have you participated in a clinical trial

i just read a surprising statistic that 85% of clinical trials for parkinson’s face delays and that 30% never get off the ground because of a lack of volunteers. while we try to live our best life now, we of course want to find new scientific breakthroughs and hopefully a cure. i know for many, just trying to get through the challenges of day are the priority but participating in just one trial can not only multiply the speed to a cure for ourselves, but is a way to pay it forward for the next generation who get parkinson’s.

many people want to participate but don’t how and think it would be too difficult. the michael j. fox foundation makes it simple to find out about what trials are available and can even send you a notice when a trial comes available that fits your parameters. all you need to do is register at fox trial finder. here is a short video from the mjff that’s really interesting. wishing you a happy saturday!

learning to fall

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....

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.

trading in my to do list

photo courtesy of justin ornellas

most mornings as part of my morning routine, i make a to do list for the day. i have a been a big list maker for years and they run the gamut on how they were organized. it’s so fun for me to cross off those items after they are completed.

but i’d like to add a new list called my “joy & meaning” list. it comes from a book i’ve really enjoyed called the gifts of imperfection by brene brown. in it she describes how her lists in the past many times included things that were linked to mostly professional accomplishment, acquisition of more things, monetary goals, and so forth. i have had those same lists and they can be important things to focus on, but most of them required making and spending more money.

the joy & meaning list are the ingredients of how we would like our lives to look like when it’s at its best. it will of course change over time and incorporating all of them is a lesson in progress and perfection but it’s a wonderful exercise and once you start thinking about it, you cant take it in all sorts of creative directions if you’d like. here is my list:

-sleeping well

-cooking delicious & healthy meals

-doing exercise that i enjoy

-gardening

-spending time with family & friends

-being present with the people in my life

-volunteering or doing something for others

-finding time to play, ponder, and putter

-having control over our finances

-doing meaningful work that doesn’t overly consume me

tell me what’s on your joy & meaning list. enjoy your week!

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!

liftware

s'up spoon

readi steadi

rocker knife

my id

dragon software

kangaroo cup

button helper

zappos velcro shoes

digit grip

ez off jar opener

magna ready

finding the rhythm of your day

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!

parkinson's websites

photo courtesy of Justin Ornellas

as i try to learn more about pd, i've found a number of different websites that i like. i read them for different purposes. some have a lot of scientific information, much of which i don't understand. but i like to at least scan through them to see what new research there is or what research is moving through the system.

others have real practical information about medication, exercise, and complementary therapies.  others are just inspirational and help by sharing similar experiences or give me a boost of positivity when i need it. i'm sure there are many others, so please share the ones you enjoy.

the michael j. fox foundation

parkinson's foundation

the davis phinney foundation

a soft voice in a noisy word

parkinson's journey

parking suns

defeat parkinson's

parkinson's humor

fred phillips

out thinking parkinson's

parkinson's news today

the science of parkinson's

fatigue

fatigue is a common symptom for those with chronic illness. it can range from being just annoying, to highly debilitating. for me it can be a low grade background tiredness that i can usually just continue on with my day, to days where i don't feel like doing much all. at first i tried to power through all the time, and found that created a lot of stress. i think it is a combination of trying to keep up with everyone else and trying to live the same life that i lead before i had parkinson's. but this is the new normal for me and just realizing that is a step forward and i'm learning to take on a more nuanced approach.

i've been learning to pay more close attention to my body and mind and getting better at knowing when to push and when it's just a slower day. sometimes doing an activity when you're tired can be helpful and can create some mental and physical energy. once you get kick started you start feeling better. other times i need to just pace myself with a bunch of different indoor activities and do them as i feel up to it. i call these days GTL. it's a silly reference from an old reality show called jersey shore where the stars were these vapid, self absorbed caricatures, and on days where they had nothing planned, they called it GTL for gym, tan, laundry.  silly i know but it makes me smile whenever i declare a GTL day!

my GTL consists of reading several different books, old movies, documentaries, family history research, listening to music or podcasts, gardening, house maintenance, cooking, and journaling. i find sometimes on these days it's harder to concentrate on one thing for a long period of time so i just flit back and forth and don't get stressed about whether i finish anything at all that day. it's about finding the right rhythm for me.

if you have fatigue, i'd love to hear your story and any strategies that you find helpful.