The Parkinson’s Foundation recently hosted a two-day webinar about the role good nutrition can play in supporting my husband’s well-being and potentially slowing the progression of his symptoms. The speakers covered the science behind healthy eating and gave us tips, including a recipe for a healthy salad option. They concluded with a panel of two people with PD and one partner talking about how changes in diet had impacted their lives and ways they were implementing these healthy options. I thought it was great.

After day one, I turned to my husband and said, “so, do you think we could try to incorporate fish into our diet one day a week?” When he responded with “as long as you don’t expect me to eat it”, I knew we were in for some interesting meal challenges ahead. Much of the information shared was PD specific, but some was more general and would be beneficial to everyone. Both of my parents developed neurological issues as they aged, I need to be looking out for myself as well as my partner.

On day two we heard from a dietitian and she demonstrated a very healthy salad recipe made with couscous that looked delicious to me. After the session was over, I again turned to my loving husband and said, “a simple change could be to have salads every night with dinner.” His smirk said it all.

We are going to start incorporating some changes to our dinner plans but it is going to take discussion, negotiation, and careful planning. My husband did agree to try the fish, but it has to be something mild and small portions. We are going to look at adding some salad alternatives, maybe not every night, but at least 3-4 times a week. My hope is that when we start to feel better, we will want to do more and eventually we will be eating those healthy foods at every meal, not just dinner.

If you are interested in learning more about nutrition, visit the Parkinson’s Foundation website page on Diet and Nutrition.

We are registered for a two-day class on nutrition and PD which, I hope, will give us some new insights on how we should be eating to prolong our lives together. It will be interesting to learn whether any of the foods we are currently eating are okay or if we should completely rethink our meals.

My husband is a meat and potatoes guy, liking his beef particularly well. I like to throw in a salad and a few veggies and even make a stir fry from time to time. We don’t eat fish because he doesn’t like it and we don’t eat lamb or veal because I don’t, otherwise just about everything is on the table at some time. Many of our meals are relics of the last century, the things we grew up with in the 50’s and 60’s. After all, that’s when we learned about nutrition and started to cook.

So, when I hear about whole foods, multi-grains, and amino acids, my eyes start to glaze over. I don’t necessarily need to fully understand the workings of our guts, I just need to know what we should be putting into them to make life better and easier for both of us. What would truly help would be for someone to present me with a shopping list, a menu plan, and a husband who is willing to eat what is put in front of him. Thankfully, my husband is pretty good at trying new things; if I could just figure out how to disguise Salmon as Prime Rib?  

I belong to a couple of Parkinson’s support groups and value the information and the connections they provide. Before we found them, I often felt isolated and even lost in the challenges we faced. Even more, we have discovered new friends who have been brought together by this diagnosis. These are people who truly understand the journey and who can accept and relate to our stories.

There is the monthly group that started it all, introducing us to so many wonderful people. I remember crying after our first meeting. There is the breakfast group that started with two couples and grew to become about twenty people meeting monthly. Partners and PWPs getting together to share food and talk about life including their struggles and victories. The smaller things that came from these, the holiday parties, happy hour get-togethers, the quiet walks with just a few of us, I appreciate it all so much.

I would never say that I am thankful that my husband has Parkinson’s, it is a dreadful illness. However, I do have to recognize that thanks to his diagnosis, we have meant so many amazing people. Our lives have become fuller and richer because of the opportunities being a part of this community brings. We are truly no longer alone.

We are having a terrific day, my husband’s meds are working well and life is calm then BAM there it goes. Something happens out of left field, maybe the dog throws up or the tree in our backyard falls down or we learn that we are in a lockdown due to a worldwide pandemic, whatever it is things go crazy in an instant. Stress levels skyrocket and everything goes out of control.

How can I maintain a constant state of calm when crazy is just around the corner? How can I stop myself from reacting when things do happen until my brain has a chance to join me?

I have found that the best technique for self-calming is to breathe. Whenever I got upset as a child, I was told to count to 10. This is still a fine intervention for me, but I have added taking in a deep breath while counting. Then I let it out while counting to 10 again. A few slow, deep breaths help me regain control of my brain and the clarity to act purposefully as I move forward. I may still react in the wrong way but at least I am thinking about what I am doing. Remember, the crazy will always be there, make sure your brain is too.

I think we all try to do more than we can and it often leads to failure or defeat. And then, I beat myself up for not being more capable asking “why can’t I do it all”? The better question might be “why should I do it all”?

When we started on this PD journey more than a decade ago, my husband was still taking care of the yard and helping with the chores including cooking and cleaning; he and I were partners in all it took to run our household. As his disease progressed, it became more and more difficult for him to do many of the tasks and so I started filling in the blanks. He shouldn’t be on ladders so I cleaned the gutters. His dexterity diminished so I became the one who did many of the smaller home repairs. Yard work became too challenging and I found myself cutting, watering and maintaining our lawns. I didn’t want him to stress about the things not being done so I tried to do them all before he noticed. It was wearing me out.

In my desire to be the perfect CarePartner, I put so much on myself that I wasn’t here for him because I was too busy or too tired. When I accepted that I am not able to do the work of two people and be responsive to the needs of either of us, I was able to drill down to the true value of being a CarePartner. I am learning to prioritize tasks and ask for help when it is needed and I am looking first to what is important, not simply what is there. The lawns may be a bit shaggy but if my husband has a smile on his face, then that is what matters most.

As I sit down to write about flexibility, certain thoughts come to me like physical activity and open mindedness, adaptability and willingness to try new things, compassion and understanding, acceptance and positive focus. What exactly does it mean to be flexible in body and mind and what will it take for me to get there?

There are basics, the better my body feels, the better my mind functions. If I am stiff and achy, I get caught up in my own stuff and am not fully here for my husband. If, on the other hand, I have a regular exercise program I feel healthier and am stronger when it is needed. Yoga is great for relaxing and stretching but I also find that I need some aerobic and light weight lifting somewhere in the week to keep my body ready for any upcoming challenges.

Flexibility in the mind is a much more challenging concept for me. It started with my acceptance of his diagnosis and the willingness to try new things as his capabilities change. I have to be ready to understand that I may need to overlook certain things to see beyond the disease to find the man I love. I work to remain open to finding new and constructive ways to support him as he struggles through the progression of his symptoms without letting my own feelings get in the way.

There will be changes including some losses along the way, but I will find and maintain flexibility so I can adapt to whatever life brings as we lovingly continue our journey in positive directions.

What would that look like? Something, anything, unexpected and kind. Maybe cooking their favorite meal or a special treat? Maybe taking a walk or playing a game? Maybe you could write a love note they will find? Whatever you decide to do for them, make sure that it is something different from daily living activities, then do it and enjoy the reaction.

Surprising my husband with anything is difficult because he is with me all the time. I have learned that buying things doesn’t work because he is very particular about his clothing and shoes. He does not like spontaneous gestures. So instead, I will come up behind him and rub his shoulders for him or catch him when he is dressing and scratch his back. I will slip my hand into his while we are walking or sit next to him and cuddle when he doesn’t expect it. When he seems to be having a particularly difficult time, I may catch hold of him and give a kiss just to break the tension and give a fresh start.

Those little kindnesses are good for me too. They remind me to think beyond the daily chores and remember to inject fun into our lives. Reconnecting with our love always lightens my heart and makes my tasks go so much better. It never hurts for me to revisit the “why” that keeps me getting out of bed each day and continuing on this journey.

Life as a CarePartner can be tough. There are times when it feels like I’m standing on the railroad tracks trying to talk a train into stopping before it barrels over me. I have learned that if I go ahead and finish what must be done, I can get out of the way before the crash so we can safely meet up at the station later. It is not always easy to do, but usually the best decision if I want to get through it and move forward.

Anger and frustration are strong emotions and can easily overwhelm me, especially with the additional stressor in my life of living with someone who has a chronic illness. The freight train in our lives can be the situation or it can actually be my state of mind when I am faced with tough times. If I take a moment to consider what is happening, I can usually find a way to derail those negative feelings.

We had a disagreement the other evening over whether we needed to water the lawn or not. I wanted to wait until morning but my husband wanted to get it done right then. I compromised and did what I could, even though I was already really tired. In other words, I saw the train coming so I did the work and got out of the way before it hit. Then, when we went to bed, I brought it up and we were able to have a conversation about what we thought next time needed to look like. It was a positive exchange at a safe time and place, and we were both able to let it go.

We watched a program last night where one of the characters was taking a 20 day “no complaining” challenge. His premise was that by not complaining he would instead find gratitude and greater happiness. While it is important to recognize all feelings you have, if there is a way to let complaints go and instead focus on gratitude it makes sense that you, and those around you, will be happier.

It is surprising how often I catch myself complaining during a normal day. Or, better still, how often I sense a terseness in my interactions with others. I hear words coming out of my mouth that I don’t recall thinking and yet there they are. I realize that I am allowing my negative reaction to express itself without regard for the feelings of others. I am being unkind, and I don’t like it!

If I can train myself to stop and take a breath before reacting, I can take the time to look for something to be grateful for. It may be the knowledge that I am in a difficult situation or don’t want to do this again, but if I try I know I can find a positive view. Making a mistake, having a disagreement, getting frustrated about nothing- all of these things can be constructive if I don’t let negativity take over and instead focus on personal growth and learning. Today I will stop complaining and focus on gratitude in all my interactions to find the positive side and see how much I can learn.

When you are caring for someone with a chronic illness, it is important to remember that we all have good and bad days. It is okay that sometimes you wake up and aren’t ready to face another day of caregiving. What is not okay is for you to let those feelings overwhelm you so that you can’t let them go and move on with your day. Find the motivation, even if it is just for the next hour, and get moving. Get up, get through breakfast and then set your goal for lunch. Keep setting small goals and before you know it you have made it through the entire day. Take a moment to be grateful for your success and remember, tomorrow will bring a new and hopefully better day.

I am having one of those days today, my second or third this week. It has been a time of multiple stressors that really shouldn’t have been. Little things that are happening and that are causing major upset. So, today I am going to try to let it all go and take a day to do something fun to see if I, we, can kick this lethargy that has set in. I have had enough and now it is time to move forward with a refreshed spirit. I am tired of feeling tired, today I am going to take some R&R and get beyond it.