My husband doesn’t stumble on purpose, he doesn’t shake because he wants to, and he certainly doesn’t enjoy taking medication six times a day. He didn’t ask for the rigidity or the challenges he faces when trying to communicate. He wouldn’t have given up driving or the chores he did around our home unless it was absolutely necessary. He did not ask to be diagnosed with Parkinson’s Disease and I cannot blame him for the changes it brings to our lives.

Yes, I do get frustrated at times when I am waiting for him to do something or just move to get out of my way. Yes, unkind and even harsh words come out of my mouth and I immediately regret them because I know he can’t help being slow or stiff. It is easy to direct my anger at the person standing in front of me rather than the disease that causes his neurons to misfire, but it isn’t fair.

Recognizing the challenges that this diagnosis creates without placing blame includes understanding and accepting that my life is going to change. I can make choices about how much it will change, but must also acknowledge that PD is a shared journey. I loved my husband before his diagnosis and that is the one thing that won’t change. Accepting new challenges doesn’t mean I am giving up on my life, it simply means I am opening my heart to share a different pathway that can be just as fulfilling if I let it.

Our plan for retirement, like so many others, was to travel the world. We looked forward to exploring new locations and learning about other cultures. Then Parkinson’s hijacked our journey and the places we now explore are medical offices, the culture we are learning is that of the chronically ill and the PD community. Not really what we expected.

I was disappointed for a while but then realized that I don’t enjoy long flights and the jet lag that accompanies them. Since the pandemic struck, travel has been unsafe or unavailable to us anyway. So, my husband and I took a look around and decided that it might make more sense to put the money we would have spent travelling into more realistic dreams like upgrading our home. Since we aren’t able to travel to luxurious places, why not try to bring some of that into our daily lives?

Dreams are important but they need to be realistic. My life changed the day my husband was diagnosed with Parkinson’s Disease. Our reality shifted and my dreams have to shift and adapt to a new life. I am finding, however, that it doesn’t have to be bad. Maybe I can’t fly to Europe and take that ten-day cruise, instead I am going to have a beautiful new bath with a barrier free shower that I can enjoy every day. And, when I want to see those European sights, I can view them on my smart tv from the comfort of my living room. It’s the next best thing to being there and I won’t be exhausted by the trip. I may miss some components of the experience, but it won’t stop me from enjoying the journey as long as my husband is here to share it with me.

As my husband’s illness progresses, his needs change, and my responses need to change too. When he was first diagnosed, he was working, driving, taking care of his daily needs without my help or interference. My only responsibility was to accompany him to his appointments. We both were aware of the illness, especially the tremors, but it wasn’t really impacting our lives. He was in early PD or stage 1 where his symptoms were mild and he was able to function well without assistance.

His tremors started on the left side but after a couple of years we noticed they were moving into his face and then his right side. His smile disappeared and his body became rigid. He was definitely in stage 2, still considered early PD, when my CarePartner duties began to increase. He needed some assistance dressing, speech and driving became more challenging. Not long after this he decided to stop working and most of the chores he had been doing around the house suddenly became my chores including yard and home maintenance. He chose to stop driving and didn’t leave the house unaccompanied. We were about 8 years into his diagnosis when he reached the mid-stage of PD, also referred to as Stage 3, where challenges are considered moderate.

His tremor and rigidity were debilitating and defined my duties as CarePartner. I found myself having to help him dress, cut his food, basically any activities that required small movements were beyond him. His speech had become soft and he struggled to find the right words so I often stepped in to help him communicate. I stopped working to provide 24/7 care and PD was the epicenter of our daily lives. It was at this point that I finally convinced him to discuss treatment options with his Neurologist who recommended Deep Brain Stimulation. While he will speak of the challenges having the surgery brought, I am thankful for the relief it brought to my role. We went from borderline stage 4, or advanced PD, to a level more in line with early stage 3, mild to moderate symptomology. He is back doing many of the things he was unable to do pre-surgery and that has lightened my load tremendously.

None of our medical team focus on the stage my husband is in, we simply discuss where we are and what we need to do better. I am available to him for whatever support he needs, but recognize that my role as CarePartner has its limits too. If, and when, he moves into the more severe stages of this illness we will have to look for additional help. I need to be able to still be his loving Partner, when the Care component becomes too much for me to handle.

More information on identifying the stages of PD can be found at 5 Stages of Parkinson‘s Disease (healthline.com) and MDS-Unified Parkinson’s Disease Rating Scale (MDS-UPDRS) (movementdisorders.org).

We work out with a coach who has us repeat positive affirmations during every session. We say things like “I am amazing” and then she explains that we are amazing because we keep showing up to class even on days when we are tired or unmotivated. Tying the positive affirmations to our actions gives us reasons to believe what we are saying and adds meaning to the words. 

This same principal comes into play when I am struggling with my role as CarePartner. There are days when I feel like I do nothing right and that the tasks are never-ending. I could stop then to tell myself how wonderful I am, but it would be a meaningless exercise for me. Instead, I take a moment, take a deep breath, and remind myself that I am resilient. I rejoice in the fact that, although I am having a tough day, I am still standing and trying to move forward. I commend myself for having patience and determination. My positive affirmation is customized based on where I am in that moment which gives it meaning.

False affirmations are just like false praise and, while they may distract me, they will not reenergize me for the day ahead. Acknowledging the real strengths I possess helps me develop and maintain my positive mindset. I am not always fabulous or creative, but I truly am amazing because I am open to all the challenges being a CarePartner for someone with Parkinson’s Disease brings to my life.

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.