around the net

This morning I had a good laugh after venting in my mind about PD studies. Each morning as I have my coffee, I review the dozens of sites that share the latest information and studies about PD. Some are fascinating and I want to dive in and learn more. Then there are other days, they must be my grumpy mornings, I read the headlines and I want to scream, “who cares if people with blue hair, are ambidextrous, and speak three languages are potentially more likely to get PD, find a cure!”. Now, that’s not the real headline, and my apologies if you fit all three categories, but that’s what it feels like when I see studies that I’m sure have sounds reasons for being conducted, but my meager brain doesn’t understand them. But I’m calm now and here are a few of my favorite articles around the web on Parkinson’s recently. Enjoy your weekend. 💖

~Twelve Suggestions/Ideas for Living Well With Parkinson’s - Very helpful reminders to practice.

~ Seven things that hurt Parkies - Allison always has interesting and humorous insights.

~ New extended release carbidopa/levodopa IPX-203 under FDA review - Results show almost an hour of better “on time”.

~ Researchers discuss link between iron supplements and Parkinson’s

~Disease Modifying Drugs…Hope or Hype? - This was live on YouTube and had an interesting panel of speakers and discussion.

(photo & recipe): smitten kitchen

traveling with parkinson's

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I’m traveling this week to visit my son Austin in San Francisco. I’m so excited to spend time with him and it’s the first trip that I’ve taken since the pandemic started. Plus, I get to wear a sweater (trust me, if you live in Hawaii, it’s a big thing).

I’m fortunate that my symptoms are pretty manageable so I won’t have to make too many preparations for traveling, but I do want to be prepared and make the most of my trip. My right side has more motor problems like tremor and dyskinesia, so I’ve chosen a seat on the plane so my right side is either next to the window or the aisle. It’s less distracting to the person next to me and makes me feel more comfortable during the flight. If I’m on a long flight, I like to be on the aisle because it’s easier to get up and stretch my legs or use the restroom.

Traveling from Hawaii always takes a long time with many being overnight flights, and I cannot sleep a wink on a plane. Which means I’m a wreck when I arrive, so I try to plan my trip with only waking hour flights. That can mean I have to add a few connections and/or stay overnight on a connection but for me that works out much better than losing a nights sleep.

Next is packing. I’ve got my hospital kit for an unexpected hospital trip which I highly recommend if you don’t have one. For home or traveling, it’s free in the US, you just pay for the shipping. If you’re out of the US there are some free downloadable forms and you can create your own bag.

Take photos of my medication bottles, ID, Covid-19 vaccination card, & credit cards in case I lose any of them I have all the information. Also a tip for even at home is to take a photo of your Covid vaccination card and your ID in the same photo. When I go somewhere that requires it, I don’t have to fumble looking for both.

Check my phone apps that I use for traveling and make sure the passwords are auto loaded, and any credit card information in the app is ready to go. For this trip I’m using Uber/Lift, my airline app, google maps, and the TSA app which is the government travel app. Another tip is before I leave home I go onto google maps on my computer and I pin/star all the places that I plan to visit. Then it’s easy to locate when I’m looking at the map on my trip. But the funnest part is that when you’re done with your trip, you can look back at the map and you have an instant travel log.

Pace out my day. I tend to have a laundry list of things I want to do but that can lead to burn out, so I plan out down time. I also make sure I don’t stop exercising on my trip. The mornings are usually the best for me before the day gets busy. I’ve got my laptop so even in a hotel room I can get in a good workout.

Here are a few sites with good information on traveling with Parkinson’s. Hope you have a good week. 💖

Parkinson’s Foundation

Davis Phinney

Michael J. Fox

dancing as exercise

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The suggestion of dancing seems to bring out a strong reaction from people. They either say they love it or they something like “I’m not a dancer”. It’s a declarative statement which seems to mean they have never been a dancer, not a dancer now, and could not possibly be a dancer in the future.

So when I saw this article about how dancing can help PD symptoms, I thought what terrific news that is. The second thing I thought was that a whole bunch of people are going to think “I’m not a dancer”. Some of that feeling might be because they don’t feel like their good at it or have any rhythm. Some of it might be cultural. Some cultures don’t have dancing as a normal part of their lives so it may be uncomfortable or feel silly, while others, dancing is done by everyone from young to old, at celebrations and holidays.

When my son Bronson moved to Brazil, he described how wonderful it was to see everyone let loose during Carnival, without a sense of embarrassment and out of just pure enjoyment. I remember when I was in Mendoza, Argentina during a new year celebration at a restaurant. An elderly man just got up and started dancing and before you know it, his whole family was up and dancing. It was a delight to see.

Dancing has been around since ancient times and is done for many reasons including celebration, communication, and was a form of passing down oral history. There is something about it that just makes you feel good. It also helps with proprioception which is sort of your body-brain connection or your sense of self-movement and body position. And of course it’s fun.

The study says it doesn’t take much, a little over an hour a week. So you can slowly incorporate that into your schedule if you’re new to it. There are also many different options to start. Dance for PD looks like they have many locations and online classes and YMCA’s usually have various dance classes. I started taking an online Zumba Gold class once a week, which is not as intense as their regular class, and it’s a blast. The great thing about online classes is that you can keep your camera off, if you’re shy or don’t feel like your dancing is ready for the world yet.

Or how about ballroom dancing? How about just put on half an hour of music in your living room and get your groove on. The electric slide, the two step, if you want to go down a fun rabbit hole, google dance tutorials.

So I hope you give dancing a try. Our break dancing days may be behind us, but we can still enjoy ourselves and do something positive for our PD. 💖

is it hot in here or is it just me

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⭐ The summer heat is in full bloom in many areas, including mine. Although I don’t like temperature, I love the long days and try to garden early in the morning or late afternoon when it’s a little cooler. In the morning I do a garden walk around and see the little changes. Yesterday there were little strawberry guavas. I leave a bowl on my counter and nibble on them throughout the day. Green onions, basil and the last of the little spicy radishes, they’re delicious pickled. The gardenia flower is a favorite. Even though my sense has diminished, I can still smell these beautiful flowers.

⭐ Have you been keeping up on the controversy about the FDA granting authorization to Biogen for their Alzheimer’s drug Aducamunab? Here are two very interesting reads from Science of Parkinson’s and Tomorrow Edition.

⭐ Easy meals are perfect during the summer and this Salmon Salad from Dinner-A Love Story has been a favorite this year.

⭐ During the pandemic, like everyone else, I exercised mostly at home. I tried different online classes including kickboxing, Zumba, HIIT, and yoga. My usual schedule was pretty typical working out pretty hard several days a week and have days off in between so that your body has time to recover. That was fine during my life pre-PD, but in the last few years that wasn’t working so well for me. I noticed that I’d work out hard and for the next couple of days I was overly tired and it just didn’t feel good. Which lead me to start re thinking why and how I should exercise, and to find a way that it would be enjoyable and rejuvenating, not energy zapping. My goal for exercising is to keep my body healthy, keep up my strength, endurance, and flexibility, to help me live a long and high quality life with PD. It’s also to help reduce stress and improve sleep and something I want to do with consistency and look forward to.

So I started changing my routine to a more moderate pace and time frame and increased the number of days to six days a week. Monday through Friday I do about 30 minutes of moderate exercise, on Saturday I may do the same or something that’s longer or more intense, and then rest on Sunday. After doing this now for about six months, I am so happy with this regime. I look forward to exercising every day because I know it’s not going to overtax me and instead it actually makes me feel good afterwards instead of tired. I also don’t have to think is it an exercise day or not, so the consistency keeps building on itself. We are all PD snowflakes so this is just what works for me. But if you are struggling with your exercise schedule or having a difficult time starting, I encourage you to try different things until you find the right one for you.

⭐ PD Symptom of the Week - This month’s favorite (not) symptom is I have weakness in my right arm and leg. My symptoms like many people are more pronounced on one side of my body, and it’s a chicken and egg scenario that I don’t which is causing which. I have problems with my right knee, shoulder, and gait. So of course I favor my left arm since it’s stronger, which makes my right arm weaker and round and round we go. I’ve been consciously trying to force myself to use my right arm more on everyday tasks like yesterday when I was vacuuming. The fun never stops.

⭐ Lastly, my sister gave me some nail polish strips. If you have a hard time painting your nails because of your tremor, these might help. Their pretty simple to put on, there is no drying time, and they last a long time. I find that the light colors are more forgiving and don’t have to cut perfectly.

If you’re in the US, Happy 4th of July weekend! ❤️

Weekend PD Notes

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Hello lovely friends, what are you up to this weekend? Marc and I are enjoying having his parents visiting this week. It’s also my mom’s birthday so we’re having a birthday lunch on Sunday.

🌟 Last week there was a post on the World Parkinson Congress blog by Mariam Bram. The title of her post is Shame and Stigma of Living with Parkinson’s. I love how she describes what she calls “radical acceptance: the act of living authentically with my vulnerabilities embraced, including Parkinson’s and all of it’s symptoms and limitations”. Read the post here.

🌟 The WPC also held its virtual congress. In addition to the in person event they hold every three years, they will also hold yearly conferences virtually. It has 68 events with lots of topics from science to wellness. It’s available online until August 19th and you can watch sessions anytime. I particularly enjoyed the Living well with Parkinson’s sessions.

🌟 The Parkinson’s Foundation, in collaboration with the American College of Sports Medicine, has created new exercise guidelines for people with Parkinson’s. At the bottom of the article is a handy poster that you can click on and save as a PDF. If you’re new to exercise, or have been falling behind because of the lock down, don’t be daunted. Take it in small steps and do a little exercise every day and build up. As the saying goes “What you do every day matters more than what you do once in a while”.

🌟 @yopdclub on Instagram has some great inspirational quotes from all sorts of interesting people.

🌟 Lastly, a site called Reasons to be Cheerful. Just what we all need…………. Have a wonderful weekend. 💖

(Image is the Strawberry Cake from Smitten Kitchen that is a summertime favorite of ours)





Yes I want to exercise today!

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April is Parkinson’s awareness month and with it comes much new connection and shared information. Last week was Hawaii Parkinson Associations annual symposium which was held virtually this year. The keynote speaker was Jimmy Choi. As you may already know, Jimmy is a world class athlete and has participated on American Ninja Warriors for several years and is also a person with Parkinson’s. He is a passionate advocate for PD and the power of exercise in the role of helping manage our illness and increase the quality of our overall health.

I’ve seen Jimmy on social media and American Ninja Warriors and I’ve also seen clips of him talking here or there, but this was the first time I’ve heard an entire speech of his and it was fantastic. There was one part where he used a backpack and it’s contents as an analogy to symptoms of PD, which was brilliant.

If you’d to watch, click here. I promise you, you’ll be motivated to get up and exercise whether you have PD or not.

how do i feel in my off time

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Off time in Parkinson’s is when your medications are not working optimally and you experience more symptoms. Although not everyone with PD experiences it, most of us overtime will.

I read a recent post in Parkinson’s News Today by Dr. C, and in it he describes his off time. What I found so interesting is that he breaks it down into four phases, with each phase described in specific detail. He is really present in what he is feeling and has found strategies to help him work through it.

Up until I read his article, I handled my off time completely the opposite. I tried to ignore it or push through it, thinking that focusing on it would just place more importance on it than I wanted. I used “feeling wonky” as my catch all term for most of my motor and non motor symptom off time. But after I read the column I can see the value of digging deeper into it. I practice mindfulness as part of my morning routine where I either meditate or sit and do nothing but just think (which is sort of a meditation but different). It’s basically trying to stay present, sit with my feelings, with no distractions or judgements.

So I decided to try Dr. C’s approach and see if I could stop and focus during my off time and describe it in writing. I tried for several days and I didn’t get very far. I basically wrote, “stronger internal and external tremor, brain fogginess, inability to concentrate, and body weakness”. It was a lot harder than I thought trying to parse out each feeling. It’s such a jumble of things happening at once. But just writing out that short sentence was helpful to me in understanding it a bit better, and by understanding it better, I can start trying things that if not alleviate them, at least deal with it better.

I think of it similar to how people have dealt with pain management or panic attacks. To not try to run from it, but to sit with it. It’s definitely an “aha moment”.

Have you ever seen or been the parent who tells their little child who is crying, gasping for breath and can’t string a sentence together, “use your words”. Well I’m going to try and use my words and continue practicing awareness during my off times, and describe them writing. Is this something that you’ve tried and had any success with?

akathisia in parkinson's

I’ve always been a busybody. Not the dictionary definition as a meddling or prying person, but literally a busy body. I’m always doing lots of things, starting new projects, and physically moving around. So a couple of years ago when I started getting this odd feeling of not being able to get comfortable sitting still and feeling the need to move, I was a bit confused.

My previous need to move was based on more of my personality and liking to do many things. This feeling was different, it was a physical feeling of restlessness and the need to move around. There are so many little motor and non motor symptoms in Parkinson’s, it can sometimes be difficult to discern what each of them are, particularly when you have several of them. I had also never read or heard anyone else talk about this symptom other than as described as restless leg syndrome. This didn’t feel like it was only my legs, but my entire body, starting from my central core.

It seems to happen more during midday through the early afternoon and things like working on the computer or reading a book are challenging. Well I finally found a name for it, Akathisia. From what I’ve read, it seems to be different from restless leg syndrome as it’s not associated with sleep and also differs from the need to move for relief of discomfort imposed by rigidity or lack of movement. It can be a symptom, in and of itself. According to the National Library of Medicine, it’s a little-studied symptom of Parkinson’s, but interviews with some patients found that 68% of PwP experience it periodically.

Although highly annoying, it’s not so problematic for me at this point that I’m seeking medication, but it’s very helpful to have some clarity on what a symptom is, so I can better communicate it to my support system and health care professionals. I am also trying to plan my day around the times it seems to be most pronounced. Do you ever feel Akathisia?

shall we get some exercise

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I am always on the search for ways to motivate myself to exercise and ways to keep it interesting. Practice makes progress.

The benefits of exercise are incredible. It strengthens our muscles and bones, keeps us flexible, improves our endurance & energy, improves balance and gait, helps mood, anxiety & depression, helps control weight, reduces your risk for heart disease and certain cancers, improves sleep, digestion, constipation, incontinence, may help slow the progression of PD, and increases our chances of living longer.

With all these benefits you’d think everyone would be exercising, but much of whether we exercise regularly or not, is not based on will power as many of us think. Much of it is based on habits and friction. We don’t decide whether we want to brush our teeth or not each day, we just do it because it’s a habit. The friction is whether we set it up to make it easier or harder. Brushing your teeth is made easier because we keep the toothbrush and toothpaste conveniently in the bathroom near the sink with water. But if we kept them in the trunk of our car and we had to go out and get them, use them, and then return them to the car, we would likely brush less.

So lets start with reducing the friction or obstacles that make it more difficult. Make it easily accessible. If you have to set up a bunch of equipment or drive far, you’ll likely do it much less. The simplest is exercising at home. Whether it’s online classes, walking in your neighborhood, or having equipment at home. Next would be things available near you. Going to classes or a gym near you, a park, or pool.

Next is to figure out what will motivate you. If you’re with people a lot of time, you may look forward to some time alone. If you need extra motivation, you may want a workout buddy or have a set class, so you are accountable to someone else to show up. If you like social media, post your exercise goals and journey there. Your social media friends will be happy to cheer you on. Make less friction by making it easier, and add friction by making it harder to say no.

Then start creating the habit. The biggest reason I see people quit exercising is because they try to do too much, too quickly. When I first started meditating, I started with three minutes a day. That may sound too easy but I knew creating the habit was going to be the hardest part. I did that daily for several weeks before I added on time. Do the same with exercise. Plan your week ahead of time and start slow and don’t increase the time, until you show up without hesitation. Then make adjustments. Remember, you’re creating a lifelong habit.

Pair it with something else. Do you enjoy listening to audio books or have a favorite podcast? Tell yourself you can only listen to it while you’re walking. Same for your favorite TV show and your treadmill. Another great pairing is a walk and talk. Set up a phone call to friend or family member while you walk.

Write it down. Tracking your progress can help keep you motivated. I love to track my progress on everything. It’s a great reminder to see little increments of improvement that sometimes you easily forget or don’t see because they are small.

You can also include more movement throughout your day. Dan Buettner is the author of the book The Blue Zones. In it he discovered seven communities around the world that had the largest amount of centenarians and observed their lifestyle and habits to see what similarities they might have. One of things were daily exercise. Not formal exercise, but movement throughout their day. Once you start taking the stairs instead of the escalator, park in farthest away section of the grocery store, you start seeing all the little possibilities that can add movement into your day. I started cutting my own grass and pruning the trees in my garden and I love all the exercise I get from it.

Have alternatives. My energy level is very different not only day to day but hour to hour. I have a list of things that I can do to exercise, so regardless of my energy, I can do something. Some days I can only manage light stretches and that’s fine. I always feel better doing something.

Lastly, don’t compare yourself to others. Everyone with PD is a snowflake. We are all at different stages in our lives and the goal is to find what works for us, what we enjoy, what we can do today, and not what anyone else is doing. Push yourself to do something small every day, but cut yourself some slack on trying to keep up with others. Do what you enjoy, and that may mean trying several different things before you find what that is. As the saying goes, “how do you eat an elephant, one bite at a time”.

holidays with pd

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Each year I go from refusing to think about the holidays because it’s too early, then pouf I’m scrambling because it’s a week away from Christmas. Not that I have any grand plans this year but I do want to do some seasonal things. Having PD may prohibit us from doing some things but there is still lots that we can do.

We put up our tree and a wreath, and put a few simple decorations like bowls filled with fairy lights and ornaments. Fairy lights are so charming, I want to leave them out all year long. I have a large rosemary plant that needs trimming so I’m making a few small herb wreaths. I wanted to try a hand at making a tropical garland but ran out of brain space and energy on decorating. Speaking of brain space and energy, yesterday I took a half hour nap and then slept for nine hours last night. Go figure. With PD it’s either I have a hard time sleeping or sleep like Rip Van Winkle.

For holiday baking I made my first fruitcake. I know I hear groans in the background but I love fruitcake in all of its variations including Panettone & Stollen. The one I made is a British style fruitcake and the two lovely loaves are luxuriating right now in brandy soaked cheesecloth. I have a fruitcake story that perpetuates the tale that all the fruitcakes are just the same ones being passed from person to person because no one wants to eat them.

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One year we were in Mendoza Argentina at Christmas. The hotel we were staying at just opened, so we were one of only a few guests in the entire hotel. In our room was a welcome basket with assorted munchies and a fruitcake. In the afternoon, the maids came in and cleared out the basket and later that evening we went down to one of the hotel restaurants and they had a side table with holiday decorations with a fruitcake on it. The next morning we went to breakfast and there on the buffet, of course what did we see but fruitcake. It became a running joke of seeing our fruitcake everywhere we went in the hotel. We should have given it a name.

I’ve got a couple of holiday movies lined up to watch. I’ve never seen It’s a Wonderful Life, and I love Jimmy Stewart so I’m looking forward to it. The other is a modern movie Love Actually. I know the whole premise of people all getting together for the holidays and fall in love has been badly done a million times, I like this one. What can I say, I love sappy movies during the holidays.

I’m sufficiently in the holiday spirit. We don’t put an emphasis on gifts at all during Christmas. It’s about the generosity of spirit, festive food, and reflecting on the year.

Hope you’re enjoying the holidays.

(image from my name is yeh)


No Time Like the Future

No Time Like the Future: An Optimist Considers Mortality by Michael J. Fox

I just finished reading MJF’s newest book. This is his third best seller, his others being Lucky Man and Always Looking Up. Each one is a memoir and shares the next chapter in his life with Parkinson’s. One of the things I liked most about his book is that it details his perspective and experiences now that he has had PD for almost thirty years.

The last couple of years have been challenging for him with spinal surgery and a broken arm, and he details how the experience has changed his outlook and made him think about his mortality. A broken arm may not seem so difficult in the scheme of injuries, but for someone with a chronic illness it can present many more challenges. He is great at describing his feelings about what its like to depend on others for simple day to day tasks because physically he can’t manage them, and how it can feel demoralizing or embarrassing, but he keeps it in perspective and always adds his signature humor.

I laughed and teared up. What brought tears to my eyes the most were the moments where he reflects on how his disease has impacted his family. I think that is one of the most emotionally difficult things for people with a chronic illness, is the impact on those around them.

Being in his twenties when he was diagnosed and newly married with a small child, and then having three more children after his diagnosis, amazes me. The extra challenges of having Young Onset Parkinson’s Disease and raising a family must be tremendous. He is the first one to admit he could have never done it, without his wife Tracy Pollan, who is the lead in his incredible support system.

I really enjoyed this book and recommend it. The common thread throughout all of his books is gratitude, appreciation and being hopeful for the future. His advocacy of Parkinson’s and willingness to go public has propelled public awareness like no other. I’ll leave you with a quote from another famous person from our tribe.

“It isn’t the mountains ahead to climb that wear you out; it’s the pebble in your shoe” ~Muhammad Ali

holiday gifts for parkies

If you’re looking for a gift for someone with Parkinson’s or looking for something for yourself, here are few helpful and gorgeous gifts. And don’t forget to order early as shipping might be spotty on some things this holiday season.

Yes they are slip on shoes! Finally stylish shoes for people with Parkinson’s.

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Super stylish medical bracelets and necklaces for both men and women. Talk about style and function.

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MJF’s newest book being released today.

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Great for chopping veg and herbs and much easier than a knife.

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Modern look & made of premium aluminum and wood for at home or on the go.

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Ceramic mug with wide bottom keeps it steadier than a regular mug.

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Made of memory foam and contoured eye pockets for comfort.

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Toeless sock help retain a barefoot sensation with silicone gel strips for anti-slip and stability.

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E-readers are great if you have difficulty turning pages or keeping your book still.

fatigue and parkinson's

I’ve written about fatigue before but it’s definitely one of my most annoying and challenging symptoms right now. According to the Parkinson’s Association, about half the people with PD report fatigue as a major problem and a third say it is their most disabling symptom. Aside from wanting to take a nap in the afternoon, some days I just have a low grade tiredness all day. Fatigue is difficult to describe and measure. It can be mental and/or physical fatigue and its source can be from the disease itself, medication side effects, or lack of sleep. Here are some things that I’ve been exploring to help with my fatigue. As always, I’m not a health professional and an expert at nothing :), so please work with your doctor to find out what’s right for your care.

Eat Well – Eating nutritious foods in reasonable amounts gives us the fuel we need throughout the day. Eating processed foods and foods high in sugar and simple carbohydrates can give us sugar crashes that zap our energy. Michael Pollan’s haiku of “eat food, not too much, mostly plants” is amazingly simple and comprehensive.

Exercise – Don’t wait for a ton of studies to show that exercising is beneficial for people with PD. It is. Period. There have been a zillion studies that show exercise is beneficial to people overall, so how could it possibly not be helpful for PwP. Exercising helps with fatigue and so many things like improving your strength, flexibility, endurance, digestion, weight management, & mental outlook, and if we are improving those things, it’s beneficial.

Practice Good Sleeping Habits – Turn off screens an hour before you go to sleep. Take a warm shower, turn on relaxing music, get in comfy bed clothes. Create a ritual that you enjoy that lets your mind know that it’s time to get ready for bed. Read books at night that are relaxing or provide escapism. Stay off of social media, news, or things that will trigger worry or stress.

Take a Nap – I recently read that taking a 10-20 minute is optimal. Anything more than that can leave you feeling groggy and may not give anymore added benefits than a shorter nap. Also try to limit taking multiple naps during the day or taking a nap late in the afternoon, as that can contribute to sleep disturbances during the night. Now this is a tricky one for me. When I’m tired, I try and figure out whether I’m actually tired and need a nap or if I’m fatigued, in which case maybe I just need to slow down. Sometimes I’ll actually try and do something physical, which sort of snaps me out of the fatigue by placing my focus elsewhere. I know this sounds counter intuitive but at the right time, it can re-energize me.

Find Your Daily Rhythm – Are you a morning or afternoon person? See what your natural tendencies are and do the difficult or high energy items like exercising or complicated thinking in that window. For me I’m much more productive before noon. So I exercise, garden, do high thinking work in the mornings. In the early afternoons I do administrative things, run errands, or do creative things.

Medication – As we know, many medications for PD can have side effects that make us sleepy or groggy, or sort of out of it. If this is the case, talk to your doctor about it. Our symptoms change over time and changing the dosage, timing, or type of medications to best benefit our current symptoms is always a balancing act. Keep a journal of how you feel during the day along with when you take your medication and see if there are any patterns that seem to correlate and bring them with you to your next doctors appointment.

Do you have any good tips on helping with fatigue? XO

New Parkinson's Book

Good Morning, just sitting down with a cup of mint tea and thought I’d tell you about a new book I just finished called Ending Parkinson’s Disease: A Prescription for Action by Ray Dorsey MD, Todd Sherer PhD, Michael Okun MD, & Bastiaan Bloem PhD, MD. The authors are four leading PD experts so you may have read some of their other work. The book is very straight forward and lays out a basic history of PD, Prevention, Advocacy, Care, & Treatment.

What really stood out to me though is the idea that Parkinson’s could be a man made pandemic and that harmful chemicals in our food and our environment is likely some of the cause. I have read bits and pieces of this idea before but never with this much clarity as to specific concerns and how we can address them moving forward. With the rise of PD cases in the last twenty-five years, the book sets a sense of urgency without being over alarming which can make it easily dismissed. It also gives information on how to advocate with legislators from banning certain chemicals to making treatment drugs more available to more people. It’s definitely worth reading.

How are you holding up? Just when we thought there was some light at the end of the tunnel, this resurgence of Covid-19 has pushed things back again in many areas. How do we get a do over for 2020? I’m trying to continue taking a few minutes of gratitude throughout my day and take pleasure in things both big and small. Last night we had some neighbors over for a pau hana. A pau hana in Hawaii is a casual get together after work to relax and socialize. It’s a beverage and pupu, before you head home for dinner. But the best pau hana’s are the ones where you end up staying and talking, and the pupu’s replace dinner, and that’s just what happened. I think we were all starved for connection and ended up having such a fun time.

Off to start my day. Summer is in full gear and it is hot as you know what here. Have a good one! xo

how do i treat my parkinson's

I’ve been asked many times, what do I do to treat my Parkinson’s, so I thought I would let you know my current routine. Not that what I do is particularly interesting, but PD symptoms differ from person to person and I find myself curious about what others do too.  

I was diagnosed with PD in 2011 when I was 46 years old, so it’s been 9 years. I take 5 doses of carbidopa/levodopa per day, 1- 25/100mg pill about every three hours. Along with the pill I drink a glass of water mixed with either 500 milligrams of vitamin C powder (I use half an envelope of Emergen-C) or 2 tablespoons of lemon juice.

I take several supplements. Fish oil, citicoline, vitamin D, vitamin B12, probiotics, acetyl l-cysteine, and alpha lipoic acid. I also put a tablespoonful of psyllium husk in my morning smoothie.

I try to exercise 5-6 days a week. Doing a variety of exercises keeps things interesting and helps my body and mind work in different ways. It also allows me on days when I don’t have a lot of energy, to still get some movement by choosing something less strenuous. I enjoy yoga, walking, weightlifting, HIIT (high intensity interval training), and hiking. Sometimes I do them at a gym, outside, or at home. I also really enjoy gardening, so I take care of my yard and garden including the grass cutting and tree trimming on a very steep yard with many stairs.

Overall, I eat pretty well although my sweet tooth is really going bananas lately. I don’t diet per se, but I do try and stick to Michael Pollan’s quote of “eat food, not too much, mostly plants”. I limit processed and junk food and try to keep portions reasonable. And even though I do have an increased sweet tooth, I try and make my desserts which does slow me down versus buying ready made things.

To help with sleeping well, I create quiet reading time and only read fiction before bed, avoid computers & social media. Now this is going to sound really silly but when I wake up in the morning, while I’m still lying in bed, I make a big smile and think to myself, I’m grateful for this day and it really starts off my day in a positive way.

Taking care of my mental health is important. I’m a pretty positive person by nature but having PD is difficult. I meditate and do quiet thinking, make an effort to spend time with family and friends, and volunteer in my community, all of which help me maintain a good outlook and feel centered. I’ve also seen a therapist from time to time. She has lots of experience with patients who have illness in their lives and has been a very helpful when I’m having a challenging time.

That’s it. I’ll tweak my routine as needed and constantly try to learn and observe, and honestly having PD has made me a more compassionate, empathetic, and thoughtful person. I hope your current routine is working well for you and if you have any good tips, I’d love to hear them. xo

reinventing yourself

I read a post on My French Country Home about Sharon Santoni and how she reinvented herself after her children were grown. It got me thinking about all the other times in life where we reinvent ourselves or come to a new phase in life. It can be after having a new family, new career, empty nesting, retiring, the death of a loved one, or having a chronic illness. Each can be challenging because it means change and change can be difficult even if it’s good change.

I remember a friend of mine saying that after her children were grown, she and her husband had to start a new relationship because it had always been the kids in the middle, and now they had to find their way to being a couple again. It was difficult in the beginning but they created an incredible new relationship that is rewarding and better than it ever was.

The same can happen when you have a chronic illness. I remember my first thoughts after being diagnosed with PD, that my life as I knew it was over. That all the big goals that I had planned had to come to a screeching halt, and I was no longer me. It was scary to think about the future. It took some time, but after the initial shock wore away, I started thinking about the changes in a more pragmatic way. I took stock and realized all the positive things I have in my life, things that I could do, and ways that I could help others. As the saying goes “if you can’t get out of it, get into it” and the more I got into it, the more I realized there is so much to explore than I could never have known about before.

The new you can also come at a time that you choose. Maybe you’re at a time in your life when you want to reinvent yourself. To make changes for the better. To explore the creative side in you, to enjoy managing your health better, create a better relationship, whatever you want to do with the next phase of your life.

Have you had to reinvent yourself?

Well off to my garden. Quarantine is still on but slowly lifting. Some stores and beaches are opening with limitations, hospitals are starting elective procedures and I can see a bit more traffic on the roads with people out and about. I hope things are getting better where you are. xo

“Celebrate endings—for they precede new beginnings.” Jonathan Lockwood Huie

new makeup brand developed by a parkie

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Wonderful news to hear about a new makeup brand developed by a woman with Parkinson’s. Makeup artist Terri Bryant has developed Guide Beauty which launched last month, with products designed to help people with disabilities apply makeup with more ease.

It looks like there are currently four products, an eyebrow gel, eyeliner, eyeliner applicator, and mascara. I’m looking forward to trying them, especially the eyeliner. The applicator is a unique design and rests against your cheek for more stabilization. Take a look at the tutorial.

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If you’ve tried any of the products, let me know what you think of them or if there are any other brands out there we should try.

staying connected to your partner

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Having a chronic health issue can be like a third partner in your relationship. No matter what you’re doing, it wants to stick its nose in and say “hey there, don’t forget about me”. It can be beyond annoying, so it’s important that I do things to help keep that connection as a couple. Another change is that I’m no longer working and Marc is very busy with his job, so our schedules and energy levels are different.

For you, it may be that you’re both very busy with your own jobs, have conflicting schedules, or have kids that keep you busy. Whatever the reason, trying to stay connected at different stages of our lives is important and can take extra thought and effort. Here are a few things that I try to incorporate into our lives.

15-minute decompress time – When one or both of you get home at the end of the day, give each other space to change gears. It’s never fun to walk in the door and get bombarded by your partner with questions or requests. Change into something more comfortable or do whatever ritual that helps you shift from work to home time.

One thing to talk about at dinner – Each person brings one thought to discuss at dinner. It doesn’t have to be deep or mind blowing, but just one tidbit to start a little conversation. Whether it’s some news you heard in the world, something about a person you know, or something that happened that day. Even your silliest thought can be a fun conversation starter. It’s fun also during the day when something happens, you start thinking “I can’t wait to talk about it at dinner”.

No Worries Date Night or Day – My ex in-laws used to have a “why worry club”. This was a small group of couples who got together for dinner regularly and the only rule was no talking about troubles, kids, jobs, anything that was stressful. You of course could put together a group, but if that isn’t an option, make it just for yourselves. What you do is completely up to you but no discussing the parent-teacher conference coming up, your sore knee, or the report that’s due next week.

Go for an after-dinner walk – Taking a 15-minute stroll together after dinner is a great way wind down your day and reconnect. It’s not a heavy exercising walk but a stroll. Italians call it passeggiata, meaning a short walk taken purely for pleasure.

Tell your partner - I love you, I appreciate you, or thank you for …. After being together for a while you may think that your partner already knows these things, but saying them regularly makes both partners feel connected. It doesn’t need to be a conversation, even just a quick text when you’re both having a busy day can bring a moment of joy.

What are things that you do stay connected to your partner?

lower protein meals

For some people with Parkinson's, taking carbidopa/levodopa too close to eating a meal with lots of protein, can interfere with the absorption. It wasn't the case for me before, however recently that's changed. In fact I've been trying intermittent fasting and I find that my medication absorbs the best in the morning when I haven't eaten anything. I'm going to continue with the fasting and I'll do a post with my experience in the near future.

So I've put together a few tips and recipes for easy and delicious meals and snacks that are lower in protein when I need them. Make sure you talk to your health care professional to find out what is a good eating program for you and your needs.

Pasta w/vegetable based sauce. It can be the simplest sauce like Marcella Hazan's famous Tomato Sauce (your mind will be blown by how delicious and easy this is), Pasta Primavera, Brown Butter Mushroom Pasta, and this is the easiest One Pot Summer Pasta.

Veggie Sandwiches - Here are a few gorgeous and filling veggie sandwiches. Pesto Veg Sandwich, Green Goddess Veggie Sandwich.

Fried Rice - This is a weekly favorite because you can clean out your fridge of all the leftover bits and bobs of vegetables. Use this as a base, omit the egg and load up with your choice of veg and chopped herbs.

Soups - These are easy and satisfying. Seriously Delicious Vegetable Soup or Butternut Squash Soup.

Vegetable curry - I omit the shrimp and replace with whatever vegetables I have.

 Here are a few easy snacks:

Fresh fruit, raw vegetable sticks with guacamole, baked sweet potatoes sticks with spicy mayonnaise, smoothie with fruit, greens, honey, ice cubes, & plant milk.  

I haven't tried them but you can make the meal even lower protein with low protein pastas, breads, and snacks called Flavis.

Do you have any favorite low protein foods? Eat Well. xo Kai