Gratitude for a very full, successful year

Acknowledging the good that you already have in your life is the foundation for all abundance.

Eckhart Tolle

I have a dear friend who is always cheerful and upbeat. What is her secret? Her ritual every morning when she wakes up is to express gratitude for the things in her life. It’s that simple. Apparently she is not alone. When looking for quotes about gratitude, there were many like this one from Oprah Winfrey: “Be thankful for what you have; you’ll end up having more. If you concentrate on what you don’t have, you will never, ever have enough.” 

As the year comes to a close it is often a time of reflection. We look at what we have accomplished in the last year. What we did not get done, in spite of our best efforts. But most of all, it is a time to express gratitude to those who have come into our lives, and gratitude for the things that we have in our lives. Yes, even if you are living with a progressive disease like Parkinson’s, there are some things that you can be grateful for. If you don’t think so, I challenge you to look around and you will find someone or something that you can be grateful for. And if you can, write it down so that you can look at it again next December. Hopefully, like Oprah, you will have more things to be thankful for.

Here are some of my reflections about the past year and what I am thankful for.

First, I want to express gratitude to my family and friends for always being there for me, supporting my in my endeavors, coming to Parkinson’s events with me and not letting me be a “sick person”. You insist that my life has not changed because of PD, so there is no reason to make accommodations. You encourage me to be independant. And I thank you for that.

This fall marked 11 years since the start of my Parkinson’s symptoms. My diagnosis was confirmed a year later by my wonderful Movement Disorders Specialist at UCLA. At the time, she told me that because I was tremor dominant, she thought I had a very slowly progressing type of PD. And she was right. My meds have calmed my tremor, and most people are surprised to learn that I have Parkinson’s. For this I am very grateful.

I have been fortunate to be able to take advantage of many learning opportunities for People with Parkinson’s. 5 years ago I attended my first Fox Foundation event in Pasadena, CA, which opened doors for me. I learned about boxing for PD that day and started a class a month later in Santa Monica, with what is now called Stop-PD. I have been going to boxing ever since. Unfortunately, in the past 5 years, there have been many times when I am the only woman in the class. Those women who attended quickly became friends. And the guys….well, they have been great. Thank you for all of your support. I love being with all of you. You are an important part of my week.

This year marked the 4th anniversary of a group that I started for women with PD in Los Angeles, which is now called Twitchy Women. We are not a traditional support group. We are more activity based, whether it is exercise, a talk by a psychologist, speech therapist, sex therapist or just exploring our creativity and just having fun. The friendships that have been made through this group are wonderful. And the most exciting news in the last few months is that several major Parkinson’s organizations like our concept so much that they have asked us to encourage other women to start similar type groups in other areas. If you want to start a group where you live, please contact me. I am not only grateful for what this group has given back to me and the other women, but am looking forward to expanding the concept and reaching a wider audience. Thank you to all of those special women who have come into my life because we share the common bond of Parkinson’s.

In June, I attended the World Parkinson’s Congress for the second time. This time the WPC was in Kyoto, Japan, so Mr. Twitchy and I, along with good friends that we travel with every year, took a cruise from S. Korea to Osaka, Japan and then spent 3 days touring Kyoto prior to the conference. Our trip was wonderful. Our friends went on to Tokyo and we attended the WPC. There I got to meet many other bloggers who I have only known on the internet, as well as quite a few followers of my blog. I submitted an abstract which was accepted and created a poster for the poster display. That was a lot more work than I expected. I probably won’t do it again, but I am glad that I was able to do it. But the most exciting part of the WPC for me was that Roni Todaro, VP at the Parkinson’s Foundation, was asked to give an early morning talk about the study she had asked me to co-chair, titled Women & PD TALK. Not only did Roni mention me, but highlighted me in her powerpoint presentation. Roni, I can’t thank you enough for the amazing shout-out!

Because of the new relationships with other bloggers that were nurtured at the WPC, I have had the opportunity to participate in several podcasts, conferences, webinars and more. It seems that the more involved you get in the PD community, the more it opens your world up. We are a small but mighty international group of people with Parkinson’s. We support each other, problem solve together, and reach out to others who are new to our community to ease their path on this journey with Parkinson’s. We are living proof that no one needs to go through this alone. And for that, I am extremely grateful.

It has been a busy year, with many gratifying experiences for me. This is not the future I could have imagined 10 years ago, when getting a diagnosis of Parkinson’s Disease meant losing the ability to live a normal life very quickly. With all of the latest developments in research, people are living better and living longer with PD. Maybe this will be the year that the cure is finally found. And for that, we will ALL be grateful.

This a wonderful day. I’ve never seen this one before.

Maya Angelou

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.

Parkinson’s Target Practice and other Things

Sometimes it seems like Parkinson’s Research is a bit like Target Practice.  If you try to come at it from a lot of different angles, eventually something is going to hit the bullseye.  It is almost impossible to keep up with all of the different research projects looking for a cure or even just a way to slow down and stop the progression of PD.

Some examples from this past week alone include fish that sense magnetic fields, effect of different frequencies of DBS on gait, and chaperone proteins. Huh?  Someone please interpret!!!!

  1.  This study from  Michigan State University (MSU) : A fish that can sense the Earth’s magnetic field while it swims could help scientists understand how the human brain works and eventually unlock strategies to help control movement impairments in patients with Parkinson’s disease and other neurological disorders, a study reports.
  2. Low-frequency subthalamic deep brain stimulation (STN-DBS), but not high-frequency STN-DBS, reduces freezing of gait in Parkinson’s patients while preserving their ability to simultaneously process motor and cognitive information, a recent study shows.   The study, “Decreasing subthalamic deep brain stimulation frequency reverses cognitive interference during gait initiation in Parkinson’s disease,” was published in the journal Clinical Neurosphysiology.
  3. Low levels of a specific chaperone  protein might be implicated in the development of Parkinson’s disease and Lewy body dementia, according to new research at   University of Alabama at Birmingham.   Researchers investigated the role of a protein  called 14-3-3θ — a type of protein that can assist other proteins to assume a proper shape. “The study suggests that 14-3-3θ may be a suitable target for efforts to slow the progression of neurodegenerative diseases, although more work is needed,”  according to  Talene Yacoubian, an MD and PhD, associate professor in the Department of Neurology at UAB.

Other interesting stuff:

  1. I just finished listening to
    Perseverance: The Seven Skills You Need to Survive, Thrive, and Accomplish More Than You Ever Imagined
    by fellow WPC blogger Tim Hague.  He tells his fascinating story of growing up as a bi-racial child in a large, warm adoptive family, his Parkinson’s disease, how he and his son, Tim, Jr. got into The Amazing Race Canada (Season 1) and finished in first place, and more.  I really enjoyed the book and finally met Tim last week at the Davis Phinney Victory Summit in LA.  Well done, Tim!
  2. And in the “what was I thinking department“, Mr. Twitchy and I went to the Fox Foundation’s Parkour 4 Parkinson’s event in LA a few weeks ago.  I am not sure what got into me, but I had to try the course.  According to PD Ninja, Jimmy Choi, there were only 4-5 of us Parkies there who actually tried it.  Mostly it was agile kids and teenagers having a great time. (watch for the young girl behind me on the ropes).  I should have known better, but once I was there, any brain cells that I still have left apparently forgot that I am not in Middle School.  Here is the video that Mr. Twitchy took of my attempt at being a Ninja Warrior!

What’s Your Parkinson’s IQ?

You have just been diagnosed.  Or you have been living with PD for 20 years.  How much do you really know about Parkinson’s?  What is your Parkinson’s IQ?  Take this test and find out:

  1.  MDS stands for  a) multiple doctors who treat your Parkinson’s  b) Movement Disorders Specialist c) My Dog Spot
  2.  Dyskinesia is a) Strange, jerky movements b) You can’t remember song titles c) Bad dancing at the Disco
  3.  A DaTSCaN is what?  a)  a CT scan for Dogs  b) a brain scan that helps diagnose Parkinson’s  c) I have no idea
  4. What are internal tremors ?  a) shaking in your house  b) small tremors before an earthquake  c) the feeling that you are shaking inside your body
  5. Dystonia is  a) uncontrollable and intense muscle spasms  b) bad sounding music  c)you are tone deaf and cannot carry a tune
  6.  Parkinson’s can be caused by  a) pesticides  b) genetic mutations  c) traumatic brain injury d) sometimes we just don’t know  e) microbes in your gut f) all of the above
  7. Everyone with Parkinsons has visible tremors. a) true b) false
  8. Women account for what percentage of people with Parkinson’s? a) 10% b) 35%. c)50% d)75%
  9. The average age of onset for Parkinsons is a) 40 b) 50 c) 60 d) 70
  10. Research has shown that Exercise is one of the best things you can do to live well with Parkinsons. Which of the following exercises are recommended? A) running b) swimming c) yoga. d) boxing. e) dancing f)cycling g) tai chi h) all of the above I) none of the above
Correct answers: 1 b,  2 a, 3 b, 4 c, 5 a,  6 f,  7  b,  8 b,  9 c, 10 h

How did you do?

0-5 You need to read to the end of this post and then take a look at some of my favorite websites and books about PD

6-8 Almost an expert, a little more studying and you will be a……PreviewInstanceData.jpg

9-10 PD Superstar! You can write this for me

The Answers:

  1.  MDS stands for Movement Disorders Specialist, a neurologist who has received extra training in Parkinson’s Disease and other movement disorders.  If you are currently seeing a neurologist, you may want to consult with a MDS  occasionally to make sure you are getting the right information and treatment.
  2. Dyskinesias are involuntary, erratic, writhing movements of the face, arms, legs or trunk. They are often fluid and dance-like, but they may also cause rapid jerking or slow and extended muscle spasms. They are not a symptom of Parkinson’s itself. Rather, they are a complication from some Parkinson’s medications. (Parkinson’s Foundation website)
  3. DaTSCAN™ is a specialized imaging technique that allows doctors to capture detailed pictures of the dopamine neurons in your brain. This technique involves the use of a radiopharmaceutical agent (a chemical compound containing an isotope, or radioactive element). The radiopharmaceutical agent is injected into a vein and taken up by the brain’s dopamine cells. The cells can then be detected through SPECT (single photon emission computed tomography) scanning. In this way it is possible to determine whether there is a reduction in dopamine cells, which usually occurs in the presence of Parkinson’s disease. (Michael J Fox Foundation)
  4. Internal tremors seem to be a well kept secret among People with Parkinson’s.Internal tremors are shaking sensations felt inside the body. They occur without visible movement, which external tremors produce.   A person may experience internal tremors in the trunk, arms, legs, or internal organs.
  5. Dystonia is a sustained or repetitive muscle twisting, spasm or cramp that can occur at different times of day and in different stages of Parkinson’s disease (PD). People with PD most commonly complain of a painful dystonia of the foot on their more severely affected side. (Parkinsons Foundation)
  6. Most people have Idiopathic PD, meaning there is no known cause.  A small percentage have a genetic mutation (LRRK2, PINK1 or GBA), traumatic brain injury or pesticide exposure as their cause.  Finally, the latest research shows there may be a connection between microbes in your gut and PD.
  7. Most people with PD do not have visible tremors at the beginning  They may have stiffness, Dystonia or other symptoms that are not readily visible.  Some people with visible tremors do NOT have Parkinson’s.  They may have Essential Tremor or some other type of tremor.
  8. Men are diagnosed more than women by a margin of about 2:1.  However, it often takes women much longer to get a diagnosis, especially if pre-menopausal. (more on that in a future post)
  9. The average age for onset is 60. Although aging increases the odds of having PD, we are not all old.  Persons diagnosed under 50 are considered young onset or YOPD.  Michael J Fox is a prime example of someone diagnosed at a young age.
  10. Exercise in any way, shape or form is recommended, as long as you do not do something that will cause injury.  Start slow if you have been inactive for a long time, either with a physical therapist or personal trainer.  The more intense exercise you do, the better, showing longer lasting effects.  Walking the dog, briskly, PD Dance classes, PD Boxing classes, yoga classes are just a few suggestions.  Find something you like so that you will continue to do it.  Just do something everyday.  You will feel better, get out of the house, and maybe even find a support group among your peers.

The bottom line is, to live well with Parkinson’s, you need to do some homework.  Get out and exercise, meet other people with Parkinson’s who you are comfortable talking to, read about Parkinson’s (but not too much).  There are a lot of resources available to you. Most importantly, know that you are not in this alone.   There is a large community of people with PD whom you can connect with in support groups, exercise classes or on-line.  With their help, you too, can become a PD Superstar!

An American Ninja PD Warrior

 

Once I restarted my swing and made my final reach, I knew all I had to do was make that last swing. This is when Mr. PD showed up though.   Jimmy Choi

I am not a fan of Reality TV.  The closest I came was when my daughter was designing clothes and we watched Project Runway together for several years.  At some point, we both became bored with it and stopped watching.  Every season, every episode followed the same formula.  I have watched Top Chef a few times, mostly on airplanes when there is nothing else of interest, and guess what, it followed the same exact formula, just substituting chefs for fashion designers.   Nothing original in these shows.   Is there a difference between “The Voice” and “America’s Got Talent”?  I could not tell you, except that Simon Cowell seems to be everywhere.

Tonite, I watched American Ninja Warrior (ANW) for the first time because of Jimmy Choi.  If not for him, I probably would have avoided it completely.  I am sure that so many others with Parkinson’s watched for the first time, too.  Jimmy Choi’s second appearance on ANW was a reason for us to come together and celebrate.Image may contain: 1 person, outdoor

So who is Jimmy Choi?  An inspiring father of two who was diagnosed with Parkinson’s Disease at age 27.  One day he came across a magazine article about a person with PD who was running a marathon.  That article motivated Jimmy, who by that time had gained significant weight and was walking with a cane, to run a 5K race.  Then a 10K race, 1/2 marathon and eventually full marathons.  It literally changed his life.  He lost weight and his PD symptoms became less severe.  Jimmy became an inspiring model of the positive benefits of exercise for a person with PD.  All of this led him to become a spokesperson for the Michael J Fox Foundation.

Tonight, he is appearing for the second time on American Ninja Warrior in an effort to spotlight the need for a cure for Parkinson’s.  Last season he made it to the regional trials in Kansas City, but fell in the middle of the course and could not complete it.  Jimmy was a fan favorite, and was brought back by ANW to try again this year.

We watched, cheering him on through the first two obstacles, watching his tremor become more visible as he became more stressed by the tasks at hand.  At the end of the third obstacle, it became clear that his tremor and weakend grasp were going to win this time.  As he said “Once I restarted my swing and made my final reach, I knew all I had to do was make that last swing. This is when Mr. PD showed up though.”  Jimmy fell into the water as he tried so hard to reach that last ring.  We felt like we were falling into the water with him.

The thing that most impressed me was how hard Jimmy worked, inspite of having PD, to get to this point.  He had a mission – to stop making excuses and take control of his life when things were not going well.  As he reached eached milestone, 5k, 10k, etc, he set new goals.  He was not content with staying in one place.  He had to keep working harder and harder, eventually becoming our American Ninja PD Warrior.

Jimmy did not fail last night.   He inspired so many others watching him to get moving, to improve their lives while living with Parkinson’s.  And for that, we thank you Jimmy.