Tripping into the new year

Did you just fall? No, I was checking if gravity still works.   Anonymous

Somehow, when things seem to be going well, something happens to bring you back to reality.  I fell twice this past week, after having gone months without a fall.  Once when I stepped on the edge of the sidewalk and my foot gave way, and the second time in someone’s home, when I was too busy talking to someone to see a one inch step in front of me.  Both times, I fell hard, with no chance of recovering my balance.  The second time, I actually injured my self.   I landed on one knee and the opposite hand, which was holding my cell phone ( I think).  The cell phone apparently dug into my hand, resulting in immediately swelling and pain.  Fortunately, x-rays showed no broken bones, so I am left with a sore hand and wounded pride, both of which should subside quickly.

But these incidents serve as a reminder that when living with Parkinson’s, we must always pay attention to our surroundings, more than usual.  You never know what dangers are lurking ahead to take you down.  A person without PD and good balance, will usually manage to stay upright when tripping on an uneven sidewalk.  They will start to fall, but catch themselves.  But with PD, it is a different story.  My wonderful husband, Mr. Twitchy, said that I fell like a tree off that sidewalk.  I never had a chance against gravity, as I would have before PD.

Image result for trippingWhat can a Parkie to do to minimize the chance of falling?  Walking poles can help, but only if you remember to use them. I really make an effort when walking up and down steps to use the handrail, and that has helped a lot.  Uneven steps have been a challenge for a long time.  Unfortunately there isn’t always a handrail when you are out on a sidewalk.  You need to look down at the sidewalk and look ahead at the same time so you don’t walk into anything in your way.  Sounds easy, right?  Not always, especially on a crowded sidewalk.

And then there is the cellphone, which is a major distraction and probably dangerous to use while walking (as much as when driving), but we all do it anyway.   Mr. Twitchy keeps telling me to put it away while walking.  He is concerned that I am really going to hurt myself one of these days.  He is probably right, but don’t tell him I said that.

Image result for quotes about tripping and fallingFinally, I can’t help wondering if the recent falls are signs of changes in my Parkinson’s symptoms.  And that scares me more than anything else.   Mr. Twitchy keeps reassuring me that I am ok, that I just need to pay attention to my surroundings more.   And I really hope he is right about that.

 

On a totally different subject, please check out Soaring with Hope for PD – Parkinson’s on Facebook.  This is a project created by 3 friends of mine who are all living with PD.  Their goal is to reach out to the Parkinson’s Community worldwide and bring at least 10,000 origami paper Cranes, each bearing a message of hope, to the WPC in Kyoto, 2019, to be displayed in a beautiful art installation.

 

 

 

Time Out

When was the last time you spent a quiet moment just doing nothing – just sitting and looking at the sea, or watching the wind blowing the tree limbs, or waves rippling on a pond, a flickering candle or children playing in the park?     

Ralph Marston

There is something to be said for taking time out and going somewhere where you have no responsibility and it is ok to do nothing for a week. For Mr. Twitchy and me, that means going to Hawaii, preferably Maui, for a week in the winter. No kids, no place we have to be, no obligations. Just us and maybe, if the timing is right, the whales.

Neither Mr. T nor I are good at just sitting. We like active vacations, with every day planned to the max. But we discovered one year by accident, we can sit on the beach for hours at a time, just watching for the whales, never feeling the need to do anything else.

It’s like meditating, but instead of looking inward for your zen, you are lulled by the ocean waves and the occasional whale spout. What more could a person want?  Well, maybe a massage and sunset yoga on the beach. Truly a great place for a Parkie to recharge.  And feel better, too.

So here we are, just 24 hours after arriving, the most relaxed either of us has been in a long time.  The pace in Hawaii is much slower and it doesn’t take long before you slow down, too and feel the spirit of Aloha.   I highly recommend it.  Now if we could just find some whales, everything will be perfect.

IMG_3099.JPG
Sunset at Wailea, Maui 1/9/2018

 

Time out also means keeping this short.  Back with a regular post next week.

Aloha:     Aloha is a value, one of unconditional love.
Aloha is the outpouring and receiving of the spirit.

Some suggestions for a Parkie New Year

New Year’s Resolution:  Be More Awesome than last year.

Have you made your new years resolutions?  Are there things that you want to banish from your life?  New things that you want to embrace?  Something you have always dreamed of doing, but never thought was attainable.  Should you wipe the slate clean and start over in the new year?

At yoga this morning, my yoga instructor had an interesting view about making resolutions for the new year.  Look at something that has been a problem in the last year.  Don’t banish it.  View it as a small person to embrace.  I had always looked at Parkinson’s as the Elephant in the Room, to be banished in whatever way possible.  He says to look at it as a small person instead and embrace it.  By looking at PD through this lens, look at the positives things about it and how you can overcome the negative – I know that is difficult – and see how you can manage your PD better.

 

With that in mind, knowing that  Parkinson’s can always throw a wrench in the best made plans, here are some of my suggestions for 2018.

  1.  Keep on exercising as much as possible,  a minimum of 5 days a week, including more strenuous exercise at least 3 of those days,  As a friend from my boxing class said, because of all of this exercise, he is in the best shape, physically, that he has ever been.  I agree.  I am definitely stronger than I was before my diagnosis, even though I had been exercising for years.  Focusing on what exercise I need to do to keep moving, I am also in the best shape I have ever been.
  2. Try to learn something new.  Yes, that small person may have been the reason that you had to stop doing something you enjoyed, so take that time and learn to play an  instrument, learn a new language, take that class you never had time for before.  I started taking piano lessons 4 years ago after a 50 year hiatus.  It helped my hands become less stiff, and I have been having a great time.  And don’t forget that  we have been told many  times that learning something new helps to reconnect some of the neurons in the brain, otherwise known as Neuroplasticity.
  3.  Do not identify yourself as “sick“.  There has been a debate over the last few weeks whether Parkie’s are “sick“.*  Many prefer to call it a chronic condition.  You can  give in to it and be a victim of PD, with all of the negative connotations that come with the word “disease“.  Or you can choose to fight back and not let Parkinson’s win.  In other words, embrace the “small person” in order to live a productive life.
  4. Make a few resolutions that are within reach.  Getting out of the house more often,  visiting friends, eating better, etc.  You know what you can achieve.
  5. Resolve to be better informed about the latest developments in Parkinson’s research.  There is a lot of good stuff happening and it is hard to keep on top of it.  Subscribe to a few PD newsletters that you like.  Too many and you will be overwhelmed.  All of this research can impact you sometime in the future, so the more you stay of top of it, the more prepared you will be when you see your doctor.
  6. Take that new information and write down a few questions for your doctor before every visit.  Bring your care partner with you if possible so that they can become part of the conversation.   Ask about new treatments that may be appropriate for you.  And be honest about how your current treatment is working.  If you are not seeing the results you had hoped for, your doctor needs to know in order to make changes in your meds, therapy, etc.
  7. Finally, add a few resolutions that are a reach. You may not get there, or maybe, just maybe, you will surprise yourself and find yourself doing something that you always dreamed of but never thought would be possible because of Parkinson’s.

Image result for new years resolution

 

*read “Are People with Parkinson’s Sick” in Parkinson’s Life 

Looking back at 2017 and forward to 2018

Your success and happiness lies in you. Resolve to keep happy, and your joy and you shall form an invincible host against difficulties. Helen Keller

It’s that time of year again, when we look back to see what we have accomplished, and look forward to the challenges and opportunities of the year ahead.

First, I want to thank all of you, the readers of this blog, for following me this past year.  It has been an adventure for me.   I hope that we will continue this dialogue for many years to come.

It has been 9 years since my double diagnosis of Parkinson’s and Breast Cancer.  Hard to believe that it has been that long.  I am doing quite well, with my symptoms mostly relieved by medication and exercise.  Of course there are ups and downs, especially while living with Parkinson’s.  But for the most part, nothing holds me back.  Mr. Twitchy and I have been traveling extensively, and plan to continue going places near and far, as long as we can.

Some of the highlights of our past year:

  1. The best part:  The continued growth of this blog has been a blessing beyound description.  The ability to connect with so many, to share information — and inspiration — with each other, to confirm that we are not alone and that we are, in fact a community, has brought joy and meaning that is difficult to put into words.  Let’s continue to read and comment  and inform each other; and it would be a thrill to meet any (and maybe many) of you at the Kyoto World Parkinson’s Congress in 2019.
  2. The most curious part:  The post with the most views in 2017 was actually from 2016; “Breast Cancer vs Parkinsons” discussed how the diagnoses are seen so differently, with the former being “acceptable” and the latter something to keep hidden.  The dichotomy seemed to resonate with a lot of people.  Sex and the PD Woman came in a pretty distant sixth place.  Not sure what that means.  (Maybe an update with pictures in 2018?)
  3. The most humbling part:  Being named one of Stanford Medicine’s Favorite Parkinson’s Blogs, one of Feedspot’s 50 top Parkinson’s bloggers (there are a lot of great bloggers on both lists, including many of the bloggers that I have been following since long before I began writing this blog) and being chosen as an official blogger for the 2019 World Parkinson Congress.
  4. The most exciting part:  Working with the Parkinson’s Foundation to create the study Women & PD TALK,  which grew out of the Women & Parkinson’s Initiative two years ago.   Led by the Parkinson’s Foundation and funded through the Patient-Centered Outcomes Research Institute (PCORI),  Women and PD TALK is the country’s first national effort to address long-standing gender disparities in Parkinson’s research and care based on the recognition that the disease affects the sexes in different ways.  Its goal is to develop new patient-centered recommendations to improve the health of women living with Parkinson’s.  It has  been a pleasure to work with Allison Willis, M.D., University of Pennsylvania and Megan Feeney, MPH, Parkinson’s Foundation, two true luminaries in the Parkinsons world. We have been privileged to work with teams of Patient Leaders and Health Care professionals who are planning forums in 10 different locations.  The first forum was in San Francisco in December and offered an exciting start that exceeded our expectations.

Some exciting prospects for 2018:

  1. The Women & PD Talk Forum in Los Angeles, on January 27, which I am honored to co-chair with Adrienne Keener, M.D. and Ali Elder, PT.   This will be the 3rd of the 10 forums being held around the US.
  2. The anticipated report and recommendations from Women & PD TALK  for improving care and outcome for Women with PD.
  3. Working with the World Parkinson Coalition to get ready for Kyoto in 2019
  4. Watching for, and sharing with you, the latest news on PD .  We seem to be inching closer to finding the root causes of Parkinson’s and possible treatments to reverse the damage.  Will this be the year for the big breakthrough?
  5. Oh, and we are expecting our 4th grandchild in May.  So there’s that, too.happy-new-year-2018-animation-fireworks-6062126467.gif

Working up a Sweat

Intense treadmill exercise can be safe for people who have recently been given diagnoses of Parkinson’s disease and may substantially slow the progression of their condition.  The New York Times.

A lot has happened in the Parkinson’s world this past year.  We have heard a lot about the connection between the gut and Parkinson’s.  And faulty genes, mitochondria, stem-cell treatments, ultrasound treatments, repurposing of drugs, and on and on.  Each month brings some new theory that could just be the breakthrough we were looking for. A month later, there is yet another new finding that could be the one.

But let’s not forget about exercise.  If you have been following me, you know that I exercise a lot.  I go to Boxing for PD classes, yoga and still manage to play some tennis. Last week’s big news was a study published in the NY Times about the benefits of intense exercise for PD.  There have been a number of studies over the past 10 years that have looked at exercise for PD, with varying outcomes.  But this one was apparently the first set up as a clinical trial.   For the new study, which was published in JAMA Neurology, the researchers decided to treat exercise as if it were a drug and carefully track the safety and effectiveness of different “doses” of exercise in a formal Phase 2 clinical trial.  In the trials, those patients in the high-intensity group had better outcomes.   Their findings:  “High-intensity treadmill exercise may be feasible and prescribed safely for patients with Parkinson disease.”  As someone who emphasizes exercise, this did not surprise me.

About six months ago, Mr. Twitchy and I acquired a Peloton Bike.  In case you’ve managed to miss the much-played commercials for Peleton showing a mom exercising on her Peloton Bike in her living room,  while her kids play quietly nearby (whoever dreamed this up does not have small children), the Peloton Bike is a Spin Bike for your home.   It’s not cheap and there is a monthly fee for “attending” classes (either live or “on demand”)  You can log into numerous classes led by cute, young, and way-too-fit instructors, who guide you through a workout while you watch on the big video screen attached to the bike.

If only riding my Peloton would make me look like her!

Classes range from at 10 minutes to 90 minutes long.  The instructor encourages you to move to the beat of the music and to adjust your resistance to increase or decrease the intensity (which simulates biking up and down hills).

This is not a commercial for Peleton.  While I have never been a big fan of exercise bikes (or real bikes for that matter), this is fun!  And it is some of the most intense exercise I have done.  Being competitive by nature, I try to keep up with that cute guy on the screen, and the cadence and resistence calls he makes.  Although not always successfull, I can feel myself improving and I have worked my way up to 20 minute classes, frequnetly ready to drop at the end of the session, but stronger for the effort.  I never went to the spin classes at the gym.  The thought of going to one of those classes in a hot sweaty room with 25 other people was terrifying, so I avoided them.  Now, in the privacy and comfort of my own home, I can choose whatever class I want, and quit if I want to, or scream at the instructor, or at myself,  when I can’t keep up.  The best part, is that I am getting the benefits of intense exercise that the experts now say will keep me going and going and going…….

WARNING:  When starting any form of strenuous exercise, please consult your doctor first.   This is NO exception.  In fact, you may want supervision by a trainer or Physical Therapist until you learn what you can do on the Peleton or any other resistance  training bike. It is much too easy to overdo it, which could lead to other problems.