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!

Desperately Seeking the Right Information

Without getting too bogged down with real “statistics,” a typical diagnosis of Parkinson’s takes 1-3 years from the onset of symptons.  At that point, the doctor often provides a prescription,  a return appointment in three months and not much else.  The newly diagnosed, probably in a state of shock,  is not only in no condition to ask questions, but has no idea where to begin looking for information

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Those of us who are patient advocates meet many other People with Parkinson’s (PwP’s) who have had exactly this experience at the time of their diagnosis; most of us have had it ourselves.  While there is currently no cure for PD, we know that (1) there are a host of things PwP can do to continue to live well, and (2) the sooner thePwP learns of these things the sooner he or she will be able to do so.   These include, among others, medication, physical therapy and exercise.  And more exercise.  And beyond that, exercise.  Did I mention exercise? Once a new PwP enters this world he will learn that there are a huge number of people who have been living with PD  for years and are living activeproductive lives while simultaneouly fighting the progression of the disease.

 

One of the primary goals of patient advocates — one of the goals for writing this blog — is to reach out to Primary Care Physicians and Neurologists (directly or through their patients) to encourage them to ease the shock of the diagnosis and give more information to the patient at the outset and to encourage the patient to ask questions.  It would be a huge step forward if the medical community only made itself more generally aware of the already available lists of Frequently Asked Questions (FAQs) regarding Parkinson’s (see below).

An incomplete list of what patients advocates talk to each other about of things we would like to see made standard parts of the initial diagnosis includes:

1.  Making immediate referrals of patients to a Movement Disorders Specialist (MDS) (rather than to a general neurologist).   An MDS receives additional training in Parkinson’s disease and other movement disorders including dystonia, chorea, tics and tremors.  They are more knowledgeable than a general neurologist about the latest treatment options, the need for exercise and all things Parkinson’s.

2.  Providing materials from the Parkinson’s Foundation, Michael J Fox Foundation, Davis Phinney Foundation, American Parkinson’s Disease Association (APDA), local support groups or organizations, and other resources available for the patients.  These FAQs and other materials can help set the newly diagnosed on a better path to help protect and even improve their quality of life early in the process; the sooner a PwP can take action, the better off he or she will be.

3.  Scheduling a follow-up appointment within a month and encouraging the patient to bring along someone to listen and to help ask questions.

4.  Connecting the newly diagnosed PwP with a patient mentor who can talk to him/her on a personal level about living with PD.   Informally, this could be another patient in the community who is a good role model for the newly diagnosed Parkie.  In addition, several organizations have Patient Mentors (or Ambassadors) who are comfortable in this role and are happy to help.  The purpose is to meet casually and explain — and demonstrate — in a casual lay setting that the PD diagnosis is not the end of the world; it’s not even the beginning of the end of a quality life.

5.  Encouraging them, above all, to start moving.  What seems to be a universal truth is that exercise is the best medicine to combat PD.  Of course, the amount and extent of exercise will have to match the PwP’s overall health an fitness.  But that is fine tuning. An unquestionable first, or at least primary, step must be to get as active as one can as soon as one can.

Until the medical community formally embraces these standards, it is up to us in the lay community to make this information available.  NO newly diagnosed Person with Parkinson’s should be sent home with only a prescription and a return appointment 3 months later.  Given the right information and instructions, the newly diagnosed Parkie will be much more prepared much sooner for dealing with their life with Parkinson’s.

 

On a totally unrelated note, I started reading PD blogger, Tim Hague’s new book “Perseverance: The Seven Skills You Need to Survive, Thrive, and Accomplish More Than You Ever Imagined”.  I am about 1/3 of the way through the book and really enjoying it.  I hope to review it in the next few weeks.

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.

 

 

The California Parkinson’s Disease Registry and other things

First, I want to thank all of you who expressed concern after my blog post last week.  It was a very stressful week which definitely had an effect on how I felt.  I saw my Movement Disorders Specialist on Thursday and she assured me that downloadI am doing ok, I just need to get more sleep and reduce my stress levels.  She suggested meditation, which I have tried before, but never seemed to get into it.  I will try again and hopefully will be more successful.

The California Parkinson’s Disease Registry

Beginning July 1, 2018, a new California Parkinson’s Disease Registry (CPDR) will be implemented.   The California Health and Safety Code (HSC) 103860-103870 requires healthcare providers diagnosing or providing treatment to Parkinson’s disease patients to report each case of Parkinson’s disease to California Department of Public Health.   It will be a statewide population-based registry that will be used to measure the incidence and prevalence of Parkinson’s disease.

From the CPDR website:  “Surprisingly, little is known about how Parkinson’s disease is distributed among different population groups and whether the patterns of disease are changing over time.  California’s large and diverse population makes it ideal for providing important information about this disease.  CPDR will expand our understanding of Parkinson’s disease to ultimately improve the lives of those affected.”

Why do we need Parkinson’s Registries?

When a large population of people have a disease like Parkinson’s disease (PD), it’s essential to have accurate numbers of how many people have the disease, where they live and why they have it. According to the Parkinson’s Foundation, this information helps researchers, healthcare professionals and even legislators determine how many resources should be allocated to addressing and treating a disease  Currently, the National Institute of Health (NIH) has no firm numbers for the incidence of PD in the United States, which has been estimated to be about 500,000- 600,000.  The last major PD prevalence study was completed 40 years ago in 1978.  Because the risk for PD rises with age, the number of people with Parkinson’s is expected to increase dramatically as the Baby Boomer population ages,  The Parkinson’s Foundation Prevalence Project estimates that 930,000 people in the United States will be living with PD by the year 2020. This number is predicted to rise to 1.2 million by 2030.

What the Registry does NOT do:

  • Disclose individual patient information
  • Report you to the DMV
  • Jeopardize your current or future medical care

A quick search on the internet showed that only a few other states currently have Parkinson’s Disease Registries, including Nebraska, Utah and Washington.   More states need to create PD Registries soon, so that they can plan for the increase in services and resources needed for treating PD as the population ages.  If your state does not have a registry, contact the Michael J Fox Foundation or the Parkinson’s Foundation to find out about lobbying your state legislators to create one.

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There are a growing number of best Parkinson’s Diseases blog lists popping up on the internet.  The latest one is  from Everyday Health, an online Health magazine.  The list consists of 10 blogs that they call “truthful and inspiring.”  I am proud to be one of the ten and congratulate the other bloggers chosen.   There are many very good blogs out there, so if your favorite is not on this list, it may be on another.