More thoughts on the WPC in Kyoto

There were many inspirational moments at the WPC.  I have already written about some of them, and will highlight a few more today.

The most inspiring speaker of the WPC was Dr. Linda K. Olsen, who gave the keynote speech at the opening.  Dr. Olsen lost both of her legs and and arm in a car and train accident over 30 years ago.   Many years later she was diagnosed with Parkinson’s.  Her indomitable spirit is amazing.  Enjoy the video of her speech from Tuesday night.  Turn up the volume, because it is a bit muted.

Thursday, June 6

Thursday at the WPC started early.  Ronnie Todaro, from the Parkinson’s Foundation was presenting at Hot Topics at 8:00 am.  Her presentation “A Closer look at the unmet needs, research and care priorities for Women with Parkinson’s” was about the Women and PD Study that I had been a co-chair of for the last two years.

Getting a shout-out from Ronnie Todaro at her Hot Topics presentation was the highlight of my day!

I then went to the PD Movement Lab with Pamela Quinn, which was terrific.  Here is the description of the session from the program catalogue:

“Using a wide range of dance moves, great music, and practical cueing strategies, we use a wide range of dance movements, wonderful music and practical cueing strategies, we challenge the body, defy our expectations, and  Challenges the body, violates our expectations, and enhances our spirit.”

Mr. Twitchy and I went to a showing of the film “Kinetics” (https://www.kineticsfilm.com/) by Sue Wylie.  Then went to get our Bento box lunches for the day, only to find out that there was a glitch with the caterer, who did not provide enough and they ran out of food!  After scrambling to find something to eat, I missed almost all of the noon talk by Nobel laureate Shinya Yamanaka on  “Current status of iPS cells and efforts for medical application”.  I will have to watch the video later.

My final session of the conference was a round table discussion on “Staying positive and engaged after a Parkinson’s diagnosis, advice from a PwP and care partner.”  I decided to check it out because one of my Parky friends was leading the discussion.  Since there was a Japanese interpreter at the session, most of the participants were Japanese and much of the time was spent translating.    I think everyone got something out of the session, but it was hard to tell because of the language barrier.  I had to leave a few minutes early to catch a train to Tokyo.

One thing I learned today is that I apparently missed some very good sessions throughout the three days for various reasons.  Will have to catch up by watching what is available on Youtube. Right now, you can view some highlights by Sarah King at by clicking here. At the end of the conference it was announce that the next WPC will be in Barcelona from June 7-10, 2022.

Game of Parkinson’s

With apologies to Game of Thrones

Image: HBO’s Game of Thrones

The back-to-back surgeries in the Twitchy household created an activity void that needed to be filled. And so, start-from-scratch binge-watching of Game of Thrones (GOT) filled the void. And that created two addicts; and the addicted need their fix. And so, when we arrived in S. Korea for a pre-World Parkinson’s Congress cruise, with the last episode having aired while we were flying, the FIRST THING we did on waking up at 5:00 am our first morning was to watch the episode we had arranged for our daughter’s friend to record, post and send us the link.

But the addiction has had other effects. I am now imagining/dreaming our collective battle against Parkinson In GOT terms. The ruler who kept the neurons in the brain functioning has died, and the battle is on to restore order. Who will win the right to sit on the Iron (Twitchy???) Throne? Ramsey Greyjoy makes us shake. The even more evil Cersei Lannister makes us writhe with diskinesias. Arya Stark fights the frozen faces. And Sansa Stark has the inner strength to endure the hidden symptoms that plague us. The sleepless night walkers are threatening to take over. Is Daenerys Targeryan making us hallucinate about dragons? And what is with Bran Stark and the third eye? Where is Jon Snow when we need him?

Ok, ok, we are not living in Westeros. There are not 7 Kingdoms in our brains fighting for the right to sit on the Iron Throne. However, there are so many different facets to PD that unfortunately cannot be controlled with just one treatment. So, like GOT, we need to find multiple solutions to make our lives better with Parkinson’s. Melisandre (the red priestess) is not going to bring back to life all our dead neurons. We need to make sure that our medications and treatments are working together to make us feel better. If they are not, then we need to find other options that do the job.

Are you a GOT fan? How does your experience with PD relate to GOT? I know its a stretch, but let’s have fun with it. Get a conversation going by replying in the comments. Who knows where it will lead…….

*If you are going to the WPC next week, come by my poster display (#649) on Wednesday from 11:30-1:30. I would love to meet you.

Keeping your Parkinson’s under control when your life isn’t

If you want to go fast, go alone.

If you want to go far, go together.

African Proverb

It seems that once you think everything is under control, something happens to set you back. You are feeling so good about how you are doing, that you forget that you have limits and take on too much to do. (I admit that I am way too guilty of this). Parkinson’s lies in wait until you make that misstep and will suddenly torment you and increase the severity of your symptoms, or bring you a new set of symptoms to deal with.

On the other hand, maybe life is out of control. You have been doing too much and not taking care of yourself. You moved, your child got married, you suffered a loss. You may have felt organized at first, but at some point you realized you are in over your head. You just can’t do everything the way you used to without feeling it afterwards.

You find it hard to make plans because you just don’t know how you are going to feel any given day. One day you feel great, the next night you don’t sleep and fatigue keeps you down the next day.

Finally, You miss exercise for a couple of weeks because you are sick, on vacation or you just don’t have the time. At some point you realize that your tremor has been getting slightly worse every day, or you have become much stiffer. You feel as if you are on a downward spiral. Your meds are not working as well as they should, but you really don’t want to increase the dose. You just don’t feel good, and it is difficult to explain exactly what is troubling you.

What do you do to get out of a downward spiral?

www.deviantart.com

1. Learn to say “no”. Get help where you need it. At home and/or at work. Don’t take on a new project that you know will be overwhelming. It’s ok to slow down a little. I know its hard – I am guilty of overdoing it, pretty much all the time. But remember, you are living with a chronic disease that won’t go away because you are too busy to acknowledge its presence.

2. Take a deep breath – practice breathing exercises, meditation. Parkies tend to be shallow breathers. Get some more oxygen to your brain and clear up the fuzziness between your ears.

3. Get back into your exercise routine. But don’t expect miracles immediately. It took time to get to where you are, so it is going to take some more time to get back in shape and feel the benefits of exercise on your brain again.

4. Get adequate sleep. 4 hours a night is not enough. 7-8 is ideal. However, the last time I think Mr. Twitchy and I ever slept that long was probably in college. We have forgotten how to sleep at night. I have tried sleepy time tea, meditation, yoga for sleep, no iPads, playing games on iPads in the middle of the night hoping to fall asleep, weighted blankets (which do help to some extent) various forms of CBD, etc. etc. It’s ok to take a sleeping pill for a few nights to break the pattern, or at least get a decent amount of sleep for a couple of nights so that you are not a zombie all of the time. Check with your doctor about sleep medications that may be right for you.

5. Get support from your family, friends and PD friends. Let them know how you are feeling and that you need some extra help for a little while. Don’t be a martyr.

6. Check your diet. Are you eating too much protein too close to taking your meds? Has the sugar monster has taken over your diet? If you are not sure what you should be eating, a Mediterranean diet is always a good place to start. Or check with a nutritionist. Dr. Laurie Mischley has done a lot of research on Parkinson’s and diet. Go to her website for more information

And if none of these things help, know that you are not alone. There are always Parkies on-line somewhere who are not sleeping either and are happy to chat in the middle of the night and commiserate with you.

I finally met Parky friends who I had met online, and it reinforced the fact that our common bond of Parkinson’s brings us together – and that we provide unconditional support for each other.

Twitchy Woman was featured today on Parkinson’s Life, a website for Parkies in Europe and beyond. Check out my WPC Diary here.

Exercise Really is Medicine for Parkinson’s

Even before I was diagnosed with Parkinson’s, I have always been a regular exerciser.  I played tennis, went to aerobics classes at the gym, worked with a personal trainer and then found yoga classes.  For the past 10 years, since my diagnosis, I have been more vigilant than ever about exercise, and several years ago, added boxing for PD to my regimin.

And it worked pretty well.  My PD has progressed very slowly.  Off times were rarely a problem.  Life was good.

And then I had surgery on my hand two weeks ago.  Which meant NO exercise at all for the next 3 weeks until the stitches come out.  I can’t get the dressing on my hand wet or sweaty.  So the only thing I can do is walk, which is not enough for me.

About a week after the surgery, I noticed the tremors in my hand and foot were much more noticeable.  Other non-motor symptoms re-appeared.   As the days go by, the symptoms are becoming more apparent.  The only thing I can attribute it to is lack of exercise.

I was talking to my friend, Susan, and she had a similar story. Like me, she had always exercised. After her PD diagnosis, she stepped it up and felt that the exercise really helped. And then life happened. She moved, went back east to take care of an ailing parent, and wasn’t able to exercise for more than a month. One day it all caught up with her and she “hit the wall!” Her tremors were back, other symptoms returned, and one day, she literally could not get out of bed.

Susan started exercising again and her symptoms are improving. She is not quite back to where she had been, but is confident that she will get there soon. We talked about all of the other meds that we take, and how effective they are (or not), but the one thing that we both feel is the most helpful is exercise. If we look at it as medicine, it becomes essential to our treatment for PD.

Dr. Giselle Petzinger, Associate Professor of Neurology at the Keck School of Medicine of USC, has been doing extensive research into the effects of exercise on Parkinson’s Disease and Cognition.  She is a strong believer that exercise will help those of us with Parkinson’s (and the general population as well).  She is currently running a clinical trial that I participated in 2 months ago.  For information on that study, go to my post from March 31, Clinical Trials for Parkinson’s Need You!

I am looking forward to getting the stitches out next week and getting back to exercise.  It will be interesting to see if the tremors and other symptoms calm down as a result.  I feel like I have missed doses of my medicine.  Now I need to take it again and hope for the best.

Kyoto

If you are going to the WPC in Kyoto in a few weeks, please look for me.  I will be at my poster in space #649 during lunch on Wednesday,  June 5 from 11:30-1:30.  I would love to meet you.

Also at the WPC:

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If you have some free time on Monday, June 3 before the WPC starts,  and would like to help set up the Soaring with Hope exhibit, please complete the VOLUNTEER FORM (click HERE) by Friday, May 17, 2019.

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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.