dear kai

I got this email from one of our readers and thought it would be a good post. If you have any suggestions for a topic or a question, please email me at asimpleislandlife@gmail.com and I’ll be happy to try and answer on the blog or in private.

 “Dear Kai, I’ve had PD for about six years and I’m finding it difficult to motivate myself to exercise. I’ve been a moderate on and off exerciser most of my life. I’m tired a lot and it’s easier to put it off for another day. Any suggestions?”

Motivating yourself to exercise can be extra challenging with a chronic illness. Fatigue, tremors, dystonia, balance issues, and physical weakness can add up to saying “maybe tomorrow”. And if you’re a person who didn’t exercise much before you’re diagnosis, it can be a tall order to start exercising after.  But we all know the mantra that beyond for normal wellness, we with PD must exercise as much as we can. Here are a few ways to help.

Make it fun – There is much ongoing research on which exercises are best for PWP but I say the ones that you enjoy will be the ones you do the most. There are so things to choose from and you may need to try a few before you find something you like. Is there something you did when you were younger that you enjoyed and could start up again?

Make it convenient – Do things that are close in proximity to where you live or work. Research shows that the farther away your exercise place is, the less frequently you will go.

Figure out your personality – Are you the type of person who will show up more often when you are accountable to someone? Then find an exercise buddy. Aside from the workout, you could get a cup of coffee afterwards and get a twofer of exercise and a nice chat with a friend. Do you prefer having a set day and time each week or would rather have flexibility if your schedule differs a lot?

Make it a family activity – If you have kids or grand kids, doing exercise together is a great way to bond. How about an easy hike, or hit some balls at a golf range. Or while you’re waiting for your kids at their sports practice, instead of waiting on the sidelines, walk around the field or neighborhood.

Write it down – Keep track of your exercise and you’ll see your progress and accomplishments. When you look at your monthly calendar and see how many times you actually did exercise, it can encourage you to keep going.

Change it up – I get bored doing the same exercises all the time so I do a variety of things. Kickboxing one day a week, walk with someone another day, go to the gym, do yoga at home, swim, walk on the sand. It keeps it interesting and fresh.

Cut yourself some slack – When you miss a day, that’s ok. Just get back at it the next day. Sometimes we are too hard on ourselves and are always looking at what we didn’t do, instead of what we did accomplish.

Every little bit helps – You don’t always need a hardcore workout. It seems we have designed our world to eliminate physical movement in our day to day lives. In his book The Blue Zones, Dan Buettner talks about the places in the world where their populations live longer and healthier, and that one of the common traits they have is they incorporate exercise into their daily lives. So walk to the store if you can, take the stairs instead of the elevator. Ask your yard person to come every other time and you do the lawn on the alternate weeks. There are many ways to incorporate movement into our daily lives if we look for them.

 

 

 

 

 

i gotta pee

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Urinary incontinence is a common symptom with Parkinson’s. Other things that can contribute to incontinence include pregnancy, childbirth, menopause and medications. Fun right? Stress incontinence is when you have leakage from pressure, let’s say when you cough, sneeze, or laugh hard. Urge incontinence is the feeling or sensation that you have to urinate even when your bladder is not nearly as full as it should be for a normal urinating sensation. There are a few things that can help.

Diet - Certain foods may exacerbate your symptoms including caffeine, alcohol, carbonated beverages, spicy foods, high doses of vitamin c, & chocolate.

Exercise - Pelvic floor muscles are just that, muscles, and doing regular kegel exercises can strengthen the muscles of the pelvic floor. Michelle Kenway is a Physical Therapist that has free online videos tutorials that show how to do them correctly.

There are also phone apps that are a good way to set reminders and keep track of how often you do them. Kegel Trainer PFM Exercises for iPhones and Kegel Trainer for Google Play are just a couple.

Bladder Training - Bladder training involves voiding at timed intervals with the goal of spreading the times further and further apart over the course of six to twelve weeks. You typically keep a diary to track your progress. Here is an article with more details from the University of California San Francisco.

Medication - There are a number of medications that may help. Of course talk to your health care professional about all of the above options to find the best fit for you. There is no need to be embarrassed, it’s a common problem for both men & women and the good news is there are things that can help.

walking barefoot

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marc and i are lucky enough to live about 10 minutes from ala moana beach park and on some early mornings we like to walk down the beach barefoot. it feels incredible to feel the sand between your toes and see the beautiful ocean. it’s also an important exercise for me as it helps with my balance, allows my feet to move freely, strengthen, and stretch. it also helps with my dystonia and muscle cramping. i can feel my toes gripping the ground and i also feel the bottom of my feet which i don’t when i’m wearing shoes.

i read that our feet have 26 bones, 33 joints, and 100 muscles, tendons, and ligament, and that our feet were not meant to be in stiff shoes all day. there is a movement called earthing, which talks about how direct contact with your feet to the earth connects you to the energy of the earth. whether you subscribe to it or if it’s a little too new agey for you, walking barefoot just feels good and feels natural.

in hawaii we take off our shoes when we go indoors so we are used to being barefoot. however if you wear your shoes all day, it may seem odd at first to go without them. so just start with removing your shoes when you’re at home. once you get used to it, you’ll never want to go back! your feet will be thrilled to see the light of day, feel the fresh air, and feel the sensation of everything they are touching. imagine if we had gloves covering our hands all the time, even in the summer and indoors.

if you don’t have the luxury to walk on a beach, when the weather permits you might have a park or a grassy area that you could walk on. or take off your shoes for a short time while your gardening, or just walk to the mailbox barefoot. i’d love to know if find walking barefoot beneficial.

~kai

little mood boosters

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when you have parkinson’s, your mood can go south quickly and out of nowhere. you may have a wearing off period or side effect from your medication, you suddenly get fatigued, or if you’re like me, you can get a little foggy (it sort of feels like fireworks are going off in my brain). when you’re having a challenging day, sometimes just doing something small can pick you up and make you feel a little better. it sort of interrupts the cycle just long enough to get you back on track. so i’ve found little mood boosters that can help.

~ go outside and just look at the sky

~ take a walk

~ listen to an inspirational podcast or audio book (if you need suggestions email me i have a bunch i like)

~ read a few pages of an inspirational or funny book

~ listen to some upbeat music

~ call or text a friend or family member

~ meditate

~ clean or declutter something that can be finished in one sitting

~ organize my to do & want to lists

~ watch a short funny video

~ be a tourist in your own city for the afternoon

~ dance or sing for five minutes

what things do you do that help boost your mood? ~kai

savoring walk

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marc-e-marc and i like to pick a new neighborhood and take a walk. it can be a residential, commercial, even industrial area. we park and walk and really try to notice all the different things going on. it’s fascinating what you see, hear, and smell. even areas that we’ve driven through for years take on a completely different look when you walk it and really take notice of all the details. sometimes it’s nice to go into zen mode with your headphones on and walk but this type of walk is stimulating whether it’s in nature or in an urban setting.

so when i was listening to a podcast called the science of happiness, the episode talked about a ‘savoring walk’ which is the habit of taking a walk outside and really noticing the things around you and how impactful it can be in our stress levels. the walk takes on a completely different feel than when you walk and tune out to things around you. so how about a 20 minute savoring walk today?

let me know if savoring walk is something you do and if you find it beneficial.

~kai

online parkinson's community

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i’m very happy with my doctors. hawaii has very few neurologists who are movement disorder specialists, and of those few a couple of them don’t take my insurance or are not taking any new patients, so i feel fortunate to have one. she is wonderful when i visit but i know she is also very busy, so if i need to email or call between visits, the communication is a little on the light side.

it also seems like those of us with parkinson’s are constantly adjusting our medications as our symptoms change, so when i started having some off periods and some anxiety, i thought i’d reach out to an open forum on the parkinson’s foundation website to see what sort of feedback i could get.

wow i had no idea the collective power and wisdom i would find on them. i posted my question and got some very thoughtful and varied responses. i also posted on their ask a pharmacist forum who is moderated by Mark Comes who is a pharmacist who also has pd and received some great feedback also.

of course it doesn’t replace the advice i get from my doctors, but sometimes the best advice comes from others in your same shoes and it’s wonderful to know that our pd community is ready and waiting to help. and by the way, i was also able to help by sharing my experiences with a others posting questions. if you know of other helpful forums please post them in the comments.

boy am i getting a sweet tooth

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i wasn’t really a dessert person growing up. yes i enjoyed sweet things occasionally but didn’t seek them out. but man has that slowly started to change over the last couple of years. then i started seeing articles popping up about parkinson’s and whether it increases you’re wanting sweet things. i don’t know if it’s true or not but one of them mentioned that since many of us with parkinson’s lose our sense of smell (which in turn lessens our sense of taste) that we might be seeking things with a sweeter flavor to compensate.

in any event, each night after dinner, i could really use a piece of cake, or pie, or ice cream! but i try to eat pretty healthfully so i had to figure out a strategy to reign in the beast and here is what has been working for me so far.

some people can have a bag of potato chips in the pantry and eat a few with a sandwich and put it back until they feel like it again. in my case, the bag of potato chips calls my name everytime i’m in the kitchen and i will eat potato chips every day until they are gone. but i know that about myself, so i only buy potato chips when i plan on eating them for a particular meal and purchase only enough for that meal. for me, out of sight out of mind so that goes for sweet things as well.

the next thing is i try to have sweet things only if i make them myself. that slows me down because although i want cookies everyday, i’m not going to bake them everyday and if i do bake them, i keep some for myself and give some away immediately. you’ll also be making a friend :)

the next line of defense is i do have dark chocolate in the house all the time. it’s very dark and strong so you really don’t want to each much, but a couple small squares in the evening is in most cases enough to keep the wolves at bay.

lastly if i do have leftover dessert, i wrap them into individually servings, freeze them, and put them in an extra freezer i have in my storage room. silly as it sounds, just having them removed from the kitchen helps me slow down and gives me one more opportunity to pass on them.

those of you that don’t have a sweet tooth are probably laughing but as i’m writing this i’m thinking of when can i make these salted butter & chocolate chip cookies. if you have any good strategies i’d love to hear them. XO Kai

learning to fall

 
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i was walking up the stairs in my garden very quickly and the front of my foot hit the lip of the step and i fell face forward into the concrete steps. i’m completely fine because i able to catch myself and brace the fall with my hands, but it scared the you know what out of me. my husband also recently sprained his ankle from a fall.

it made me think about falling in general. the reality is we all fall down from time to time whether you have parkinson’s or not and there is so much injury that can come from these falls. so wouldn’t it be important that we all learned to fall correctly? i wish i knew this stuff when i was a kid. so i started to research how to fall and there is a lot of stuff online including techniques for athletes, law enforcement, etc. one of the best is elliot royce who at the age of 95 teaches the elderly how to fall and does it by falling over and over again! he is a falling ninja!

here are two videos that show how to fall forward and backwards. i have an air mattress and going to practice this and i’m even going to see if i can convince my mom to try it. give it a go and let me know how it goes or if you have any tips.

a meditation a day....

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keeps all sorts of things away. i’ve been meditating off and on for the last couple of years and i do notice the difference when i meditate more regularly. i feel calmer, more grounded, and i think the most amazing thing it does is to give me just a second or two more of being present in a situation before i react to it. i’m more able to catch myself and think it through, than automatically react. that has been helpful not only in how i respond externally with others but how i react to myself particularly in dealing with my pd.

i meditate for ten minutes a day, most days in the morning, but anytime will work. i do try to time it when my medication is in high gear as during off periods, it can be difficult to focus. on not so good days, even five minutes is helpful.

the good news is there are so many fabulous ways to meditate. here are a few apps and sites to get started.

insight timer - this is my favorite app right now. it has tons of choices and you can choose the time you have, the teacher, and the subject, all for free. it also has a free course on learning to meditate if you’re new to the practice.

headspace - this app is also a good one. the first ten sessions are free and then you pay after that monthly. it has some very good animated clips on helping to learn and stay on track and all the meditations are narrated by the same person which headspace fans like.

here are two videos on learning to meditate. the first is from pick up limes and the other from dan harris. give it a go and let me know what you think.

technology tools for parkinson's

i came across the website for liftware which are utensils designed for people with a tremor. i have a tremor in my right hand so i switched to using utensils to my left, but it got me thinking about what other things are out there to help people with parkinson’s and other health challenges. here are a few interesting things i found.

the one thing i noticed is that it would be great if some of the items, especially the ones you wear, were designed with a little more style and color. although we may have health challenges, we can still sometimes want to be stylish and unique. look at 65pinkroses in her tricked out wheelchair! love it!

finding the rhythm of your day

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before i retired, the rhythm of the day usually involved waking up early, reading something motivational, look over my planner and plot out the day and week, and then off i went. i as many people do, had more things to do, than time to do it. and i enjoyed it. i felt productive, busy, important, and always had the next project or goal in mind. 

i also had the luxury of retiring over a period of time, giving me space to slowly get used to the pace of my new life. even with that, it has taken some time to find the daily routine that fits my current lifestyle. the physical and cognitive changes from my parkinson's including fatigue, and trying to reduce stress also play a part of how i spend my day. lastly i had to make a mind shift that the things that i do now have tremendous value, even though they don’t involve earning a living or adding to my career path. but enough time has passed and with the help of family and friends and the extraordinary PD community, i have transitioned from seeing what i can’t do but what i can do.

so i started with listing all the things that i could do during a day.

gardening

home maintenance

exercise

cook

read

listen to music

meditate

practice a 2nd language

research family history

volunteer

blog

journal

advocate for PD

meals or time with family or friends- whether that means in person, by phone, email, text, or social media

that’s 14 things and some items can be broken down further into sub categories. then i decided on the ones that i’d like to do daily, or at whatever interval is appropriate. then i tried experimenting throughout the day to see what worked out best for me.

i found that still getting a good morning routine helped me set the rest of the day in a more positive tone. i also found that i exercise much more if i do it first thing in the morning before i get too fatigued. i have coffee and read something inspirational or motivational whether it’s a book or podcast, and sometimes it’s reading a story from the davis phinney foundation website called moments of victory. then i review and plan my day, read my emails. then do some exercise, have breakfast, and some gardening.

after the sweaty work is done i like to get cleaned up and dressed. even if i’m staying home all day i find that showering, putting on makeup, and getting dressed (even if it’s shorts and a t-shirt, we are in hawaii after all) i feel better and ready for the next stage of the day. i try to make my appointments in the late morning to early afternoon. in the afternoon when i’m back home i pick one or two things from my list to do depending on how i feel.

i’m sure that rhythm will change over time and I’ll make adjustments as needed. i’d love to hear what the rhythm of your day is like. oh, and i forgot there is one more thing to add to my list when needed. a nap!