a lifestyle site for women with parkinson's
Hauʻoli Makahiki Hou 2024 (Happy New Year)! Marc and I spent new year’s eve at home and enjoyed listening to some fun music and a bottle of prosecco, followed by an impromptu dance in the living room to Seal’s song “Crazy”. We were in bed by 10pm and I call that a perfect night.
Hope your 2024 brings you something new and brings you much joy. 🎉
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?
sunrise walk at kailua beach
It’s a beautiful early morning, as I sit and drink my coffee and listen to the birds in the trees. There is a little breeze so it’s comfortable still. I’ve got some chores around the house to do and then this afternoon is my shift at our local PD resource center. I take calls and walk-ins and provide information to people about PD and work on our newsletter. The saying about getting back more than I give, is really true. I’ve met the most interesting people from all walks of life and learn so much more about PD than I’d know otherwise.
I just finished reading The Art Thief by Michael Finkel. It’s a true story of master thief Stéphane Breitwieser, who over a ten year period stole over 200 pieces of art from museums and cathedrals all over Europe. He never sold the pieces but rather kept them in one room, in the attic of his mothers house where he lived. It’s an easy read at 240 pages and a good end of summer book. I part read the book and listened to the audio version.
Julia Louis-Dreyfus is funny. From her role as Elaine in the classic TV show Seinfeld to her hysterical mile a minute snarky sayings in Veep, she now has a podcast call Wiser Than Me. In it, she interviews celebrity women older and presumably wiser than her. What I love about the podcast is that the women are at an age where they have clearly reflected on their lives and honestly share their regrets and the things that really have meaning to them. I came away with some gems.
Oppenheimer - I haven’t been to many movies in the theater lately, so going to a three hour movie seemed a little daunting, but I’m glad I went. It’s about J. Robert Oppenheimer and the group of scientists who in the 1940’s developed the atomic bomb and how it forever changed the course of history. He is played by Gillian Murphy, who I loved in Peaky Blinders, as well as Robert Downy Jr. and Matt Damon.
I just look at Martin Short when he scrunches his face and it makes me laugh. Only Murders in the Building is in it’s third season on Hulu and I just adore it. It’s a silly murder mystery series with Steve Martin and Selena Gomez and this seasons many guest stars include Paul Rudd and Meryl Streep.
Hope you’re well and that your summer is just what you want it to be. 💗
This was the front page of the local newspaper. Lahaina Maui has been devastated by wild fires this week. The death toll is currently at 80 and expected to rise, and the entire town has been destroyed. We live on Oahu which is a neighbor island, so we are safe but can’t express the sadness that we feel for the people on Maui. If you’d like to help, you can make a donation to the Aloha United Way Maui Fund. This is a reputable charity that has set up a fund, where 100% of the donations will go to helping Maui victims of this tragedy. Thank you.
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?
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
Any plans this weekend? The heavy rains seem to be lightening so there is lots of spring pruning in the garden to do. Followed by reading, watching an old movie and putzing around the house. Perfection. Hope you have a peaceful weekend. Here are a few things I enjoyed around the web this week.
~ Snack anyone? Here are some great photos from the golden age of travel.
~ Speaking of snacks, this sushi roll below looks delicious.
~ Remastered video of commuters in 1930’s New York. The fashions were amazing, the flowy skirts and dresses, the dapper suits, all the wonderful hats, and not one person looking down at their phone!
~ In Parkinson’s News Today there is an article about red light therapy for Parkinson’s. I’m interested in reading more about it.
~ Rogue Physical Therapy & Wellness has in-person and online exercise classes. Their online class schedule looks pretty good. Whenever I hear of a place that provides exercise classes online, I’ll post it.
~ If you’re looking for a good read, here are a few I recently read. The Duchess of Bloomsbury Street by Helene Hanff is a follow up to 84, Charing Cross Road. I’d start with Charing which is the story of Helene, who lives in New York, and a British bookseller that works in a London bookshop. The story is their 20 year friendship through their letters, without having never met. In her second book Duchess, she is finally able to travel to London and it describes her travels. They are both short books, create a setting that book lovers with adore and are a charming read.
~ Lastly I’ll be making this gorgeous Bombay potato recipe this weekend. 💖
One of my favorite things to do is drive to a street in my city that I have never walked before, park and just take a walk. Lauren Elkin can describe why I love it better than I ever could. Have a cozy weekend!
"Walking is mapping with your feet. It helps you piece a city together, connecting up neighborhoods that might otherwise have remained discrete entities, different planets bound to each other, sustained yet remote. I like seeing how in fact they blend into one another, I like noticing the boundaries between them. Walking helps me feel at home. There's a small pleasure in seeing how well I’ve come to know the city through my wanderings on foot, crossing through different neighborhoods of the city, some I used to know quite well, others I may not have seen in a while, like getting reacquainted with someone I once met at a party." ~Lauren Elkin
It’s January, which means new goals for the new year. I love setting goals and tracking my progress. I don’t see it as stressful, rather a way to see new possibilities. I never reach all of them but that’s ok, that’s never the point, it’s to acknowledge the things I did do.
There are things that have been on and off my lists for years but it keeps it on my radar and when the time is right, I actually might do them. I like a mix of small easy things that can be done quickly, which gives me instant gratification to tick the box, there are things are more ethereal than concrete, and there are more complicated items. I did about half of the items on my list last year and I’m happy with that.
In my pre-pd life, I broke down my goals into categories. Relationships, career, exercise/wellness, home projects, & creativity. My life is much simpler now so I have just one list but thinking about each of these categories is still helpful and now with Parkinson’s, exercise & wellness has certainly moved it’s way up the list.
So here we go for 2023.
Weight resistance exercise 2-3 times a week. I’m trying to build and maintain my muscles and bone density.
Be more methodical about keeping in touch with friends and family using the motto “smaller more frequent touches is better than less frequent longer time frames”.
“Eat real food, mostly plants, not too much.” Michael Pollan
Spend an hour a day on focused learning. It can be cognitive and/or physical. A language, book learning, creative, musical, etc.
Find something each day that makes me laugh out loud.
Practice good sleep hygiene. Get outside for 10 minutes when I first wake up to kick start my circadian rhythm, limit screens and food 2 hours before bed.
Get outside for 23 minutes each day.
Read 23 books that I already own (I have a stack of books I want to read and keep getting sidetracked by new recommendations).
Keep a log for 30 days of everything I spend, I mean every little thing.
See a movie in a theater once a month.
Convert my home movie DVD’s to the cloud.
New throw rug for dining room.
On the 23rd of each month I’ll go over my list and throughout the year I may add or remove things if I feel like it. Do you write down your goals/intentions and if so, I dare you to share one! Have a good weekend. 💖
Lanikai beach
Well another year is coming to an end. It’s been a year of transition coming off of the pandemic and many things have changed in how the world works. But things always change and getting comfortable with not being comfortable can be good. It forces me to learn new things, think out of my normal box and can have many positive benefits.
Of course there has been much, not so great going on everywhere, but there will always be an endless supply of sad, traumatic, and anger inducing things happening and it doesn’t serve me well to let that dominate my overall life. Certainly I should do what I am able to help create change, stay educated on the things that are important, and have gratitude for all the unbelievable good that people do each day.
It was fun to do some traveling again this year. Attending the PWR Retreat in Scottsdale Arizona was an incredible experience in pushing the limits on exercise, and visiting San Francisco and New York was exhilarating and brought me back into the world of amazing restaurants. If I could get paid for people watching on vacation, I would be rich.
I’ve spent some wonderful time with family and friends and understand why more studies are showing the importance of relationships as a pillar of longevity. It can be hard to make friends as we get older, so it’s even more important to make time for play, creativity, activities with people who enjoy the same things, volunteering, even chatting with your mailman for two minutes each day. It all adds up.
In my quest to eat better, I’ve made good progress this year. I’ve eaten fairly well up until now but there is room for improvement. There is so much confusion on what is a healthy diet so I crafted a simple plan that works for me. Eat real whole unprocessed foods & limit sugar & dairy. That’s it. It’s amazing when I run each food that I’m considering eating through that simple test, how much better I’m eating. The hardest part for sure is my sweet tooth but I’m working on it.
Parkinson’s continues to get more exposure through the many studies, the amazing and creative advocacy that people do to bring awareness, along with the national plan to end Parkinson’s act. It feels like albeit slowly, the rocket ship is being built and getting ready to explore ways to prevent and slow the progression of PD.
I want to thank you most of all for reading the blog and reaching out to me. I look forward to a new year with all the ups and downs that life brings us (hopefully more ups than downs) and having each other share our experiences.
Happy Holidays!
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.
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.
a stroll through Central Park
Hubby and I just returned from San Francisco and New York and although it’s still hot in Hawaii, I finally feel like it’s fall. Both cities were vibrant with people out walking and restaurants bustling. There ares lots of shop fronts that were out of business due to the pandemic but I think that’s everywhere, and that will take some time to get back to normal. We ate lots of delicious food and drinks and saw a Broadway show called Come From Away. A couple of my favorite meals were cocktails at The Campbell Bar in Grand Central Station, tapas at Little Spain, and Lombardi’s Pizza. We really kept the plans to a minimum this trip and decided to just go with the flow and it worked out beautifully.
All of these tables were filled with kids playing chess
I made sure to pace myself and rest for a little bit in the afternoons which worked out well. Marc had a few things to do in the city so I flew there by myself and stopped in San Francisco to see my son Austin. I booked my seat with my right side facing the aisle, which is my more symptomatic side. I left for the airports with plenty of time so that I wasn’t stressed and tried to time my medications so that they were hitting at the right times. Even though I only had a carry on, I checked it anyway because I wanted to get through security and board the plane without having to lug lots of stuff and deal with the overhead bins. All of those things really helped make the flights easier to navigate with PD.
The slight chill in the air in both cities were fantastic and the people watching on the streets and what they were wearing was just what I needed to kick my brain into fall. There is no real fall or winter in Hawaii so you have to trick your brain into thinking there is. I’ve picked up a few fall scented candles, pulled out some darker colored clothes in my closet, along with swapping accessories like bags and shoes. I also have my pumpkin spiced tea, bookmarked my cozy ambience rooms on you tube, and darker nail polish and I’m ready for fall!
Have a good weekend ❤️
~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 💖
moonlight off the Kona coast
This last weekend some friends of mine opened a fitness center for people with Parkinson’s called Fitness Therapy Hawaii. It’s the only gym that I’m aware of in Hawaii exclusively for pwp and I’m thrilled that there is one more option for our community. There was a traditional Chinese dragon dance for good luck and a blessing done by a Kahu which is a Hawaiian pastor.
I am part of two support groups. I’m in a young onset group that meets at Murphy’s Bar & Grill. It’s more of a social get together and we have fun each month talking about all sorts of things. The other one is a group I co-facilitate which is more of a traditional support group with speakers and specific topics. The regular group has been virtual since the pandemic started and we are looking forward to having our first hybrid in person/virtual meeting next month. The connection of a support group for people with PD can be so rewarding. I know the timing has to be right in our journey with PD and finding the right group is also important. If you’ve tried one before as I have and found that it didn’t work for you, try again. It may be different this time around.
What I’m watching - The series The Bear on Hulu is about a Chef who has been working in high end, world renowned restaurants, moves back home to Chicago to take over his brothers struggling Italian sandwich shop. It’s fast paced, funny although with some serious moments and will make you want to eat an Italian beef sandwich.
What I’m reading - I just listened to the audio book called This Will Be Funny Later a memoir by Jenny Pentland. Jenny is Rosanne Barr’s daughter and I love a memoir by a child of a celebrity. It’s interesting to hear from their perspective.
Have a good week 💖
“It’s not what you look at that matters, it’s what you see.” Henry David Thoreau
Well, add another PD symptom to the list. Lately I’ve been biting the inside of my mouth very easily when I eat and I just couldn’t figure why I would do that. Then I saw JImmy Choi’s IG post and he has the same symptom and explained why that happens. I unfortunately can’t crush a watermelon with my arm.
~ It’s the height of summer so I’ve been trying to keep meals on the easier side. Lots of giant salads with some protein has been on rotation like this Vietnamese style chicken salad made easy with bagged shredded cabbage and rotisserie chicken. Of course it wouldn’t be summer without my favorite Summer Strawberry Cake. My favorite thing I ate this week was this fabulous Baba Ganoush which is an eggplant dip that I’ve been eating with crackers, pita chips, or toast. I mixed in a spoonful of this harissa which added a delicious smoky kick.
~ The summer also adds more sun and the possible increase in melanoma for those PwP, so it’s important to wear sunscreen. In Hawaii it’s basically summer all year long so I’ve tried many sunscreens. I prefer mineral to chemical sunscreens on my face but many of them leave a chalky white finish. Here are two that are my current favorites and they all work great under makeup. EltaMD has several different types of sunscreen and all of them that I have tried work well. Maelove is light and not greasy and is also a great primer under foundation. I haven’t been able to find a good mineral sunscreen for my body so I use Light as Air by Banana Boat.
~ Lastly I saw that Pottery Barn has a new line of furniture for people with disabilities. It’s nice to see function with style. There are some beautiful furniture, bath fixtures, and lighting. I like the bath grab bars.
Well I hope you have a good weekend. We are helping mom with some house projects and I’d like to get in a swim. ❤️
“Vitality means moving through life with energy and vigor. Making deliberate choices, and putting to good use the time and energy that we have been granted.” Twyla Tharp
photo at top source
image: source
~ July is usually a busy month for me with the flurry of birthdays, graduation parties and get togethers. I was recently on a PD group call where a person described her difficulties with making plans to do things with others, because often when the time comes to do them, she is too fatigued or not feeling up it.
I think that feeling is pretty common to some degree when you have PD. Our physical and mental hour by hour ups and downs can make it challenging on some days to do anything. With all the events this month, although I’m grateful to be a part of the many happy occasions, it can be a challenge. So I’ve come up with a few thoughts that I go through, that help me manage those situations.
Just say no. It’s OK. There are many things that won’t make any difference to you or anyone else if you don’t attend. Don’t put it off by saying I’ll get back to you or let me look at my schedule. Just say thank you but I can’t make it and be done with it.
You’re not thrilled about going, but it’s important for you or someone you know that you attend. This is where you implement the “if I can’t get out of it, get into it” strategy. Don’t say yes and then complain to yourself or others about having to go. Think about someone that will be there that you look forward to catching up with, something you might learn from it, some new place you haven’t been to, or some food that you’re looking forward to try.
Don’t plan it. Not everything needs to be planned. If you’re feeling good, call someone and see if they want to go for a walk or grab a coffee, or anything that you’re up for right then. Now realize that this is a numbers game because others might be busy, but who cares. And if you explain to them beforehand that you want to capitalize on the moments you feel good, and would they be open to last minute requests if they’re free and who knows, they might also want to do the same with you.
My mom is great at this. She gets an idea to do something and she want’s to do it now, and it’s fun to get that phone call from her. I think it’s also a fun practice to be a little more spontaneous.
Push yourself. Or maybe nudge is better. I find once I start something, I’ll get the energy and focus and start enjoying it more. This is when planning ahead is helpful especially for reoccurring events like exercising. It takes out you’re having to make a decision on whether you’re going to do it or not and once you get going, you’re glad you did it.
Lastly, sometimes you just do things that you don’t enjoy but you know you will feel better afterwards. In these instances really focus on what you’ll feel like when you’re finished. This is a very minor example but every morning I take a cold shower, and when I step in, it’s cold (duh)! But when it’s done I feel fantastic and invigorated. So I’ve learned to think about that specific good feeling when I’m taking the shower and I (almost) look forward to it.
How do you deal with doing things when you’re not up for it?
~ I have a couple of books to recommend. For David Sedaris fans, his latest book is Happy Go Lucky new essays about his life. This one has interesting stories about the pandemic and his father, and a very funny story about his teeth, and as always, you must listen to the audio version. Another is a classic by Agatha Christie The Murder of Roger Ackroyd which I think is one of my two favorites, the other one being And Then Their Were None.
I do enjoy a little royal watching and here is a book and a movie rec. The book is The Palace Papers by Tina Brown. Tina Brown is the former editor of Vanity Fair and The New Yorker and has written other books on the royals including The Diana Chronicles. It was interesting to learn about Camilla, The Duchess of Cornwall and more of the background goings on with the Harry and Megan exit. It wasn’t gossipy but seemed to be a well researched book with the just enough peeking behind the curtain details.
The other is a documentary called Elizabeth: A Portrait in Part(s). It’s broken down into different chapters of her life and it’s amazing how much of history she has lived through. A wonderful watch. Have a wonderful week!
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.
Hi all, it’s been a while since I’ve posted. I have no dramatic reason other than every time I started writing, I just went blank. So I took that as a sign to take a break, and now I’m really excited about being back. Thank you to all of you who sent me an email checking to see that I was OK. Our PD community never stops looking out for each other and I really appreciate it.
I just returned from Scottsdale Arizona for the annual PWR Retreat which is a PD exercise retreat. It was an incredible six days of exercising for three hours a day. Yes I said three hours everyday. Followed by speakers with lots of good information. I have never been so exhausted, but it was very motivational to see how much I could push myself. This photo was our amazing Hawaii crew that made the experience memorable.
It also made me realize how incredibly lucky and privileged some of us are, and how that effects the type of medical treatment we receive, the medications we take, and all the support that surrounds us. One of my goals this year is to learn more about the disparity in our under served communities and how I can help, and I’ll do follow up posts as I learn more.
Summer is here, so it’s time for weekly shave ice and to plan for the season. PD apathy is a real thing and it can become easier to let the year fly by without planning little extra enjoyments each season. Just a few small things each season help give me a nudge. Here are a few of my summer to dos.
Summer Reading – I want to read outside more this summer. My favorite times are early in the mornings or late in the afternoon as the sun sets, I can sit on the lanai or on my picnic table in the garden.
Swim - I want to start swimming again. I’m having some knee issues so I’d like to include more lower joint impacting exercises into my routine.
I want to have fun - It seems the older I get, the less I play and I’m on the lookout for being more playful in everything I do, and summer seems like the right time to kick it off.
Paint my guest bathroom – It’s time for a refresh. I have painted more rooms than I can count and it’s so satisfying when it’s done. Painting the edges or trim is the tricky part, but my left hand can still do it! If I just do one of these things, I’ll considerate it a win. What are your summer to dos?
Lastly, I’m so excited about my baby pineapples. They are from pineapples I bought at the store, cut the tops off of, put them in water until roots formed, and plunked them into the garden. They are just adorable. That’s all for today. Just a quick post to say I missed you and I hope you’re healthy and doing well.
I love end of the year, best of lists. The last two weeks there has been a plethora of year end wrap ups with everything from Favorite audiobooks and listening experiences of 2021 to The 10 Most Popular Dessert Recipes of 2021. So why not add one more. These are my top 10 tips that helped me live better with PD in 2021 in no particular order.
Exercise almost every day. I found that exercising moderately every day versus harder workouts several times a week helped me sleep better, feel better, and look forward to exercising each day.
Meditating for 5 minutes a day. I know it’s not a lot but it helps me throughout my day and gives me a beat longer to respond to negative things, which is sometimes all I need to respond better.
As one of my favorite PD bloggers Allison from The Perkie Parkie says, build your wolfpack. Creating a support system of people who uplift me is invaluable. If you don’t have family or friends, start creating them by meeting others with PD and you’ll be surprised by having that one thing in common can help you start a connection and before you know you may find other things in common.
Having a purpose. Finding even the smallest things are meaningful to me, and create curiosity and interest in my daily life.
Having gratitude helps me snap out of my unavoidable pity parties. I don’t mean always seeing through rose colored glasses. I mean realistically looking at my challenges, but also looking at all the things that I am very fortunate to have.
Eating less dairy, processed foods, and eating more plants. I feel better when I eat better. Duh.
Look for ways to laugh, smile, and be silly. I feel fantastic after a laugh. No wonder people want to become comedians. Can you imagine the ability to make a room full of people laugh out loud!
Always be learning something. It helps my cognitive abilities, pushes me to try new things, give me interesting topics to discuss with other people, and the satisfaction of learning something new.
Happy Holidays to you and hoping the new year brings you more joy than challenges. 🎄
hi i’m kai. welcome to my lifestyle site where i share about living well with parkinson’s and embracing the everyday. enjoy a look around!