forget about parkinson's

When I was first diagnosed with PD, I thought about it a lot. I didn’t know anything about it, so my thoughts were all over the place about what it was, what it meant to my life moving forward, and about how it would impact my family. Nothing was ever the same.

Then a certain time passed where I was able to let it sink in, where I became more educated about it and was better at taking it one day at a time. In the early days when my symptoms were mild, I could pop a C/L tablet it and I’d feel normal. I could go back to my life and almost forget about my PD.

Now time has passed, it’s been 12 years since my diagnosis and several years before that being symptomatic, and my symptoms have progressed so that medication doesn’t get me back to normal, my goal is to minimize the symptoms so they are tolerable. I also try hard to exercise and keep moving, watch what I eat, read about the latest research, volunteer for our local Parkinson’s Association, and so on, all in the service of keeping on top of my PD.

That’s a lot of time thinking about PD, so I have to also make sure I find time to try and not think about PD. For me that’s reading, listening to a podcast or audio book while gardening, or watching an old movie. I also find doing something that’s hard, that makes me solely focused on the task at hand is very rewarding. What do you enjoy doing that helps you forget about Parkinson’s?

your five senses and pd

I recently read Gretchen Rubin’s new book called Life in Five Senses and in it she talks about how we can learn to better use our senses to navigate and engage in our world. She offers a test on her site to see which is your most neglected sense and ideas to enhance that sense.

I took the test and my most neglected sense was touch. That got me thinking about how having Parkinson’s has impacted all my senses. That touch was my most neglected sense doesn’t surprise me. I notice with a tremor and a weakened grip it’s more difficult to lean into the sense of touch. Gently touching something is difficult.

Then there is smell. Losing or lessening of smell which is a common symptom, impacts two senses, your smell and your taste.

Vision is next. Did you know that PD can impact your vision? Symptoms can include dry eye, double vision, the dulling of seeing color, or even dyskenesia.

Boy, that’s four out of five senses that can potentially be affected. As for hearing, the things I was able to find were suggestive about potential hearing loss but not much more at this point.

It showed me how important it is for me to look for ways to enhance my senses, to practice paying attention to them. Sometimes it seems like I’m walking around in a little bit of a hazy cloud and that might be because the dulling of my senses. Do you sometimes feel that way also?

making friends with pd

One of things that I’m sure you’ve been reading everywhere, is how important having social connections are to our well being and longevity. When we are children in school, most of us go to a different class each year and are immersed in opportunities to meet and spend time with new kids. We study together, play together, and eat together, and as a result we have time to cultivate relationships. We may also have extra curricular activities like sports or hobbies where there are additional ways to make friends. Then we become adults and go off to work and that replaces school as a way to meet people. In our early days we have lots of energy and go out with friends after work and in our free time.

But as we get older we tend to try new things less often, keep to the same routes, schedules, and see the same people. In the age of work at home, zoom meetings, food delivery services, and social media, there is less time for talking to people period, let alone new people. Even big life events like retiring, getting a divorce, or moving to a new place can make you lose touch. You tack on having Parkinson’s or many other health conditions and it can become a real challenge. Common PD symptoms like anxiety, depression, fatigue, embarrassment of symptoms, and apathy can all become barriers. Physical things like difficulty getting around both in driving or mobility and a soft voice/difficulty being heard can be a challenge in communicating.

But keeping social connections is like a muscle and like any muscle the more we use it, the stronger it becomes. Here are few ways that might be helpful. If you know of other ways that helps you, let us know in the comments.

~ It all counts - All the social connections you have throughout your day counts. Every person doesn’t have to be you BFF and small stakes relationships matter. Chatting with your neighbor, mail person or grocery store clerk all count. Online counts. Smaller more frequent communications can be more effective than trying for every encounter to be meaningful.

~ Start small - text, email, or make a short phone call as often as you can. Keep if brief.

~ Start with people you already know - Reach out to people that you used to be in more contact with. Just say hey we haven’t talked in a while and I’d like to reconnect.

~ Attach your phone call to something else - I love this one, call someone while your walking, driving your car (of course be safe), while cleaning the house. I love the connection of doing them together.

~ Join an activity either in person or online - Whatever you enjoy, there is likely a group who enjoys it also. Book club, exercise class, cards or games, movie clubs, pottery, garden clubs.

~ Volunteer - You get to help a good cause and you get back so much in return and you can choose organizations that are meaningful to you. Animal care, friends of the library, food bank, meals on wheels, your local Parkinson’s Association. Take a look at Volunteer Match or the United Way for lots of options.

~ Set up recurring events - It eliminates decision fatigue and automatically gets us going. I heard of a great one recently where they set up a weekly coffee meet up with a group. Everyone is on a group text. No obligation to be there every week. If someone is going, they text the group, and the rest of the group only replies if they will also be there. Everyone else doesn’t reply. It’s brilliant, no texting going back and forth to see who is going.

~ Be spontaneous - Explain to friends and family that your energy level can change on a dime with PD. So sometimes if you have the energy, you want to take advantage of it and see if they want to do something on the spur of the moment. Even though the timing doesn’t always work, when it does, it’s such unexpected fun.

~ Join a support group - Having others to talk to who also have PD, or if you’re a care partner, talking with someone who understands and shares your situation can be invaluable. I have made some deep and lasting friendships. And all support groups are not alike. If you went to one and it wasn’t the right fit, try another one.

~ Sign up for automatic emails on events around town. It’s a great way to spark ideas for things to do.

~ Get a dog - Getting a dog will get you out of the house and think of all the new doggy parents you can meet at chat up at the dog park.

Lastly don’t be discouraged if you try to start a connection and it doesn’t work. Everyone is in a different place in life and it just may not be the right time. I think many of us are hesitant to ask someone out to coffee or contact them because they don’t want to get rejected but the reality is, is that most people would love another connection also. If they say no, don’t take it personally. On with the next!

Here are a few books to read on the subject. Platonic: How the Science of Attachment Can Help You Make-and Keep-Friends by Marisa G. Franco, Quiet: The Power of Introverts in a World That Can’t Stop Talking by Susan Cain, The Life Council: 10 Friends Every Woman Needs by Laura Tremaine

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

have a lovely weekend

Fall is humming along. Now that Halloween is done I’m sure it will be wall to wall advertising for holiday shopping. I’m not immune, but I try to not impulse buy and find that putting a lag time on purchases really reduces the urge. Not that I buy a ton of stuff, but last year I figured out that I ended up buying just as much stuff for me or my house as I do for others. Oh well, ho ho ho.

Last weekend we spent a lovely couple of days at a beach cottage with family. Sitting by the beach with a cup of coffee, watching the sunrise in the photo was magical. I got the best exercise from a $4 rubber ball that I bought from Walmart. It was very soft so it was easy to catch and throw, and hit like a volleyball. It was fun and felt like playing in the park as a kid. It’s definitely a keeper that I will try to incorporate into my exercise tool kit.

My PD subject this week is pain. I signed up for a pain clinic sponsored by APDA that was put on by Beyond Rehab and it’s founder, Apurva Zawar. Apurva did a great job in helping me with a few things. Pain with PD can be caused by many things and present itself differently for each of us. It can be acute, chronic, dull aches, sharp pain, numbing, tingling, caused by dystonia, postural issues, on and on. But prior to this I would normally describe my pain generically like, my leg hurts or when asked to put a number to my pain from 1-10, I always thought, compared to what? So parsing out and writing down the specific type of pain as I have it, is allowing me to better acknowledge and in the future communicate it better to my health care advisors. Also things like does it happen at a certain time of day, or when I’m having an off period, and how long it lasts are things to look at. It also helps me to put the pain in better perspective in my own mind.

Then knowing better what it is, I can try strategies to help deal, lesson, and get through the pain better. For example, for some pain, distraction is the best method. I do something that will take my mind of it until it passes. Sometimes doing something physical can help alleviate it. Some of my back pain is caused from postural issues, so going through my posture checklist along with doing exercises that are keeping my back and abdominal muscles help. Meditation is another tool that has been helpful to me, and this may sound strange, by leaning into the pain and just sitting with it. These I’m sure are just a few examples and I have much more to learn about the pain process, but I’m interested because pain will likely continue to play an prominent role in my symptoms and what I see too often is someone starting to avoid doing beneficial things like exercise and socializing, to help them avoid pain.

Lastly, I have two streaming shows to recommend and a book. Human Playground is a 6-episode documentary about the role of games and playing throughout human history. It’s fascinating to see games from around the world, many of them I’ve never heard of and what we learn from them. The other is The Patient which is a suspense limited series starring Steve Carell. He plays a therapist who gets kidnapped by a serial killer, who wants him to provide therapy to him and help him stop killing. It’s filmed mostly in one setting so it’s almost like a play and it’s really a show about their interaction and relationship. The book is Agatha Christie: An Elusive Woman by Lucy Worsley. If you’re an Agatha Christie fan, you’ll enjoy this book but part of the enjoyment was listening to it on audio narrated by the fantastic British historian Lucy Worsley. You may know her from all the BBC programs she hosted about British royal history.

I hope all is well with you. Drop a line and say hello and let me know what you’re up to, it always brings me a smile.

ready for a new week

~An Aviation cocktail and a game of backgammon was the perfect kickoff to Saturday afternoon. This week has been scorching hot so I’ve been gardening early and late in the day and I notice that I feel better when I’m able to spend even just a few minutes outside in the sun first and last thing. Andrew Huberman talks about how being outside without sunglasses first thing in the morning for as little as 10 minutes can help set your circadian rhythm for the day, which can help you sleep better at night. The whole concept about the changing of the seasons and how our natural daily patterns should change with them interests me a lot and I’d like to read more about it.

Artificial light has only been around for a very short amount of time in human history and it’s changed the way we live and sleep, and now that we’re finding out how important our sleep cycles are to our health, I want to know more. Not to mention the additional sleeping issues that PD can bring, I wonder how that can potentially affect the progression of our PD.

~ I’ve got a new athletic shoe to recommend from Xero Shoes. My knee problem has been exacerbated by dyskenisia and stiffness, so I’ve been working on correcting my walking, to lessen the impact on my knees. These type of shoes are based on the foundation of barefoot walking/running. In a nutshell walking or running in shoes that have a thick cushion where the heel cushion is higher than the front of the shoe (which is most athletic shoes) force you to strike your heel first, which in turn puts more impact on your knees. Barefoot shoes have a zero drop meaning are flat and have a thin bottom so your foot hits the ground more in the mid/front area. The thin bottom also allows you to use your foot muscles in a more natural way and the front of the shoe is wider to let your feet sit naturally. Lastly they are very light. I started wearing them walking at the park and I absolutely love them.

~I’ve heard of PwP getting together for boxing or bike riding but lately I’ve been hearing of other interesting groups like a photography club, a gardening group and even a pickle ball group. What a fun way to enjoy a hobby and learn new things.

~For my friends who have gone through menopause, Q: What does a hot flash feel like?
A hot flash is a mildly uncomfortable sensation that feels like a new star is being born in your abdomen and all the heat from the explosion is radiating out of your face. Only hotter. The whole article is a crack up.

Have a wonderful week 💖

looking presentable with pd

When I was working outside the home, I used to dress very professionally. I spent time, energy, and money on clothes, getting my hair cut, pedicures, etc. But with PD and not working out of my home anymore, I’ve adjusted all of those things to my new lifestyle. Some of those things have changed to economize, some of them because I’m at home much more, and some of them are to accommodate my PD.

I like to be presentable every day whether I’m leaving the house or not. It makes me feel good and starts my day on the right path, however I’m also very low maintenance so I try to streamline things . These are things that help me dress each day easily.

In my closet and drawers, I remove all the clothes that are out of season or that I don’t wear anymore. I put them in baskets or in the back of my closet. Everything I do wear is right in front. Having fewer choices actually makes dressing easier. I only put the things that I like, I know I feel good in and that I’ll wear in the next three months.

My clothes are ready to wear when I am. Marc loves to iron his clothes each day. I hate to iron, so I iron once a week when I do my laundry. Too many times I’ve pulled something out of the closet and then put it back because I didn’t want to iron it first. So now anything I pull out is ready to go. I also re-wear things more than once so when I take them off, I immediately hang them up. I have a clothes steamer in my closet so I can freshen it up if it needs it, and I keep a small spray bottle of vodka in my closet for a spritz which can also freshen it up. I know this sounded weird to me too but I got the idea from a fantastic book called Laundry Love which has all sorts of great information about how to do your laundry better.

Next up is hair and makeup. I have found a haircut that works well for me, that’s easy to style and upkeep. Although I love seeing things like highlights and curled or flat ironed hair on other people, I know myself and that I would not be happy with the upkeep and maintenance. I do color my hair and have found a good home hair coloring kit. Same thing for my nails. I love to see all sorts of beautiful nail polish but I do a lot of household chores and gardening and the constant upkeep would drive me nuts. So I keep my nails trimmed, cuticles pushed back and a little cuticle oil rubbed in. I’m even too lazy to get a pedicure so I do my own at home and that’s where I can have fun with colorful polish.

Conversely I have a friend who loves to go to the salon for all sorts of beautiful hair and nail treatments, which is fantastic. For her, it’s easier and enjoyable for someone else to do it.

As for makeup, I do like to put some makeup on each day. My eyebrows are sparse from over plucking back in the day, so those are a must and then I have an easy and quick routine that I can do without fuss.

With PD, how I feel can change from hour to hour. I can have energy one minute and want to lay down and rest the next and when I’m feeling junky, feeling physically disheveled makes me feel worse. So having an easy plan that works for me to be presentable each day, helps me feel my best and ready for whatever the day has in store for me.

traveling with parkinson's

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

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. 💖

the championship game

This weekend was the championship tennis matches at Wimbledon. If you don’t watch tennis, Wimbledon is one of four Grand Slam tournaments which are considered the top tournaments in tennis. I watched the matches with enthusiasm as I do every year. Now, I don’t play tennis, but I love watching championship games for many sports.

The very best of their sport, after spending many years of training, effort, will, and drive, play in a high pressure, see what you’re made of game. You see the awkward first few shots as the players try to work out their beginning nerves. You see celebration in winning shots, frustration in missed hits, and you see one of the most interesting things to me, is what they do when their down or behind. Championship games are many times won in the defense. Not what you do when you up, but what you do when you’re behind.

When you’re behind, it’s easy to think that you’re losing the whole game, feel the weight of it all, focus on what you aren’t doing versus what you are, or can. You feel more pressure to ramp it up to get back the advantage. But champions know that when you’re down, instead of getting ramped up, it seems like they almost slow down. They focus only on the point they are playing, not letting everything else overwhelm them. They stay with their game, in the moment, focus on problem solving, and they never give up.

We can use the same fundamentals in living with Parkinson’s. It can be easy to get lost in the overwhelming challenges that PD brings in our lives. To feel the pile on, where the littlest defeat can feel like a mountain. But we can practice staying in the moment and focus on winning just the point in front of us, and never give up.

Have a lovely week. 💖

is it hot in here or is it just me

⭐ 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

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.

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A post shared by Welcome to the YOPD Club (@yopdclub)

🌟 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!

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

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

hanauma bay, oahu

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

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.

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.

Kizik Slip On Shoes

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

Lauren’s Hope Medical Bracelets

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

No Time Like the Future: An Optimist Considers Mortality

MJF’s newest book being released today.

Mezzaluna- Rocking Chopping Knife

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

mbarc 7 Day Weekly Pill Organizer

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

Highwave Hotjo Mug

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

MZOO Sleep Mask

Made of memory foam and contoured eye pockets for comfort.

Hylaea Yoga Socks

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

Kindle E-Reader

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