My husband and I have found that life with PD is easier if we incorporate a fairly routine schedule for our days. This includes regular mealtimes that won’t interfere with meds and naps to conserve energy. But just because we have decided to have a meal at noon doesn’t mean it has to become “routine”. I have found that I can mix it up simply by what I serve or where we eat. It may be breakfast for lunch, a trip to our favorite fast food place or outside for a picnic in nice weather.

Neither of us are into daytime television shows but do sometimes turn on music during afternoon activities. It’s always surprises me that the slightest change to the environment can energize the day and make it more fun for both of us. We have very different tastes in music and it often leads to teasing and jokes as we sing along to old favorites from his youth or mine. Evenings may find us playing a game rather than turning the tube on at all, we love Scrabble and Backgammon even though we may fudge the rules on occasion.

It really is possible to break the routines without breaking the necessary schedule. Give it a try and have some fun today!

My husband and I met through work; he was the guy in the office who always sent out the jokes. He would scour the internet to compile funny stories and then share them on a daily basis. I remember looking forward to getting those emails because they always made our workdays easier. He was also the prankster of the office. I recall the time he convinced a co-worker that there were mice in the office even to the point of bringing in some dog hair and building a “nest” in his buddy’s desk. He loves to have fun.

As his PD progresses, being playful and spontaneous has become more difficult. He often avoids social interactions even though the witty thoughts and comments are still there, because they are slower in coming and can seem awkward or out of place. Reading his facial expressions is more challenging these days which means people don’t always know he is joking and are afraid to laugh, not sure of his intentions. That makes our time together and the fun we can find so much more important.

Finding silliness and laughter in whatever we do makes our days brighter. We have some things we do every day, singing a goodnight song with the dog is one example. I often tickle him while I am helping him dress or sneak up behind him and give him a quick hug. We share the morning “funny papers” and search out comedies to watch on tv. He still has a good sense of humor and often teases me, another way to lighten the load for both of us. Whatever it is that we can do to add fun to our day takes away some of the burden and keeps us going.

I put body first because it truly is the engine that drives everything else. Exercising, getting our blood flowing throughout our bodies, is key in maintaining a healthy brain to support the other components that make up who we are. As a Carepartner, I know how important working out is for my husband, I don’t always remember that it is just as important for me. A healthy body enables me to provide the support he needs and gives me the energy to continue pursuing my personal interests.

Once you are making sure to be active every day, find ways to stretch your mind. I do crossword puzzles and sudoku as a start, but know that if I want to grow I really need to move beyond those. I try to learn at least one new thing every day because I believe that it stretches my brain. At an age when I often enter a room and wonder why I am there, anything that will strengthen those neural pathways has to be good, right?

Finally, take time every day to exercise your soul whether that is through meditation, prayer, journaling or just spending time with friends. I can only spend so much of my time in the CarePartner role before I begin to feel burned out and lost. I find ways to take a moment in my day and reconnect to myself. My husband naps after lunch and that time has become as important to me as it is for him. That hour, while he is sleeping, gives me the moments I need to rest, reflect and refresh my soul. He needs the sleep, I need the quiet, it works great for both of us.

I took over a spare bedroom in our house. I have a desk with my computer, a futon where I can curl up with a book and my cat, a candle and little else. It is a protected space and when I go in there my husband knows not to bother me. Our house is so small that I can hear if something happens or if he really needs help, otherwise, I can escape and be with my thoughts. This has been a godsend for me as we have been on this journey. While PD is always a presence in our lives, when I am in this room I am in control, and I find refuge in that knowledge.

So, what do I do when I am here? I call it checking in with the world, but in reality it is checking in with me. I start by writing in my journal, venting negative thoughts from the day before or celebrating victories. Once my mind is clear, I visit my blog space and write for you all. It gives me an additional opportunity for contemplation, and I hope, may provide a new or different perspective on what being a CarePartner means for you. Finally, I check on my social media sites and connect with friends and family. Then, I am ready to move on and face the challenges of the world.

It is good having a space that I can escape to every day. I try very hard to make sure that nothing else invades this space, however right now there is a pile of clothing that needs to go to Goodwill and the cat litter box has somehow made it in here. We do live in a small house and necessity sometimes overcomes desires. But, I still have my desk, my window, and my computer, perhaps all I need to find my escape and to help me remember who I really am outside of the challenges of CarePartnering and my husband’s PD.

There is much happening in the world today that is outside of our control and then you add caring for someone with Parkinson’s Disease to the mix. While you can try to make life easier for your partner, they are still going to have “bad days” where the symptoms are more prominent or they have other aches and pains that won’t go away. You will also face situations in your daily living such as buttons that don’t work, delayed medical appointments or any number of other frustrations that can get in your way. When things get crazy and it feels like the only direction you are going is backwards, take a breath, pat yourself on the back just because, remember where you are headed and start again.

So much of what is happening with my husband is out of our control. We can exercise to slow down the progression of his illness, but he is still going to move slower and will have tremors for the rest of his life. His smile comes and goes based on what time of the day it is and he struggles to communicate when we are in a stressful environment. Our plans have to include times for napping and we always know that they may need to change based on how things are going an any particular day.

Setbacks will happen but then there will also be times when things get better. We can ride this wave together, looking for the highs as well as the lows, with the knowledge that it will settle out and we will make it through.

I often find myself worrying more about my husband’s well being than my own. After all, I am his primary CarePartner and that carries a lot of responsibility. So, I plan meals and try make sure that he eats on a regular schedule. I watch what he eats to see that he gets his recommended allowance of fruits and vegetables and work to steer him away from unhealthy snack choices. And yes, I sneak extra veggies in whenever I can. But then, I catch myself eating whatever leftovers I find in the fridge.

We both still make our own breakfasts, which works well for us. We plan our other meals together and they are much like the things we both grew up with during the “meat and potatoes” days. We don’t necessarily like the same foods and his tastes tend to run to less healthy options. I can get by on soup or a salad and fruit for lunch, he needs a sandwich. Dinner usually is an entrée and 2 sides, we are still stuck on the food pyramid. Unfortunately, Michelle Obama’s healthy plate hasn’t made it to our house yet.

The Brian Grant Foundation recommends a plant based, whole food diet. They provide great nutritional advice including recipes at https://briangrant.org/nutrition/ for people with Parkinson’s. I know that their suggestions would be healthier for both of us, yet it would represent a complete change in how we shop, how we cook and what we eat. Then comes the challenge of getting him to eat it, we are still fighting the kale battle.

There used to be a movement to “visualize” everything you wanted so you could make it come true. We were told to surround ourselves with pictures of things we wanted or wanted to achieve and we could get them. I believe that there is some validity to this idea. If we keep a positive mindset and focus on what we want life to be like, we can impact how we approach things and our perception of the challenges we may face. Living with someone with PD is going to change your life. Accept that change and look for the “silver lining” to the cloud. Hold tight to what you want from your new life and you will find ways to make it happen.

Our world is in turmoil right now. We are facing a battle that we don’t understand nor do we see a clear pathway through. What I have decided to do is to remember the concept of letting go of things I cannot control. I absolutely can’t stop what is happening outside my home, but I can work to minimize the impact it has on our daily lives. So, even in this time of extreme craziness, I can do my best to make our home a calm and loving space. I can try to maintain a sense of normality even when there is none outside our doors. I can provide stability within these walls, with the hope that it will soon return to the world beyond.

What does this mean when you are living with someone with Parkinson’s Disease? There are the obvious things like attending medical appointments, but what about making yourself familiar with their hobbies so that when they can’t do them on their own, you can help them continue doing things they enjoy? What about being part of their exercise program, whether as an exercise buddy or a volunteer for their trainer, with the additional bonus of improved health for you as well?

And what about your life outside of PD? My husband is currently paying all of our bills. I am becoming more active in that process because at some point, he is not going to be able to continue and I need to understand what is happening. I wish I had been more attentive to the things he did outside the house because, now that he can no longer do them, it has fallen to me and I don’t know when or what needs to be done. I know he gets frustrated and feels bad when I have to constantly ask him how to do chores that were once within his domain.

I need to fully understand what PD is doing to him and what he does to alleviate the symptoms. I need to know enough about his diagnosis so that when something happens that is not PD related, I recognize it and can help him figure it out. Because, unfortunately, someday I may be figuring all of this out by myself and I want to be able to make appropriate decisions with knowledge and love. I want to make sure that our journey, no matter how difficult it becomes, is always filled with the understanding that we did everything we could do to make it through together.

Wouldn’t it be nice if whenever you woke up in the morning there was a message saying today will be just fine or today is going to really be tough? Then, we could decide before getting out of bed which persona to embrace in our daily battle with PD, calm and loving partner or fierce warrior caregiver. (Personally, I find that I am most often having to mix the two.)

We have those days when everything is going right. My husband’s symptoms are under control, the sun is shining on us and life is going well. Then, the next day, neither one of us wants to get out of bed. We are tired, achy and the thought of facing the world is just too much. We are learning that those are the mornings when we most need to cuddle. I roll over into his arms and we may drift back to sleep for a few minutes or maybe we’ll talk about what the day has in store for us. Connecting for just a few minutes and sharing in the challenges we are feeling gives us the strength to get up and get going in our daily battle with Parkinson’s.

The biggest thing to remember is that whether you are celebrating or just surviving, you are doing it side by side with your partner. The battle should never be between the two of you but should always be shared as you follow the pathway you are forging through PD.

We recently celebrated my birthday. There was a time when we would have had a big family get together and a cake from a local bakery to top it off. It was a lot of work for my husband who had to plan it all and for me, as we got the house ready and prepared the food. While it is always fun to celebrate together, lately it seems like it might be more work than it is worth as we both get older and less capable of doing it all.

This year outside influences kept our celebration small. I convinced my husband to help me bake and frost a cake. We picked up our dinner from a local restaurant. Then, we sat down and enjoyed our meal with a glass of wine before watching some of our favorite tv programs. It was a quiet evening, yet very relaxing. I think that we may be setting a new norm for future events thanks to forces beyond our control.

I have always enjoyed sharing celebrations with loved ones but at what cost? Sometimes we try too hard to keep things as they have been and add stress to an already challenging time. I have found that it is important to take an honest look at what we do remembering that my husband’s diagnosis has brought about some changes in our lives and our capabilities. What can we actually do that won’t overcome either of us? I am learning that it may be better to plan simple activities rather than to try and do everything we have always done, just because we have always done them. Instead, I will be thankful that we have another celebration to share and find ways to make it enjoyable for both of us as we create new memories of loving times.