Living w/Style & Parkinson's: Allison Smith

4 v2.jpg

If you haven’t seen Allison’s blog “The Perkie Parkie”, you will definitely want to start following it after you read her interview. Having PD can be difficult at times, and Allison lays out all of her challenges in a open and very humorous way. I love her writing style and want a “wolfpack” just like hers!

Hi Allison, tell me a little about yourself.

Most of my family lives in the Phoenix area of Arizona.  I live in Laguna Niguel, which is a city in Orange County, California and yes, I do live 30 minutes away from Disneyland (the happiest place on earth). I work in a Neurology and Pain Clinic as a Psychotherapist.  But currently I am on disability recovering from a medical setback. I am looking forward to coming back to work this Spring.  I enjoy working with people and sharing stories. This lead me to starting my blog “The Perky Parkie”. I realized how many people were looking for support and the internet helped me expand my reach to all parts of the world.  There is a power of sharing your story.    

 What is your journey with Parkinson’s?

I moved from Tucson, Arizona to Irvine, California for graduate school in marriage and family therapy in 2005.  I started noticing symptoms when I was in my master’s program.  I was 29 years old but didn’t get my “official” diagnosis until I was 32.  I got diagnosed in March of 2010 and then had Deep Brain Stimulation the following month.  Some people are shocked to hear that I went through DBS surgery so quickly after my diagnosis.  They view DBS as a last alternative, but I didn’t want to lose muscle mass, mobility, and difficulty with gait, and wait until I was just “bad enough” to get DBS. It didn’t make sense to me at my early age. My Dad says I am the only girl who would go into brain surgery and come out with a job because after I had DBS, I knew I wanted to get involved in the community that I now belonged to.  

6.jpg

Your blog is incredibly personal and very funny, which is why I think so many people gravitate to it and comment on the posts. I’ve seen 50-100 people comment on recent posts which is amazing. When did you realize that your blog was really connecting with people and did that impact the way you blog?

When I started blogging, (6 years ago) I was just hoping to connect with people in my local community.  I never realized how far my blog traveled until I had a few experiences that changed my whole vision for my blog.  I had a man who contacted me through my blog.  His wife had just been diagnosed with Parkinson’s and they lived in the Canary Islands.  They had a huge lack of resources available to them and had turned to the internet to find information.  With each blog post, this man would translate my words to his wife.  I work in a Neurology and Pain Clinic which allowed me many resources available, so I created a care package stuffed with pamphlets, books and research studies (and of course a signed copy of my book, “I am not Contagious”).  It was such a great feeling knowing that I had made a difference in a complete stranger’s life.   

3.jpg

Despite having your fair share of health challenges, you’re also a licensed family & marriage therapist and a wellness coach! How do you find the energy to give so much to others while having PD? 

I was diagnosed with Juvenile Rheumatoid Arthritis when I was 13, Ulcerative Colitis when I was 18, Colon Cancer at age 24, Parkinson’s at age 32, full hysterectomy at age 36… you can say that I have had a few challenges.  Ha!  I knew that I wanted to help people as I was facing my own health challenges.  I get energy and a feeling of happiness when help others… it gives my life meaning. But with that said, if I have a bad day, I still give myself permission to have an off day.    

 What are you enjoying right now?

Ohhhh, difficult question.   I have many things that I am enjoying right now.  Right now the weather is warm in California so my dog Crash and I head to the lake down the road from my home and walk around.  Right now all the geese, ducks, squirrels and bunnies are about to have their spring babies, I just love watching how life just continues.  

2.jpg

 What is one of your challenges right now?

I have had a challenging medical setback.  I have had 7 medical procedures with general anesthesia and am facing 2 more, one of those happening this week.  It has been difficult to stay positive and hopeful.  But with my strong wolfpack… I have been able to get through it.   

 Do you have a morning or evening routine that helps you start or end the day well?

About an hour before I go to bed, I get into my comfy bed and read a book.  It’s like my wind down time. As long as I don’t read a Dean Koontz book right before I go to bed… I usually can’t put his books down.  

 Do you have any favorite beauty products? 

Must haves are E.O.S lip balm and either a hair tie or hair clip. Because my hair is so long, it’s nice to get it out of my face.. you know, so I can see what’s in front of me. 

How would you describe your style in three words?

Fashion Style: Comfy, simplified, practical.  Writing Style: quirky, honest, respectful.    

1.jpg

 What is something you enjoy doing for self-care?

Love, Love, Love getting massages.  They not only help with the rigidity, but they allow me to shut my brain off… even if it’s just for an hour.   

 You make us laugh on your blog. What makes you laugh?

Animal videos.  I can get sucked into the vortex of animals doing silly things…  I can on YouTube for hours.  Llamas spitting on people, pygmy goats in pajamas, cats taking baths, you name it.  I can’t help but laugh.  Now imagine if you could get a llama to spit on a pygmy goat in pajamas, while a cat in a bath tub watches.  Epic!

the infamous “Crash”

the infamous “Crash”

 What or who inspires you right now?

My friend, Gina.  She is a single mother, who also has her mother living with her, but she is always there to care for me when I am having an off day.  She is a friend who is so giving and only wants to help.  A true definition of friend. I’m blessed to have her in my life.    

5.jpg

 Your favorite animal, a dessert you love (other than frozen yogurt!), and a song you love.

Got to say a sloth.  They always look like they’re smiling and I can relate to moving so slow.  Dessert is anything sweet.  I love frozen yogurt… but that is a given. Song I love: Imagine by John Lennon.

Thanks Allison! You can see Allison’s blog at www.theparkieperkie.com and on Facebook at @perkyparkie.

P.S. Don’t miss Crash’s guest post on The Parkie Perkie!

famous people with parkinson's

the two most well known people with pd are probably michael j. fox and muhammad ali. however there are a bunch more well known people that you might not know about. many in their day, didn’t let the public know about their illness likely of the stigma it would cast. so it’s great to see more public people talk about their pd openly because they have a wide public reach and can help shed light and resources. hopefully we’ll also hear from more well known woman with pd. it’s not the club we want to be a part of, but hey if we have to, we are certainly in some interesting company. if you know of any others, let us know!

alan alda - actor

neil diamond - singer

billy connolly - comedian

linda ronstadt - singer

brian grant - nba basketball player

janet reno - 1st woman to serve as attorney general

freddie roach - boxing coach

michael richard clifford - astronaut

ben petrick - ml baseball player

maurice white - singer w/earth, wind, & fire

charles m. schultz - creator of snoopy

salvador dali - artist

pierre trudeau - prime minister of canada

sir michael redgrave - actor

pope john paul ll - head of catholic church

roger bannister - neurologist & 1st person to run 4 minute mile

fergus henderson - chef

walking barefoot

HipstamaticPhoto-562729599.165505.jpg
HipstamaticPhoto-564717668.162759.jpg

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

say hello

hawaii-1438855_1920.jpg

through the various online parkinson’s forums i read and participate in, i’m starting to notice that there are a number people who become more isolated as their disease progresses. just from my personal experience with pd, i’ve had to retire, do much less socializing, and basically much less of most everything. i’m fortunate that i have good support system and live in an area where it’s easy to get out and see people.

but if you’re not as mobile or live in a rural area, it can be difficult. as time passes and you’re pd progresses, your social networks can get smaller. social media can help. you can see and participate as much as you like and keep up with people in your life. however it can’t replace a real time conversation with someone. i deliver meals on wheels each week and in addition to the meal that’s provided, the personal connection can be just as important.

if you know someone who for whatever reason has difficulty getting out, make it one of your new year resolutions to visit or call them once a week or month, or whatever works for you. just call and say hello. tell them about your day, what’s going on in the world, it doesn’t really matter what you talk about. but i can promise you, it will be a bright spot in their day. and you know what, it might end up being a bright spot in yours.

19 for 2019

it’s that time again. time for goal planning for the new year. i have always loved goal planning and over the years have incorporated many different styles and methods. so i thought it would be fun to do it with parkinson’s in mind. 19 for 2019 is a popular goal setting idea of choosing 19 goals. here we go.

  1. join a boxing for pd class.

  2. join a support group.

  3. join an online pd forum and share your experiences with someone who could use your help.

  4. sign up with the michael j. fox foundation trial finder to see if you can participate in a clinical trial.

  5. commit to doing a little exercise each day.

  6. find something to laugh at each day.

  7. make a donation or give of your time to a pd organization.

  8. eat food, not too much, mostly plants.

  9. meditate for 5 minutes a day.

  10. write down one thing each day that you’re grateful for.

  11. sign up for a podcast about parkinson’s.

  12. practice being present.

  13. order or put together an aware in care kit.

  14. see your dentist.

  15. keep a journal of your changing symptoms and write down the specific items to discuss before each doctor visit.

  16. make a new pd friend either in person or online.

  17. if you shop with amazon, sign up with amazon smile which donates a portion of your purchase to the MJF research foundation or any other charity at no cost to you.

  18. learn and practice how to fall.

  19. whatever it is you tried and didn’t finish. it’s ok. just begin again.

    ~ now it’s your turn. i’d love to hear what are your goals this year?

keeping a positive attitude

lauren-peng-43963-unsplash.jpg

it’s always amazing to me to see how positive, people with pd or other chronic illnesses can be. they are the first to offer empathy, constantly spreading positive messages, and looking for the bright side in tough situations. and that’s in spite of having some really tough days. or maybe it’s because we have some really tough days.

on those tough days you try to go with the flow, ride it out, work through it, keep yourself occupied, remember that it could be worse, put it into perspective, feel sorry for ourselves, or get irritated that it prevents us from doing the things we want to do. any and all of the above. boy, no wonder we’re so tired. but we always seem to remember that the storm too shall pass, and there will be sunshine again.

i look at Instagram and see the daily posts of inspiration and encouragement. I read all the wonderful blogs of people with pd, or an online forum who share their personal journey and i can’t help but feel better at that moment. so the next time you’re having a tough day, connect with someone else who has pd and most likely their support will be just the thing you need to feel a positive attitude again. i’d love to hear if you have had an experience with how someone else with pd helped you through a tough day? ~kai

little mood boosters

juan-cruz-mountford-559414-unsplash.jpg

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

losing your sense of smell & taste

kevin-mccutcheon-698687-unsplash.jpg

one of the potential symptoms of parkinson’s is losing your sense of smell, which in turn lessens your sense of taste. foods become more bland and not as interesting. my coffee in the morning used to be an incredible experience of smell and taste first thing in the morning and although i still love the experience that comes with coffee and my morning routine, the coffee itself is definitely not as flavorful as it used to be.

as i’ve mentioned in a previous post, it might also be contributing to why my sweet tooth has increased. my taste buds might be seeking more extreme flavors to get satiated. so it can be easy to go overboard with salt or sugar while cooking without knowing it. so here are few things that can help boost the flavor quotient of food.

  1. vinegar & lemon juice - both of these can bring an extra depth of flavor to most dishes. you can add a tablespoon of vinegar during cooking or at the end, but use fresh lemon juice at the end of cooking to keep the flavor bright.

  2. citrus zest - aside from the juice, the zest with all the oils adds a wonderful intense citrus flavor. zest the fruit first and then juice it.

  3. spices - you can go in so many different directions with just the use of spices. spice blends are also a great. i have been loving sumac lately.

  4. herbs - fresh or dried they can add tremendous flavor to foods. if you can have a few pots of them growing, even better. something as simple as a large handful of chopped mixed herbs in an omelet can elevate the dish to something special.

  5. condiments - mustards, hot sauces, ko chu jang, harissa, & miso are all great ways to add an umami bomb of flavor.

  6. bitter vegetables - radicchio, endive, broccoli rabe, and mustard greens. adding these to salads, soups, stir fries can add a pop of interesting flavor.

  7. pomegranate molasses - this used to be an exotic ingredient but now can be found in many grocery stores or online. it’s thick and has a sweet and sour flavor and is delicious. add a spoonful to your vinaigrette, drizzle it over roasted vegetables, or brush it over cooked meats while they are resting.

    many of these spices and condiments will last for a long time, so i have a ton of them in my fridge. that way i can cook simply but change the direction with a different spice. i can pick up a package of chicken thighs and pan fry them with a mustard sauce, or smear them with a ko chu jang sauce and bake them, or simmer them in a curry sauce.

    have you started losing your taste and smell and if so what are some other ways that you add flavor to your foods?

    ~kai

can illness bring you joy?

IMG_34772.jpg

having parkinson’s can be difficult. there is not a day that goes by that it doesn’t stay top of mind. you have an invisible chain to your clock because you need to see if it’s time to take your medication. some days it’s difficult to get the energy to do the tasks for the day and to be your own best cheerleader.

but in spite of all the challenges, can illness bring joy to our lives? i say yes. it can bring into focus at laser speed the things and people that are most important in our lives. it can provide gratitude because we understand loss. it can teach us greater empathy to others when they are having a difficult day. it can bring us joy by learning to live and enjoy the present moment.

so when i’m having a down moment, i try to remember not only what parkinson’s has taken away, but what it has given me.

online parkinson's community

aerial-background-beverage-1038674.jpg

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

ice-cream-cone-1274894_1280.jpg

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

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

 
falling-151850_1280.png
 

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....

sunset-691848_640.jpg

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

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!

finding the rhythm of your day

977A6FD8-068C-4F9C-BAB8-98B5EEAF08AF.jpeg

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

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

winks-2383407_640.jpg

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.