Making A Clean Sweep?

“We should be choosing what we want to keep, not what we want to get rid of.” Marie Kondo

My kids have been bugging me to get rid of things in my house.  They tell me that I have too much stuff.  When I point out that some of it is theirs, they don’t want it either, but I should keep it here for them anyway, either because they can’t bear to part with it or they claim they don’t have room for it.

We have been inImage result for broom sweep our house for 30 years, long before Parkinson’s moved in as a permanent resident.  Raising three children and an assortment of dogs and hamsters kept us busy for many years.  The kids have all moved out, we are down to one deaf 14 year old dog,  and we don’t even notice all of that “stuff” until one of our daughters calls attention to it.  Where did it all come from anyway?

We are trying to go through things when we have a free hour or two.  Neither Mr. Twitchy nor I have the patience to do this for longer periods of time.  However, we do need to make a stab of cleaning out the house.  So I turned to my old pal,  Marie Kondo’s book:  The Life-Changing Magic of Tidying Up: The Japanese Art of Decluttering and Organizing which was all the rage a few years ago.  Her basic philosophy:  When going through your things, hold each object and ask if it brings you joy.  If not, get rid of it.  And when you get rid of the object, say “thank you and goodbye”.

But Marie Kondo did not understand Parkinson’s.   We cannot choose what we want to get rid of.  Parkinson’s takes things away from us, no matter how precious they are.  Things that once brought “sparked Joy” are often reminders of who we were in a life before PD.  We don’t want to forget what we could do before, so we can’t let go.  Things we took for granted, such as driving, are challenged by the Parkinsons visitor in our homes.  Stairs become an obstacle course and tremors try to keep us out of the kitchen, away from sharp objects.   With Parkinson’s in the house, many things may not bring us joy anymore for a variety of reason’s, so do we just get rid of them?  It took us more than 15 years to part with the ski’s that we no longer used, because they reminded us of those wonderful times on the ski slopes with family and friends.  We knew we could not ski anymore, but year after year we put off giving them away.  The memories were just too strong to ignore.

And then there are all of those “souvenirs” from our travels around the world.  When our youngest went off to college, we started taking wonderful vacations and I often joined Mr. Twitchy on business trips around the world.  There was always something fun to bring home as a reminder of those trips.  Recently we realized, maybe we need to stop bringing back so much stuff.  It is taking over our house, as our daughters pointed out to us.

So the purge begins.  It often takes more than one time going through a closet or bedroom to determine what we no longer want.  Do we really need to keep all of those give-away t-shirts in ugly colors?  Oh, but that one was from the night Mr. Twitchy played guitar with his law firm band at the Whisky (where all of the famous rock stars played in the 60’s and 70’s).  So what if it is full of holes?  Or what about my calligraphy supplies from 20 years ago.  Many tubes of ink and paint are dried up.  Other things are missing.  It is difficult for me to write with Parkinson’s affecting my right hand.  But that is who I once was – a calligrapher who designed invitations.  How can I dispose of these things that remind me who I was before Parkinson’s?  This is the emotional aspect of “cleaning house”.  You know in your head, that you should get rid of those 4″ heels that you can no longer wear because of PD, but your heart just won’t let you.  How do you make that decision?  I just keep the shoes in my closet so that I can see them.  I can always dream, can’t I? (A certain Parkinson’s Diva I know would wear them anyway 🙂 )

Going through the things in my living room last week,  I realized that I really don’t need to keep everything out.  Some of it can be put away and rotated in from time to time, bringing new memories to replace the old ones.  The same goes for many other things that we have collected over the years, including books.  So many things that once seemed important no longer bring us “joy”.  With Parkinson’s living in our house, our priorities and our interests have changed.  It is time to let go of some of those things. but not all them.  We still need them around as reminders of who we really are, even with Parkinson’s.

A classic from George Carlin about “Stuff”.  Enjoy!

The World Parkinson Congress and why you should be there with me!

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The 5th World Parkinson Congress will take place in Kyoto, Japan on June 4-7, 2019. These meetings are unique and deserve both our attention and support.

It is not just that the meeting brings together doctors, patients, researchers, caregivers, and other allied professionals together for 4 days to talk about all  things Parkinson’s. It is also not just that there are a variety of session formats and sizes that will highlight new research, models of care, and collaborations that are changing the lives of those living with Parkinson’s today.

What really sets this meeting apart — and the main reason I am going for the second time — is that People with Parkinson’s (PwP’s) are centerpieces and not just observers.  We are welcome to participate in any sessions that interest us.  We are encouraged to lead a session, to submit papers,  posters, videos and other media and messages.  In other words, we are true equal partners and contributors in every sense imaginable.  (Full disclosure:  I am an official blogger for the conference and in that capacity, will be sharing my experiences there.  But having attended the 4th Congress two years ago in Portland and enjoyed and learned from it immensely, I would be going to Kyoto in any event.  And it’s a trip to Japan.)

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Parkie the Raccoon Official Mascot of the WPC

If it is even remotely possible that you can attend you owe it to yourself to seriously consider it.  What can you expect?

  • The opportunity to meet people from around the world who are making a difference for those of us living with Parkinson’s.
  • The opportunity to get to know other PwPs from around the world and to make new connections and, quite possibly, meaningful and close friends.
  • The opportunity to learn the most up-to-date news about all things Parkinson’s.

There is, literally, something for everyone including PwPs and their caregivers/family.   (I told  Mr. Twitchy not to attend Portland because I worried there would not be anything for him.  Big mistake.  So I asked him to come this time and he is very much looking forward to going.  Did I mention it’s a trip to Japan?)

Registration begins next week on September 10.   The website is https://wpc2019.org/ (or you can just click here).  If you are interested in volunteering, click here for more information.  If finances are an issue, travel grant applications will also be available in December.

One last personal pitch.  Before you go, or even if you cannot go, make sure to participate in our “messages of hope.”  Three women who became good friends of mine at the 2016 WPC– Naomi, Clara and Amy — were so inspired that they created a global project, Soaring with Hope 4 PD,  to promote hope for People with Parkinson’s Disease.  Their goal is to collect at least 12,000 messages of hope to be written on origami Cranes that will be part of an art installation at the Congress.  Let’s all take the time to contribute to that.

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* As an blogger, my “official” duties will be sharing my experiences.  But I hope to do more than that.  It would be wonderful to meet any of you who will be attending and also to create a photo gallery on the blog of as many of the PwPs I meet there as possible.  So please let me know if you plan to go.

 

 

 

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.

Thank you Alan Alda

I decided to let people know I have Parkinson’s to encourage others to take action. I was Diagnosed 3 and a half years ago, but my life is full. I act, I give talks, I do my podcast, which I love. If you get a diagnosis, keep moving!

Watching Alan Alda’s interview on CBS this morning was inspiring and uplifting.  Mr. Alda could possibly be the best celebrity spokesperson, after Michael J Fox, for getting the word out that Parkinson’s is not a death sentence.  In a 7 minute interview, he covered so much of what my fellow bloggers and I have been writing about, and the most important message he gave is to “keep moving.”  I can’t repeat that message often enough, because it has worked so well for me and many other Parkies that I know, for the last 10 years.

Watch his inspiring video here:

https://www.cbsnews.com/video/alan-alda-reveals-parkinsons-disease-diagnosis/

Alda insisted that his doctor test him for Parkinson’s after reading an article about how one of the early signs of Parkinson’s is acting out dreams, which he was doing.   One of his first symptoms a short time later was a twitch in his thumb.  His reaction was not fear.  He wanted to help his family understand the disease and stressed that each person with Parkinson’s experiences the disease differently, even from day to day.

He sees PD as a puzzle to be solved.  You have to figure out the pieces of the puzzle that work for you to carry on a normal life.  It is a challenge that you must meet and you have to find a way to approach it.  He enjoys solving puzzles, something that I enjoy as well.

Alda approaches life with enthusiasm and hopefully will inspire others to do as he does:  keep on moving.  He boxes 3 times a week, plays tennis twice a week, and marches to Sousa music.  He says that marching to music is very powerful for PD.

Most importantly, he wants to get the word out that Parkinson’s Disease should not be feared and that there are things you can do to live well with PD.

“… I think because I’m sort of well-known, it might be helpful to people to hear the message that there are things you can do. You can learn about things and not follow quackery, but find out what real science is coming up with. That helps. It helps to keep moving. It helps to move rhythmically,”

I hope that Mr. Alda will consider coming to the World Parkinson’s Congress next June in Kyoto.  His message of hope is powerful and it needs to be shared with the Parkinson’s community and with the world.