We are in the middle of winter and my husband is cold all the time, no matter the setting on the thermostat. The shorter days bring on bouts of late afternoon “sundowners”, which for him translates to fatigue and chills, and increase his risk for Parkinson’s Disease related anxiety or depression. We both miss being able to be outside due to the weather and see a definite decrease in our physical activity. January and February are difficult months for us.

We fight these seasonal challenges with supplemental Vitamin D, taking advantage of any sunny days to bundle up and go outside regardless of the temperature and making use of our fireplace to chase away those late afternoon chills. We try to keep to our regular schedule, no extra naps just because it’s dark, and may go to the mall for a walk when we can’t be outside. We both have special lamps on our desks that have “natural light” and sit facing windows to take advantage of any sunlight that might filter through during the day.

We often travel mid-winter, taking off for a tropical location for just a few days. Travel brings a whole new set of challenges for someone with PD, but we find it is worth the struggle. My husband’s winter challenges thanks to PD have given us the excuse to visit several Hawaiian Islands and Las Vegas more than once, perhaps there is a positive side to this disease after all.

For more information about sundowners syndrome and PD see WHAT IS SUNDOWNING, WHAT CAUSES IT AND HOW DOES IT IMPACT THE CAREGIVER? · Parkinson’s Resource Organization (parkinsonsresource.org); for PD and Vitamin D deficiency see Low Vitamin D Levels Seen in Parkinson’s Patients (webmd.com); and to learn about the role Vitamin D plays in winter Everything You Need to Know about Vitamin D in the Winter – Fitbit Blog.

There is no doubt that I can do most things faster than my husband and with less effort. It makes sense because I don’t have the constant battles with my body to get my arms and legs to do what my brain is telling them to do. I can load the dishwasher, fold laundry, even vacuum the floors and finish faster so we can move on to the rest of our day. Whenever I do his chores, I take away his contributions to our home. I remove opportunities for him to show that he can still be an active and responsible participant in our daily lives. It may be easier for me in the moment, but it is not better for him in the long run.

We have contractors working on our house this week. I have tried not to be the primary contact, even shutting myself up in my office for periods of time so they would have to interact with my husband. The only thing he hasn’t been able to handle has been when they need checks written. It has been good for me, to not have to deal with them all the time, and good for him to be able to practice interacting with an adult other than me.

My husband is a very capable person even with his diagnosis of Parkinson’s Disease. He may function a little slower, but he can still function if he is given the space and time. I know this is not true for everyone with the diagnosis, but it is our reality and I need to respect where we are and encourage him. There may come a time when I have to step up and do more, for now I need to be mindful of sharing the journey and the load, and let him deal with the carpenters.  

New or unexpected challenges pop up all the time at our house and, usually, I am the one who gets to deal with them. It may be a leaking sink or a spilled trash can or it may be something my husband is trying to do that requires some additional assistance. Whatever it is, this new thing disrupts my schedule and can throw me off for the rest of the day. Not that I have that much of a schedule, but I do try to keep things running smoothly at home. This is not always possible, so I am learning to prioritize my tasks. When faced with something new or unexpected, I decide if it is critical, especially as it relates to my husband, or something minor that can wait. Then, I choose to act immediately or let it go.

There are times when I simply don’t recognize or wish to acknowledge the challenge. I have a lot on my plate at any given time, anything extra can be overwhelming so I may choose to ignore it. I worked for someone once who taught me that anything that wasn’t in writing didn’t exist, I like to say that anything I don’t already know about doesn’t exist. Occasionally that works even though it means that I will have to deal with the situation later. The unexpected becomes something I know about and can work it into my schedule at a time when I will be in a better mindset for a new task.

Life is unpredictable, Parkinson’s Disease is also unpredictable. I am a person who likes to feel in control of my life, having a partner with PD is teaching me that it is not possible. What I can control is this moment and my reactions to the things that are happening now. If I can stay grounded in the present, I am ready for the unforeseen and have an opportunity to make a mindful choice before acting. I can try to tackle the new challenge or I can ignore it, but I will be doing it consciously with the full knowledge that whatever it is, I will find a way to get through.   

The past year has made me feel like a pincushion. I have had 3 Covid shots, 2 shingles shots, a pneumonia shot and a flu shot in addition to having blood drawn twice which, even though it isn’t a shot, involves poking me with a sharp needle. I did all of this at the recommendation of my doctor, to protect my health, but also because I know that I have a responsibility to protect my husband from transmissible diseases. I could survive the infections, but could he? Googling the risks of influenza for someone with Parkinson’s Disease took me in a totally unexpected direction, looking back at whether he had once the flu rather than what it might do to him now.

A study conducted in Denmark simply asked the question “Is influenza or other infection associated with Parkinson disease?” This question has been around since the 1918 flu epidemic and a later surge in people being diagnosed with Parkinson’s Disease. The researchers looked at health records for 60,000 people, 10,000 of them with the Parkinson’s diagnosis and the rest as a control group. They found that the people who were diagnosed with PD had a greater rate of prior flu infections. The study was not definitive, but does suggest a link between the two illnesses.

So, this brings me back to my thoughts on being a pincushion. Perhaps all of those pricks are helpful in that they keep me from bringing a disease home to my husband but they also might help me avoid the diagnosis myself. Who would have thought that a bout of the flu could potentially have such a drastic outcome years later? There is still so much we don’t know about this disease, I will get all my shots so I can be as proactive as possible in protecting us both.

 To see the original study visit Long-term Risk of Parkinson Disease Following Influenza and Other Infections | Geriatrics | JAMA Neurology | JAMA Network or for a brief synopsis check out this article from the New York Times Can the Flu Contribute to Parkinson’s Disease? – The New York Times (nytimes.com).

Our local Parkinson’s Disease community has a couple of CarePartner specific support groups that have been very helpful in my journey. They also provide training on caring for your Person with Parkinson’s and offer grants for respite care. When I felt that I still needed a little more support, I worked with a friend to create a monthly breakfast group for PD CarePartners. I even learned recently about a local organization that provides holiday gift bags for everyone who cares for someone with a chronic illness, regardless of the diagnosis. They understand the difficulties we face and how valuable our work is to the community as a whole. It feels so good to know that there are people out there who acknowledge and recognize the role we play.

I also take advantage of some national resources. All of our major Parkinson’s related foundations are now offering CarePartner training and support. One of my favorites is an on-line monthly meeting led by Connie Carpenter Phinney, a long-time CarePartner herself, and can be accessed through the Davis Phinney Foundation website. It is held the first Tuesday of every month and I can join with CPs from around the world to talk about things that we are all facing.

My husband’s welfare depends on my welfare. I need to make sure that I am taking good care of me so I can take good care of him. Accepting help by utilizing all available resources is essential as I strive to be the best CarePartner and the best person I can for both of our sakes.

To find more resources check out the Parkinson’s Foundation, American Parkinson’s Disease Association, Davis Phinney Foundation, and your local Area Agency on Aging.

I have developed many coping mechanisms that help me deal with the stresses of my day. I use deep breathing, journaling, exercising, and yes, a daily glass of wine. None of these are necessarily bad for me as long as I keep them in moderation. There are, however, some other things that I do that I am not so sure about. For example, there’s the video games.

My husband naps every afternoon. He rests better if I am close by so I used to sit in the same room and read. Then, I discovered “Sherlock” the video game. It allows me to escape into a completely different world where I am constantly beating challenges and earning rewards. It was free to download and I could play it for hours if I didn’t run out of energy (the character in the game, not me). I have even caught myself telling my husband to go back to sleep for a while longer when I am not ready to stop playing. I am definitely addicted to this game.

I enjoy having a daily distraction, but I think there are healthier options than sitting and staring at a screen. Perhaps, though, it is okay for me to zone out for that hour as long as I put it down and walk away when the time is up. My coping mechanisms are good as long as they are done mindfully, in moderation and I recognize the risks. And I must always remember that the mechanisms cannot become the focus but instead use them as supportive tools that help me get through the day.

My journey is not my husband’s journey, but they do intermingle. I cannot measure my successes based on what he does but rather on what I am able to do in my day. I can take credit for helping him when appropriate, but more importantly I need to look to my life and obligations to acknowledge the good things that I accomplish every day. I think that if I stop and take the time, I will find that I have a lot of little victories that I don’t even realize are happening.

A lot of the things I do are automatic, cooking, cleaning, laundry, but still they are accomplishments that should be acknowledged and, yes, celebrated. For example, I worked in the garage tidying up yesterday, I spent 2 hours volunteering at the museum, I prepared our lunch and dinner meals and took the dog outside to avoid accidents in the house. These are all things I do in addition to my duties as a CarePartner. While these tasks may seem trivial, they are a part of the load I carry and wouldn’t be done otherwise.

My life is busier thanks to my husband’s diagnosis and yet I am still able to take care of the basics and more, and I need to know that it is okay for me to feel pride in my work. I finished writing this blog, yay! Now it’s time for me to move on to the next accomplishment of my day.

I have been thinking about the past a lot lately, remembering the things we did together before PD and even before his symptoms got so bad. I think about traveling to unique destinations like the island of Moorea or our more recent trip to the United Kingdom. I think about local activities, participating in 5k walks and going hiking on our own in the gorge. Those trips were good and bring smiles to my heart, but even more than that I think about the day-to-day issues we have overcome and find real peace and thankfulness.

It has become the little things that really matter. Discovering the fun of trekking poles that allow us to continue our walking practice. Or maybe it’s getting dressed together and helping each other with the minor things like zippers or socks. Making the bed as a team, working around the house, sharing a good book, enjoying each other’s company no matter the challenges Parkinson’s brings to our lives.

Memories are a great way for me to find my positive path but living is how I maintain it. Remembering that my husband is doing his very best and that, when things go haywire, it is the disease and not him. Accepting that we both are aging and will have bad days but that they will pass. Knowing that whenever PD knocks us down, we will get back up together and keep moving forward, that’s the positive core that keeps me going each and every day.

I never have been one to meditate, I find it really difficult to clear my mind and focus on relaxation. The mindfulness practices that I attempted in the past bored me and left me feeling like I was failing because I just couldn’t buy into them. However, the unpredictable nature of my husband’s illness has shown me the value of connecting with each and every moment because I never know what the next moment is going to bring.

Life is interesting for us these days. Yesterday, for example, we had just come in from working outside and were preparing to have a small glass of wine to honor the beauty of the day. All seemed fine as my husband reached for the glasses. His tremor kicked in, a glass fell to the floor and shattered. Before his diagnosis, I would have panicked, now I just look at him and ask him to step away while I clean it up. How does this equate to living in the moment? I was aware of his actions, couldn’t stop them but they didn’t throw me off, and I was able to respond in a calm and even manner.  

Much of this is thanks to the benefit of doing PD exercises with my husband. Components of the programs we participate in encourage us to always be in touch with our bodies. Thanks to his diagnosis, his brain must actively communicate with his arms and legs if he wants them to respond. The physical activity and awareness keeps me present in the moment and provides a greater connection with the world around me. Perhaps it is a version of mindfulness, but whatever it is, I am thankful that I am able to be here and be calm when PD is doing whatever it can to upset our days.

I am regularly being asked to do things that I didn’t expect to do, things to support my husband as his symptoms progress. Sometimes it is fun, taking on a new challenge, other times it is not so fun as I accept tasks that are not terribly pleasant but that must be done, nonetheless. I do them out of love for my husband but need to remember there are limits to what I should be doing and understand when it is time for me to say no, even to him.

Talking through the changing roles we play helps me express my feelings. There are things that I don’t mind doing and for which there are no reasonable alternatives. Some of the things my husband’s disease will ask of me can be done better by someone else and we are open to that when the time comes. Right now, there are tools out there that can help him maintain his independence and I need for him to be open to discuss and try those options whether it be adaptive utensils or grab bars for the bathroom.

Acknowledging that my feelings matter as much as his is key for me as I try to navigate my place in our journey. I need to be able to communicate with him about what I find challenging to alleviate misunderstandings. I have to be able to say “I need this for me” whatever it is and not feel guilty about it. We can look for better solutions together if we are willing to listen fully to each other and consider how to meet both our needs. I will still have tasks that I don’t like, but at least I will know that he understands and that I am respected for doing them anyway.