Parkinson’s Disease steals much from us and the most difficult to overcome is the loss of facial expressions. This symptom, called hypomimia, is more commonly known as facial masking and interferes with the person’s ability to control the muscles in their face resulting in a somewhat frozen demeanor. The Person with Parkinson’s finds it difficult to communicate with others thereby increasing isolation and the risk of depression. It was something I first experienced with my father thirty years ago, and more recently with my husband.

In Dad’s case, his facial masking was one of the first symptoms to show. His medical doctor actually mentioned that he should have recognized it years before. As his illness progressed, he withdrew and hid behind this mask. Without facial expressions, we had no idea what was going on in his mind. Occasionally he would get a few words out so we could see glimpses of the man he used to be and know he was still in there somewhere.

My husband lost his facial control slowly until one day when I realized he no longer smiled. He had such a beautiful smile; it was one of the things that first attracted me to him. The only movement present in his Parkinson’s face was the tremor that took over during off times with medications. In addition to losing his smile, his lack of expression made it increasingly difficult for us to communicate. He has a quirky sense of humor that can come off wrong when not accompanied by appropriate facial gestures. His disease put a wall around him and I was having a really hard time breaking through. I was so surprised when he woke up from Deep Brain Stimulation surgery and smiled for the first time in years. The surgery brought back his smile and all his other facial expressions allowing us to break through that PD wall and reconnect.  

For more information about this see Facial Masking | Parkinson’s Foundation.

If I look for my husband’s strengths rather than his deficits, my outlook shifts. I like to think of it as his four “D”s- Dedication, Determination, Discipline and Drive. His dedication and love for family and friends, his determination to live each day to the fullest, his discipline to do what needs to be done regardless of how he feels in the moment and the drive to fight whatever new adversity PD brings. One great example is how he gets up every day and exercises. I often hear him say “not looking forward to this class today”, yet he does it anyway because he knows it’s the only thing proven to slow the progression of his disease.

Carrying this same philosophy to my role of CarePartner, I find that I am doing more things right than I realize. I exercise with him so that I can be strong enough to help him should the time come when he is incapacitated. I provide him with healthy meals and encourage him to stay hydrated. We talk about current events and discuss books we have both read. I play games with him to support his mental abilities. I arrange social activities to expand our world. I take care of myself in these same ways, eating healthy foods and staying active both physically and mentally.

I try not to look at what might have been because that is a road to nowhere. Working from a strengths-based philosophy enables me to see the positive in each and every day. I am fitter than ever before thanks to our exercise programs, including boxing which I love and never would have tried otherwise. I have new friends and community connections that I never imagined. Yes, PD is progressive, and yes, my work load is increasing daily, but I have the skills I need and will develop new ones as needs arise. We can do this; I can do this as long as we stay focused on our strengths and don’t let our weaknesses win out.

It happened again, I lost control over an unimportant situation and grumped at my husband. I know it was wrong, but it happened anyway. It’s difficult always trying to appear calm, especially when I find myself stuffing emotions like anger and frustration. The pressure builds inside me until it feels like an explosion is eminent. If I’m lucky, I recognize what is happening and step away before things blow up. Unfortunately, I am not always lucky and ugly words and feelings burst forth. This release brings a brief respite before I am overwhelmed with feelings of guilt because I know that the person most impacted by my outburst, my husband, is not the one responsible. I am the only one responsible for losing control of my emotions in a stressful moment and I can do better. 

I have participated in stress reduction training and regularly practice yoga yet still things will happen that are going to upset me. It is not possible to go through life without hitting bumps along the way, I just need to make sure that the bumps don’t become mountains. I have an elderly dog who is needing additional care, I live in an older home with things that break, I have a life that brings challenges of its own and my husband has Parkinson’s Disease. I am human, so of course I am going to run into things that make me frustrated or angry. I know how I should react when those feelings come up, I just need to remember to use that knowledge.

Whenever I first feel things going haywire, I need to stop and take a breath. If possible, I need to step away for a moment to determine exactly what is happening and find a healthy way to address the issue. If I can verbalize what I am feeling, perhaps using a nonsensical word in place of the angry ones, it breaks the tension. Once the immediate situation is dealt with, I need to find a different activity to take my mind off whatever was causing the stress in the first place. Finding a task that takes all of my focus clears my mind and allows me to reconnect with my calmer self. I can revisit what happened later and look for a better resolution than losing control which, I know from experience, only makes things worse.

My husband’s cognitive abilities are tested at least once a year during medical appointments. The tests ask him if he knows what day it is, the date and year, who the president is, to remember a series of words and he always passes because he knows what to expect. However, I am thinking that it might be a good idea for us to talk about these things more because since we both retired the actual day of the week and date have become somewhat irrelevant. We check our calendar every morning for appointments and, if there are none, we move on to enjoy another day just like all the others.

This is not just for him, but also for me. My cognitive abilities need to be exercised so that I can protect my brain as I am getting older too. I am at all his appointments with him and often catch myself participating quietly in the testing. I don’t always do so great, especially when they ask him to count back from 100 in 7s. It will not be good if I develop cognitive challenges, who will care for us then?

We already have times when we talk about current events in the world, I think that it is time for us to add some talk about the basics, the day of the week and the date of the month. It never hurts to add to the dialogue and will serve to work our brains as we recall the facts and strengthen the internal mechanisms that allow us to verbalize them. We both need a strong foundation so we can have a healthy future together.

My husband and I were older when we met and married. We both had histories of failed relationships and carefully considered what we each wanted prior to making a commitment. We discussed our views of what a good relationship could be as talked about individual needs and wants. We envisioned the three different components of a good relationship, emotional, intellectual and physical, as a three-legged stool. Each component needs to be nurtured equally or the relationship topples. We continued our conversations on a regular basis after our marriage to ensure that we stayed on track and our stool was balanced, but we all know what Parkinson’s Disease does to balance, right?

My husband’s illness first came to our attention when he developed a tremor in his left hand. We have always liked to cuddle in bed, but it became impossible for me to lay next to him without getting hit. The physical leg of our stool was definitely taking a hit as well. Medication helped some, but we never really got rid of the tremors until he finally decided to get DBS surgery. Suddenly we were able to cuddle (and more) again.

The emotional and intellectual legs of our stool have not been as deeply impacted; however communication is difficult at times as his voice is quieter and his thought process is slower. Taking the time necessary and making a concerted effort to connect has been key in helping us support those legs of our stool. We dedicate a few minutes every afternoon for each other, we call it our afternoon aperitif, but it’s really more of a check-in.

Parkinson’s Disease is presenting us with more challenges than we expected yet we are still here and we are still together. It was good that we defined the three components of our relationship before his PD diagnosis so we would know what we are fighting for now. The rest is all just happening and we can adapt and accept. Our stool may tilt from time to time but it hasn’t completely toppled and I sincerely believe that we can keep it upright as long as we both keep trying.

Retail therapy works! I am not a shopaholic, as a matter of fact a lot of the clothes in my closet are older than my grandson who graduates from high school this spring. However, a recent conversation at a CarePartner’s meeting was about how long it had been since any of us had gone shopping for ourselves. I had to admit that I couldn’t remember the last time I went to a clothing store simply for the fun of it. It was not a high need and never quite fit into my current life.

The conversation bounced around in my head for weeks before I finally decided to act on it. I had to admit that it was beyond time for me to do something just for me. It then became a process of trying to figure out a timeframe to minimize disruption to our schedule. Wednesday mornings are good for us because my husband participates in a seated Zoom class for an hour before lunch. It is a safe experience for him and one that he can do without help. I normally use that time for chores around the house, but realized this could be my only window of opportunity so I took advantage of it. We live close to a mall and that hour was just what I needed. Following a successful shopping adventure, I picked up lunch on the way home making it a treat for both of us.

It didn’t matter whether I found any new clothes or not that day, what mattered was going out alone to do something just for me. Around the house I am always on alert. I put my husband’s needs first because that is how I define my role as CarePartner. Being able to walk away, even for an hour, was challenging because it was outside of my comfort zone. Even more difficult was having an agenda that was all about me, yet it was wonderful. I have decided to work this into my schedule at least once a month. It won’t always be clothes shopping but it will always be just about me, which is really what I need the most.

There are some things that we simply cannot do anymore thanks to Parkinson’s Disease. Our dancing days are probably over and no more afternoon hikes. I miss those activities, and I know my husband does too, so I am looking for ways to bring them back. I am not sure it is going to work for everything, but perhaps with some minor modifications?

We used to enjoy visiting local wineries for dinner, music and dancing. Thanks to his diagnosis, my husband is no longer the dancer he used to be nor does he like to drink wine. He likes the music but cannot compete to maintain a conversation. Our solution is to try for quieter events or venues and to sit in the back away from the main flow. We make sure they offer soft drinks as well as alcoholic beverages and then, when the dancing starts, I dance next to him at our table or maybe we can share a slow one together.

We are struggling to find a compromise for the hiking. I have taken walks around the neighborhood on my own but I always feel guilty knowing that he would like to be out there too. We have walking sticks that we both use and my husband can go about a quarter of a mile before he wears out. I have suggested that we go somewhere that he can sit and read while I walk, perhaps along the shore of the river, we are still in the discussion stages.

His diagnosis of PD can restrict our lives as it presents with new challenges or it can open us up to new opportunities. The key is to communicate about what I want to do and what might be possible. I have always liked an open-door policy and look forward to finding out just where it will take us.

For years I have been talking about hiring someone to come and take care of my lawn for me. I even went so far as to gather information from friends regarding who did their work for them including phone numbers. I always thought that it would happen soon yet kept putting it off because mowing the lawn gave me an excuse to be outdoors and it is such great exercise (haha).

I am not sure what the final trigger was, but yesterday I called one of the names I had been given and made arrangements for him to start this week. Once I made the call it became a simple process of showing him the lawn and discussing timeframes. We are all set so why am I still feeling hesitant about the decision?

My husband thinks my hesitancy comes from doing everything for myself all my life. I have never been good at accepting help so perhaps he is right. I wonder if it isn’t more that I have been keeping all the balls in the air for so long and don’t know how to let go of one for fear of dropping them all. I was raised to take care of myself and, somehow, this just feels wrong.

I am working to shift my perspective. This is a physically wearing task that I won’t have to do and, by hiring it out, I am able to support a local family business. I will accept this as an opportunity for personal growth as I learn to ask for and accept help. It gives me the chance to acknowledge that I don’t have to do it all because trying only wears me out. This is a ball I can happily hand off to someone else and my lawns will look better for it too.

My safe place is my writing desk, and my thought process is two-fold utilizing a journal and this blog. I put the deeper and more troubling aspects of my life in my journal because I know that no one will ever see it. I can write whatever I want there, analyze the thoughts and then let them go. Sometimes I find solutions to problems, other times simply absolution for my feelings. Again, it is my place to put those things I can never say, and it keeps me from letting them slip out anyway.

My blogs are where I try to deal with daily life. I consider things I might be learning about my role as CarePartner and Parkinson’s Disease. I often find that journaling about a problem leads to a blog about whatever was bothering me in the first place. The journal becomes my blackboard, the blog my finished report.

Writing in my journal, writing this blog, gives me a release, a space where I can voice my concerns and then look at them with a clearer mind and perspective. I realize that not everyone processes thoughts in the same way I do and would encourage you to find whatever it is that works in your world. Perhaps it is painting or gardening, maybe a long walk allows you the freedom to escape for a few minutes and work through the many challenges we all share. The point is that we all need that time and that space, whatever it looks like, to take care of ourselves and figure out these crazy lives we are living.

As a CarePartner, I often overlook my own aches and pains because they see minor compared to what my husband is facing. Sure, I have arthritis, who doesn’t? And the occasional headache has to be stress related, doesn’t it? Besides, I can’t be sick because someone has to take care of us and, since it can’t be him, it has to be me.

Do unrecognized (or perhaps unacknowledged) ailments indicate undiagnosed illnesses? According to an article in Parkinson’s News Today entitled Parkinson’s Caregiver Needs Prime Area for More Study, Scientists Say, more research needs to be done to look at the impacts my husband’s diagnosis is having on my life and my health. The author states, “In some cases, caregivers become an ‘invisible patient’ due to limited time and resources to seek their own healthcare.” How often do I, as a CarePartner, wonder what would happen if I did get sick so I avoid or deny my personal issues?

I am happy that the scientific world is starting to look into this topic. I have always felt that my husband is primary in this diagnosis and I am just along for the ride, yet as his symptoms progress it becomes obvious that I will end up in the driver’s seat. If I am to take the lead, I need to make sure that I stay healthy and have the support I need to survive. That means that I must be aware of what is happening in my body and recognize when things are not going well. Good self-care must start with my being self-aware, recognizing my own ailments and seeking appropriate treatment. I have always thought that PD was a shared diagnosis and now I have scientific proof.