted almost weekly in the last 4 years, and am honored to have made Best Parkinson’s Blogs lists at least 6 times (see the sidebar).  Other opportunities for me have come up as a result.   I want to thank everyone of you who has been following me, whether it has been for 200 posts or just 1.  My initial blogpost was seen by just 15 people.  There are now over 1500 followers.  Your support and encouragement have kept me going.

On my way to Kyoto!

Speaking of opportunities, as you may know, I submitted an abstract to the World Parkinson’s Congress.  At medical meetings, researchers are asked to submit abstracts (a brief description of their research study).  If their abstract is accepted, they will then create a posWPC2019_LOGO_246x153.gifter based on their research for display.  For the WPC, People with Parkinson’s (PwP’s) were also encouraged to submit their ideas (abstracts) for living well with PD.  There will be hundreds of posters on display throughout the conference.  If you are attending the WPC, look for me on Wednesday, June 5,  between 11:30-1:30.  I will be at my poster in space 649 to talk about it and I would love to meet you.

Thank you to all who responded to my survey for this project.   I cannot give you the final results until after the WPC, but the most important things for someone to live well with PD are Exercise and Getting Enough Sleep.  Neither of these should be a surprise for anyone with PD.  If we don’t have a good night’s sleep, the daytime fatigue can be debilitating.  And that fatigue manifests itself in many ways.

As far as Exercise is concerned, the more you do, and the more intense it is, the better.  I had hand surgery last Thursday and have not been able to exercise since.  I am already noticing, 5 days later, that my tremor is acting up more.  We need to think of Exercise as medicine, and I have not been taking my medicine.

The Ribbon of Road Ahead

And speaking of exercise, I just finished reading an inspiring new book by fellow PwP, Carol Clupny titled The Ribbon of Road Ahead.  After her diagnosis of Parkinson’s, Carol was determined to walk The Camino de Santiago. If you have traveled in northwestern Spain, from Pamplona to Santiago de Compestola, you may have seen hikers walking along the route marked with seashells pointing the way.  Pilgrims from all over the world come to walk on this grueling 500+ mile network of pilgrim routes, from Southern France to Spain, for many different reasons, often hiking through rocky mountain passes.  The Way, as it is called in the movie with Emilio Estevez and Martin Sheen, is difficult for anyone without disabilities, but Carol was not going to let that stop her.  With her husband, son and other family members and friends at her side, she recounts the obstacles she faced as well as the accomplishments.

Carol went back 2 more times to walk parts of the trail with other women whom she had met along the way.  She has also biked across Iowa 3 times with her husband on the annual 450 mile RAGBRAI (The Register’s Annual Great Bicycle Ride Across Iowa) with the Pedaling for Parkinson’s team.  Much of the ride was done on a tandem bike named Grepedo.  She did all of this before her DBS surgery a couple of years ago. The final chapters recount her surgery and the small successes that were the beginning of regaining her life before PD.  Her story is inspiring, and shows that determination and grit can help those of us with a chronic illness get through some of the more difficult times.  Carol has indeed done something good by sharing her story with us.  Look for Carol at the WPC in Kyoto if you are there.

 

Clinical Trials for Parkinson’s Need You!

The answer is truly in all of us, working together. International collaboration is essential for speeding a cure for the 5 million Parkinson’s patients worldwide.

— Michael J. Fox

 

You may ask why you should participate in Clinical Trials for Parkinson’s Disease.   After all, aren’t they always drug trials?  You say you don’t want to be a guinea pig for a pharmaceutical company.    Well, the good news is, not all clinical trials involve drugs.  The bad news is that many researchers cannot complete their studies because not enough people participate in them.

Since being diagnosed 10 years ago, I have participated in a number of studies.  Some of them on-line, some by telephone, and others in person.  Many provide some form of compensation.  One study was a long-term study though the Alzheimer’s Center at UCLA which recruited people with Neurological disorders to look at cognitive differences.  Three years in a row, I was given a 3 hour cognitive test by graduate students, doing tasks such as recalling as many items as possible from a list of 20 words – our brains usually can process a string of 7 items, which is why your phone number is 7 numbers.  Anything over 7 can be difficult to retrieve.  Other tasks included looking at shapes and being asked to replicate them from memory, repeating paragraphs that are read to you, counting, etc.  Unfortunately this study was discontinued due to lack of funding.

This past week I went to USC – University of Southern California (I had to give the other LA university equal time), to work with Dr. Giselle Petzinger, whose research focuses on the effects of exercise on Parkinson’s.  This time, she is looking at the association between fitness and cognitive performance in Parkinson’s Disease.  She wants to see which PwP’s are doing well cognitively and if there is a correlation with the types of exercise they are doing.  This is an 18 month study that involves 3 visits to USC and using wearable devices for 1-week every 3 months.  I was number 15 in the study.  She needs 35 more people to complete the study, but recruitment is going very slowly.

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Stepping over an “obstacle”

The first day included a 3 hour cognitive assessment!  I remembered a lot of the exercises from the tests at UCLA.   I think everyone uses the same resources for measing cognitive ablility.  Day 2 began with a brain MRI.  Then the fun began.  I was escorted to a lab where I got to try out Virtual Reality.  After putting some sensors on my arms and legs, I put on the VR headset, excited to check it out.  I was in a waiting room of some sort, with all kinds of video games on the shelves.  The 360 view was amazing as I turned my head.  But no, that wasn’t for me to use.  Instead I was to walk down a long hallway (I did this on a treadmill) stepping over obstacles of 2 different heights.  Then I had to do it over and over, each time with different instructions.

Day 3 was even more interesting.

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Looking like a Christmas Tree

I repeated the task from Day 2 two more times and then I spent the next half hour getting even more sensors for my last walk on the treadmill.  Have you ever seen how CGI (Computer Generated Imagery) is done to animate a computer designed animal?  That is what I looked like.  Mr. Twitchy says I looked like a Christmas tree!  This last task was to look at gait and balance.  The treadmill has two separate treads that you walk on.  While I was walking at a fairly quick pace, one of the treadmills would slow down or speed up with no warning.  My job was to keep my balance.  I was tethered by a harness so that I would not fall.  After more gait and balance tests I was sent home with my wearables (watch and heart monitor).  I am looking forward to seeing the results of this trial.

How do you find a study that works for you?  You can start with Fox Trial Finder.  It is easy to register, and you will receive notices of trials that you qualify for.  The Parkinson’s Foundation has been following over 12,000 people in 5 countries with the Parkinson’s Outcomes Project.  Check it out to see if you can participate.  Ask your Movement Disorders Specialist or Neurologist if they know of any trials near you.   Ask your PD friends if they know of anything.  If you are interested in the USC trial, contact me at twitchywoman18@gmail.com and I will forward your info to Dr. Petzinger.

April is Parkinson’s Awareness Month.  My challenge to you for April is to find a way to get involved in research.  You can make a difference in your life and the lives of others.  Think about it.  But not too long.  As the Nike ads say “Just Do It

Can You Live Well With PD?

With the World Parkinson’s Congress coming up in June, I have been considering submitting an abstract for the Poster Display at the Congress.  One of the categories for submission is “Living Well With Parkinson’s Disease”.  I started thinking about what works for me to live well with PD, and then decided to ask the 950+ members of a Women with PD Facebook group that I participate in, what works for them.  On line, we often discuss different symptoms, medications, responses to medications, etc.  But the women in this group also like to talk about the positive things in their lives.

In one long term study,  Complementary & Alternative Medicine Care in Parkinson’s Disease, (CAM Care in PD), Dr. Laurie Mischley, of Bastyr University, is looking at people who are living well with PD with the hope of finding dietary and lifestyle factors associated with a slower disease progression.  The twice annual survey asks about your diet, exercise, medications, alternative treatments, etc.   If you are not familiar with her work, click on the link above to find out more about it and to sign up for her study.

I decided to take a slightly different angle and ask the women what THEY think hedownload.jpglps them to live well with Parkinson’s.  So I posted the following to the FB group in November:

Please list the top 3 things that help YOU to live well with Parkinson’s. Then the flip side – the top 3 things that are obstacles for you:
For example:
Positive: Exercise, Advocating for myself with my doctors, Friendships with other women with PD. 
Negative: Poor sleep, Tremor gets in the way of doing things, Daytime fatigue

This is by no means a scientific study.  As a blogger, I like to poll my readers occasionally on a topic that interests me.  I look for trends in order to write about a topic.   For this poll,  I have about 60 responses so far,and it became clear very quickly that Exercise in any form is the most positive factor for living well.  Friendships with other women with PD is also very important to them.  Having friends with PD means that they have someone who knows how they are feeling and understands what they are going through.  Interestingly, Family-including a supportive spouse- and Faith were tied for third.

On the negative side, Sleep problems, including insomnia, fatigue and more, was the overwhelming winner.  Balance and Gait problems were second and Anxiety was third.

The one thing that was missing is “Staying Active”.  Only a few people mentioned anything related to this.  I realized that it was an important missing piece when I read Blogger Sherri Woodbridge’s Nov. 28 post in Parkinson’s News Today

She says:  Being active involves more than movement on your part. It includes a state of mind to persevere, to keep putting one foot in front of the other, and to not give up even when you feel like quitting.

I could not say it better than this, and yes, this is the one thing that keeps me going.  Since my husband retired 7 years  ago, we have traveled extensively around the world.  We go to the symphony, theater and sporting events, often with friends.  We are active in our community and spend time with our children and grandchildren.  And we both find time to exercise almost daily.  He plays golf, I still play tennis.  Sitting home and doing nothing is not an option for us.  As a result, I do not feel the isolation and depression that plague many people with PD.   I also feel good physically most of the time.   My biggest problem is the fatigue from poor sleep.  But I don’t let that stop me.  I have learned my limits and will rest when I need to, especially when traveling.   10 years after my diagnosis, my progression is still slow and I have not had to change my lifestyle very much.

We are fortunate that today that our doctors encourage exercise and being active, something that Parkinson’s people were discouraged from doing in the not too distant past.  For many of us, living an active life and exercise are the most important things that will make our lives better with PD.  Even if you have limited mobility, try to get out and and do things, even if it is just going to a movie.  You will find that the more you go out and do things you enjoy, the better you will feel.

If you would like to participate in my informal survey,  please send an email to me at twitchywoman18@gmail.com.  This is for all people with Parkinson’s only.  No caregivers, please.

Please list the top 3 things that help YOU to live well with Parkinson’s. Then the flip side – the top 3 things that are obstacles for you:
For example:
Positive: Exercise, Advocating for myself with my doctors, Friendships with other women with PD. 
Negative: Poor sleep, Tremor gets in the way of doing things, Daytime fatigue

 

Tennis Anyone?

Tennis seems to be the perfect exercise to help PD – the hand-eye coordination, sudden quick movements, the thinking process used to execute a shot.  Jan Jackson

Tennis has been one of my passions since I was a child, playing with wooden tennis rackets that we had to store in a wooden frame to keep them from

Image result for billie jean king wooden tennis racket
I wish I still had this racket!

warping. My earliest tennis idol was Billy Jean King and I even had a Billy Jean King tennis racket. When Mr Twitchy and I moved to Los Angeles, playing tennis was an easy way to meet new people.

Eventually the wooden tennis racket gave way to the new lighter graphite rackets in the 80’s and my tennis game improved. My tennis idols and my rackets have changed over the years and I have been fortunate to have attended 3 of the 4 Tennis Open tournaments in the last 10 years. I am hoping that I will be able to get to the fourth, the French Open, in the next few years.

When we moved to a new house and new school for our kids, tennis was again the intro to new friends. In fact, I have been playing in a regular game for over 25 years with three other women whom I met at the elementary school Tennis Tournament Fundraiser so long ago. They are my friends, my confidants.

After my tremor started 10 years ago, they were the first to know about it. When it was difficult to talk about my Parkinsons diagnosis, they were the ones who were there for me, refusing to let me take the easy way out and quit playing tennis. When I told one doctor about them, his advice was to “keep those friends”.  That was the easiest doctor’s order I have ever followed. Tennis has literally kept me going through the worst of times with PD. It hasn’t always been easy. My stamina and balance vary from week to week, my feet don’t always move as well as they should and I frequently lose my grip on my racket for no reason. I have often thought about finding a way to glue my racket to my hand so that I can’t lose my grip.

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My photo of Rafa at Wimbledon, 2010

So I was not surprised to see a website about Tennis and PD posted by PD blogger, Gary Sharpe, about the benefits of tennis for Parkinson’s from a program titled  Educational Tennis For Parkinson.  The only problem is that the article is in Italian!  Fortunately, Google translate came to the rescue.  From their website comes this description of their program:

Tennis by many scholars is considered the most complete sport. The Educational Tennis Program for Parkinson ® program specifically designed and created for those suffering from Parkinson’s disease in the initial and intermediate phase, tends to help them to carry out a sport activity whose main objectives are: to develop cognitive skills, to stimulate the motility of everything the body, develop the coordination, stimulate the respiratory system, stimulate concentration, develop automatisms, develop the metabolic function, favor the reappropriation of a serene relationship with one’s physicality, enhancing one’s own potentiality, support for an improvement in the quality of life . (please excuse grammatical errors, this is directly from the Google translation)

Whew!  That is quite an ambitious statement!  I love the “serene relationship” part.  Overall, I agree with them totally.  Tennis is a great total workout for you, requiring hand-eye coordination (not always easy with PD), quick movements and lots of concentration.

Sharpe also posted an article by Jan Jackson, a woman with PD who plays 🎾, this time in English.   She put into words exactly what it has felt like for me playing tennis with PD.  She increased the amount of time she plays tennis because of PD.  On the other hand, I had decreased my playing to once a week because I found that there was little extra time for tennis in addition to my regular daily exercise programs (yoga, boxing, etc.)  However, I have recently added a second day of tennis, with a “Live Ball”* clinic at the club we belong to, that has really helped improve my game with PD.  I am hoping to be able to add another day of tennis to my workout schedule sometime soon.

My hope is that I will continue to play tennis with my friends, Gayle, Martha and Lenore,  for many more years to come.  Thank you for being there for me all these years.

*Live Ball is a fun doubles king/queen of the courts-type game played where tennis balls are fed by a tennis pro to start points instead of serves.