looking presentable with pd

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

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

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

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

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

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

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

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

is it hot in here or is it just me

⭐ The summer heat is in full bloom in many areas, including mine. Although I don’t like temperature, I love the long days and try to garden early in the morning or late afternoon when it’s a little cooler. In the morning I do a garden walk around and see the little changes. Yesterday there were little strawberry guavas. I leave a bowl on my counter and nibble on them throughout the day. Green onions, basil and the last of the little spicy radishes, they’re delicious pickled. The gardenia flower is a favorite. Even though my sense has diminished, I can still smell these beautiful flowers.

⭐ Have you been keeping up on the controversy about the FDA granting authorization to Biogen for their Alzheimer’s drug Aducamunab? Here are two very interesting reads from Science of Parkinson’s and Tomorrow Edition.

⭐ Easy meals are perfect during the summer and this Salmon Salad from Dinner-A Love Story has been a favorite this year.

⭐ During the pandemic, like everyone else, I exercised mostly at home. I tried different online classes including kickboxing, Zumba, HIIT, and yoga. My usual schedule was pretty typical working out pretty hard several days a week and have days off in between so that your body has time to recover. That was fine during my life pre-PD, but in the last few years that wasn’t working so well for me. I noticed that I’d work out hard and for the next couple of days I was overly tired and it just didn’t feel good. Which lead me to start re thinking why and how I should exercise, and to find a way that it would be enjoyable and rejuvenating, not energy zapping. My goal for exercising is to keep my body healthy, keep up my strength, endurance, and flexibility, to help me live a long and high quality life with PD. It’s also to help reduce stress and improve sleep and something I want to do with consistency and look forward to.

So I started changing my routine to a more moderate pace and time frame and increased the number of days to six days a week. Monday through Friday I do about 30 minutes of moderate exercise, on Saturday I may do the same or something that’s longer or more intense, and then rest on Sunday. After doing this now for about six months, I am so happy with this regime. I look forward to exercising every day because I know it’s not going to overtax me and instead it actually makes me feel good afterwards instead of tired. I also don’t have to think is it an exercise day or not, so the consistency keeps building on itself. We are all PD snowflakes so this is just what works for me. But if you are struggling with your exercise schedule or having a difficult time starting, I encourage you to try different things until you find the right one for you.

⭐ PD Symptom of the Week - This month’s favorite (not) symptom is I have weakness in my right arm and leg. My symptoms like many people are more pronounced on one side of my body, and it’s a chicken and egg scenario that I don’t which is causing which. I have problems with my right knee, shoulder, and gait. So of course I favor my left arm since it’s stronger, which makes my right arm weaker and round and round we go. I’ve been consciously trying to force myself to use my right arm more on everyday tasks like yesterday when I was vacuuming. The fun never stops.

⭐ Lastly, my sister gave me some nail polish strips. If you have a hard time painting your nails because of your tremor, these might help. Their pretty simple to put on, there is no drying time, and they last a long time. I find that the light colors are more forgiving and don’t have to cut perfectly.

If you’re in the US, Happy 4th of July weekend! ❤️

Weekend PD Notes

Hello lovely friends, what are you up to this weekend? Marc and I are enjoying having his parents visiting this week. It’s also my mom’s birthday so we’re having a birthday lunch on Sunday.

🌟 Last week there was a post on the World Parkinson Congress blog by Mariam Bram. The title of her post is Shame and Stigma of Living with Parkinson’s. I love how she describes what she calls “radical acceptance: the act of living authentically with my vulnerabilities embraced, including Parkinson’s and all of it’s symptoms and limitations”. Read the post here.

🌟 The WPC also held its virtual congress. In addition to the in person event they hold every three years, they will also hold yearly conferences virtually. It has 68 events with lots of topics from science to wellness. It’s available online until August 19th and you can watch sessions anytime. I particularly enjoyed the Living well with Parkinson’s sessions.

🌟 The Parkinson’s Foundation, in collaboration with the American College of Sports Medicine, has created new exercise guidelines for people with Parkinson’s. At the bottom of the article is a handy poster that you can click on and save as a PDF. If you’re new to exercise, or have been falling behind because of the lock down, don’t be daunted. Take it in small steps and do a little exercise every day and build up. As the saying goes “What you do every day matters more than what you do once in a while”.

🌟 @yopdclub on Instagram has some great inspirational quotes from all sorts of interesting people.

View this post on Instagram

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

🌟 Lastly, a site called Reasons to be Cheerful. Just what we all need…………. Have a wonderful weekend. 💖

(Image is the Strawberry Cake from Smitten Kitchen that is a summertime favorite of ours)

shall we get some exercise

hanauma bay, oahu

I am always on the search for ways to motivate myself to exercise and ways to keep it interesting. Practice makes progress.

The benefits of exercise are incredible. It strengthens our muscles and bones, keeps us flexible, improves our endurance & energy, improves balance and gait, helps mood, anxiety & depression, helps control weight, reduces your risk for heart disease and certain cancers, improves sleep, digestion, constipation, incontinence, may help slow the progression of PD, and increases our chances of living longer.

With all these benefits you’d think everyone would be exercising, but much of whether we exercise regularly or not, is not based on will power as many of us think. Much of it is based on habits and friction. We don’t decide whether we want to brush our teeth or not each day, we just do it because it’s a habit. The friction is whether we set it up to make it easier or harder. Brushing your teeth is made easier because we keep the toothbrush and toothpaste conveniently in the bathroom near the sink with water. But if we kept them in the trunk of our car and we had to go out and get them, use them, and then return them to the car, we would likely brush less.

So lets start with reducing the friction or obstacles that make it more difficult. Make it easily accessible. If you have to set up a bunch of equipment or drive far, you’ll likely do it much less. The simplest is exercising at home. Whether it’s online classes, walking in your neighborhood, or having equipment at home. Next would be things available near you. Going to classes or a gym near you, a park, or pool.

Next is to figure out what will motivate you. If you’re with people a lot of time, you may look forward to some time alone. If you need extra motivation, you may want a workout buddy or have a set class, so you are accountable to someone else to show up. If you like social media, post your exercise goals and journey there. Your social media friends will be happy to cheer you on. Make less friction by making it easier, and add friction by making it harder to say no.

Then start creating the habit. The biggest reason I see people quit exercising is because they try to do too much, too quickly. When I first started meditating, I started with three minutes a day. That may sound too easy but I knew creating the habit was going to be the hardest part. I did that daily for several weeks before I added on time. Do the same with exercise. Plan your week ahead of time and start slow and don’t increase the time, until you show up without hesitation. Then make adjustments. Remember, you’re creating a lifelong habit.

Pair it with something else. Do you enjoy listening to audio books or have a favorite podcast? Tell yourself you can only listen to it while you’re walking. Same for your favorite TV show and your treadmill. Another great pairing is a walk and talk. Set up a phone call to friend or family member while you walk.

Write it down. Tracking your progress can help keep you motivated. I love to track my progress on everything. It’s a great reminder to see little increments of improvement that sometimes you easily forget or don’t see because they are small.

You can also include more movement throughout your day. Dan Buettner is the author of the book The Blue Zones. In it he discovered seven communities around the world that had the largest amount of centenarians and observed their lifestyle and habits to see what similarities they might have. One of things were daily exercise. Not formal exercise, but movement throughout their day. Once you start taking the stairs instead of the escalator, park in farthest away section of the grocery store, you start seeing all the little possibilities that can add movement into your day. I started cutting my own grass and pruning the trees in my garden and I love all the exercise I get from it.

Have alternatives. My energy level is very different not only day to day but hour to hour. I have a list of things that I can do to exercise, so regardless of my energy, I can do something. Some days I can only manage light stretches and that’s fine. I always feel better doing something.

Lastly, don’t compare yourself to others. Everyone with PD is a snowflake. We are all at different stages in our lives and the goal is to find what works for us, what we enjoy, what we can do today, and not what anyone else is doing. Push yourself to do something small every day, but cut yourself some slack on trying to keep up with others. Do what you enjoy, and that may mean trying several different things before you find what that is. As the saying goes, “how do you eat an elephant, one bite at a time”.

what day is it?

Just kidding, I know what day of the week it is, but many days I have to look at my calendar to see what the date is, they are all blurring in lumps of the month! Last week I had my first telemedicine appointment with my Neurologist. I don’t have a lot of changes since my last appointment so it was more of a maintenance appointment, but it was interesting to see how it differs from an in person appointment. As with other online meetups there is a less of a connection and conversation is always a little stilted because you can’t pick up the natural cues from each other. But overall, it’s another good option to have and one of the positive things from this pandemic is that the telemedicine field is fast forwarding at a much quicker pace than it would have otherwise, and hopefully that translates into more medical access for more people.

Ever since I read the book Breath, I’ve been doing a few different breathing exercises which I’m really enjoying. I do a fast paced set in the morning before my workout or a slow set in the evening to help me relax. I’m also trying a little self experiment on my sense of smell. I read that loss of smell can happen after getting a virus or other illness but in most cases it will return naturally or could be trained to return. Although I’ve read nothing saying that the training could help PwP who have a diminished sense of smell, I thought why not give it a try. I found this site that shows you how to take a blind smell test. Then for the next 3-4 months practice smelling different scents, and then take the test again at the end of the 4 months.

I did the initial test with vanilla, coffee, lemon, rosemary, shoe polish, toothpaste, & mustard. I got 5 out of 7 correct but what I noticed was that it was difficult. All of these items have very distinct smells so I thought it would be easy. And on many of them I had to think about it and sort of pick apart the different notes, in order to get it correct. I thought the rosemary was the shoe polish! Let’s see how I do in a few months.

If you like reading and traveling, you might enjoy a podcast and website called Strong Sense of Place. Each episode features a place and share some fun facts about what makes it interesting and then recommend five books. It’s a little virtual vacation.

I have a couple of book recommendations this week. Eight Perfect Murders by Peter Swanson is a good one if you like the classic old school mystery genre. The main character owns a book store, and wrote a blog post about the eight books he thinks have the perfect murder set up. Years later, he is visited by an FBI agent saying that there are some things happening that are related to his blog post. That’s all I’ll say so I don’t give away too much but part of the enjoyment of this book is that you’ll want to look up the eight books on his list.

The other book is Maybe You Should Talk to Someone by Lori Gottlieb. I’m still reading it and really enjoying it. It’s a memoir about a therapist, who needs a therapist, and honestly describes our shared human challenges with great humor. It’s a top non fiction book for 2019 on many book lists for a reason, it’s terrific.

Lastly, I know this is my millionth berry recipe but I can’t help it. This Summer Berry Crisp (picture source) recipe from 101 Cookbooks is delicious. It’s got a little twist on ingredients and is super easy.

 Let me know what’s going on with you. I hope you have a good week. xo

sitting comfortably

Sometimes I can’t find a comfortable position to sit in.  Some part of my body hurts, it’s difficult to sit straight up, or my internal or external tremor is being a huge pain in _ss. So, I have several spots around the house where I can read or work on my lap top, depending on what’s the most comfortable at the time. I’ve haven’t heard anyone talk about this so I’m wondering if you sometimes feel this way.

Several of these places might seem the same but just the little difference of height, angle, or firmness can be the difference between comfortable and uncomfortable. Also having several options is helpful as I often move throughout these areas each day.

Desk – Setting up the four points really helped my comfort level. First, I set my chair at a height where my arms are at about the same level and my keyboard. Then I placed my monitor on top of a book to bring the top of the monitor to my eye level. I have a footstool under the desk to keep my knees up to thigh level and feet flat on the stool.  And lastly, I place a small pillow on the back of my chair to keep my posture straight (gracious, it’s like setting myself up in the space shuttle).

Sofa or Arm Chair – When I’m sitting on my sofa I tend to start curling forward with bad posture, so I put a pillow behind by back that’s large enough so my feet sit flat on the floor. If I’m using my laptop on the sofa, I use a footstool that I can put my feet on and push against it to keep my back straight. I have several ottomans, footstools, and poufs which might seem excessive but they are super helpful.

Dining Table – When my tremor is making it difficult to keep my book steady, reading on the table is a help. I can prop up my book.

Yoga Ball – I sometimes replace my desk chair with a yoga ball. When my tremor is bothering me, moving feels the best and with the yoga ball I can make small movements while still sitting. It also helps me practice my balance and helps strengthen my core. I like to keep the ball full and stiff.

Floor Cushions – If you’re not used to sitting on the floor this might be challenging at first, but because you can move around and sit in several ways, it can become comfortable. It’s also a great way to build up your strength as the act of sitting and getting up from the floor works many areas of your body.

Bed – Sitting on my bed with my laptop or book. A fold open breakfast tray and again, with the pillows, but they really do help! If you have any suggestions, please let me know or share them in the comments.

an unexpected gift

When you have a degenerative disease, one of the most challenging things to deal with is the uncertainty. The uncertainty of tomorrow, next month, and next year. At the same time you’re feeling uncertain about the future, you’re also mourning you’re previous normal. You may have just gotten used to the latest symptoms and medication balance, and then they change.

That’s why I think PWP have become so good at living in the moment. Now while it’s true for everyone that we don’t know the future, I think those with a degenerative disease, along with their caregivers and loved ones, feel it in the forefront of their daily thoughts.

Before I had PD, I took for granted that if I couldn’t do something today, I would able to do it in the future. Now I am much more present, aware, appreciative of things in the moment because I understand all too well that it may change in the near future. Having PD is certainly no gift, but living and appreciating little things in the moment has been an unexpected gift. A gift we can practice giving ourselves each day.

just begin again

Eight years ago when I was diagnosed, I went to a support group meeting. It was all new to me and I didn’t know much about Parkinson’s. Marc and I drove down on a Saturday morning and sat down with the group. I didn’t say much, just observed, and at the end of the meeting I walked to the car and burst into tears.

It was overwhelming. It was too much too fast. I looked around the room and saw others who had advanced stages of Parkinson’s and I couldn’t process it. Here I was, young and physically fit, and in my mind I fast forwarded myself to think about the worst case scenario and it was frightening. I never went back.

That was eight years ago and today I went back. The people were wonderful and I’ve had enough time to put things into perspective, and am very glad that I went. Sometimes when you try something and it doesn’t work, regroup and just begin again. Have a wonderful weekend.

~xoxo Kai

getting dressed with parkinson's

Getting dressed each morning with Parkinson’s can be a challenge. You may be stiff from the lack of medication overnight, you didn’t sleep well, or you have tremors and/or dystonia. Gosh, all of that sounds exhausting and makes me want to go back to bed. Have you ever had that experience of running to the store in your schleppiest look, praying you don’t run into someone you know. It can be tempting if we don’t have the energy or plan to spend the day at home, not get dressed because hey who is going to see me. Me is going to see me, that’s who.

So it’s important that we get dressed every day, even if we have no place to go. Feeling put together helps us be more confident and prepared for the day ahead. So here are a few tips for getting ready in the morning, even it’s only for greeting the mailman.

Clothing:

Lay out your clothes for the next day. That may include your exercise outfit and your outfit for the day. If your stiff and foggy in the mornings, it will prevent you from having to lift, bend, and choose all the items. If you need more motivation to exercise in the morning, you can even sleep in your exercise outfit. If buttons are challenging, look for tops or dresses that you can pull over your head or that have snap buttons in front. Shopstyle has many choices and this cute cotton seersucker dress from Etsy looks perfect for spring. This denim skirt from Uniqlo is stylish and affordable with an elastic waistband.

Makeup:

Putting on makeup might be difficult first thing in the morning so you might take your meds, get dressed and wait a bit until it kicks in before you do your makeup. Combination products like IT’s CC cream which is a moisturizer, sunscreen, foundation, and concealer all in one can be easier than applying them separately. Cream blushes and eyeshadows can be applied with your fingers which may be easier than brushes to apply. Revlon colorstay creme eyeshadow is long wearing and comes in many colors. Lip stick, gloss, or tinted balms with translucent color is easier to apply than dense pigments with opaque colors because they are more forgiving and don’t need as precise edge lines.

Jewelry:

Fiddling with tiny jewelry clasps can be difficult, so adding magnetic clasps can be a big help. You can use them on necklaces and bracelets. Also wearing long necklaces that can go over your head can help avoid clasps all together. In place of a necklace you can also wear a scarf that can add that little pop of color and finish an outfit instead. Here is an interesting video from Nordstrom that shows 16 ways to tie a scarf.

Handbags:

I’ve found purses and bags that have wide openings are best for me. Also having a zipper or clasp at the top is easier to access than one with a flap over top. Having several sections and compartments make it easier to find things and save time fumbling around for everything. I feel the most stressed when I’m paying for something at a store with a line of people, fishing around for my wallet and credit card, so having items organized and easy to grab is a must. A cross body bag is great because you have both hands free. I purchased this bag about six months ago and have been super happy with it.

5 tips for exercising with parkinson's

We hear it all the time. If you have Parkinson’s, exercise, exercise, exercise. It can’t be said enough, because of the importance it plays in our quality of life. There is lot of information on which exercises are better for PD than others, but I think most agree the best one is the one you will keep doing. So here are a few tips to get started. Of course check with your doctor to help find what’s healthiest for you.

1. First figure out your personality style. Will you be able to motivate yourself on a regular basis to do the activity or would it be helpful to partner with someone for added accountability? Do you want a structured class with set hours every week or do you want something more flexible where you can go at different times? Some people prepay for their classes so that they feel like they have to show up or lose their money. Others may go to a center where there are classes all day long and they can attend on a more flexible schedule. Do you like exercising with others or do you like the solitude of working out on your own? Thinking about the structure that would motivate you the best is important to help you stick with it.

2. Start slow. The biggest reason I see people stopping an exercise program is that they overdo it in the beginning and end up quitting. One of the keys of staying with exercise is to make it a consistent part of your routine, and in the beginning, this may be more important than the exercise itself. So let’s say you’re going to start walking more regularly. Don’t start by planning for 3 days a week of long exhaustive hikes. Start with a short 10 minute walk from your house each day. It will start to become just a part of your day and from there you can make your walks longer, change the days and venue but you won’t have that beginners burnout.

3. Make it easy. If you joined that great gym but it’s 45 minutes from your house or work, are you really going to go on a regular basis? That gym may have all the latest and greatest equipment, but if you aren’t using it then it ain’t that great. There may be a class easier to get to that might be more limited in what they offer, but if you’re using it more, then that’s the better choice.

4. It doesn’t need to cost much. I know that for many people, the cost of joining classes, gyms, trainers, etc. can be out of their budget, but there are many alternatives to look into. There are many quality online classes that you can do in the privacy of your home for free. Yoga with Adriene is a fantastic online yoga channel. She posts full length classes every week and her archive of classes is the best. Fitness Blender has a variety of workouts that you can tailor by type, difficulty, time, and then save the classes you like to go back to. It has low impact, HIIT, weights, cardio, and much more.

   If you have cable TV and access to your PBS station or similar public broadcasting station, most have several exercise class series. Mine has Classical Stretch that I record each week on my DVR and now have 50 classes that are a treasure trove for me to use.

   Many community centers have inexpensive classes of all types. At a local community college here, there are several adult education programs that usually include an exercise class.

   Look for a YMCA or YWCA in your area. They are many times less expensive than a traditional gym and many have exercise classes specifically tailored to those with PD.

   Public swimming pools. We have a few local city pools that have hours specifically for lap swimming and other times free swim.

   I have a pair of light dumbbells that I can do a variety of exercises with, and if you look on Craigslist, you can find them very inexpensively.

   Then of course there is walking which is the cheapest. You can not only walk around your neighborhood but I like to choose another neighborhood. It’s fun to see other homes and shops. Walk in a park, on the beach, on a mountain trail, even in a shopping mall. The change of venue can be endlessly interesting.

5. Just start. It doesn’t need to be perfect and you don’t need to beat yourself up because you can’t do something perfectly. No matter what, you always feel better that you did it!

   Do you have any good tips for exercising with PD?

if you have parkinson's, you...

~ you can still dream, make big plans, & do them.

~ you are more than the collection of PD symptoms that others see.

~ you are still required to push yourself to grow, to learn something new.

~ you are allowed to feel sorry for yourself when you’re having a hard day. But only for that day. Wake up the next day with an empty cup ready to be filled, and with gratitude.

~ you are not alone.

~ you are still fabulous.

~ you are still beautiful and desirable.

~ you can try, and fail, & that’s ok, because sometimes that’s the only way we know how far we can go.

~ you are enough.