Our grandson graduated from High School last week and, of course, we wanted to go to his commencement. We adjusted our daily routine so that lunch was on time, but my husband was still able to get a short nap before we needed to leave for the ceremony. His mom gave us tickets for seating on a lower level with easy access and we arrived early to get settled in before the crowd arrived. When it was over, we found our grandson in the lobby and wished him well but skipped the reception, there were too many people and we already had a plan to meet up for a congratulatory dinner the following day.

What really struck me that day was that I was the one feeling anxious. My husband was doing really well and yet I was so stressed over what might happen, I couldn’t relax and enjoy the moment. The crowd made me nervous and I was sure he was going to take a fall. I was extremely conscious of the situation and he was handling it all as if we did it every day. I had thoughts of connecting with our daughter before we left, but that was lost as all I could think of was getting out of there.

We went in to this situation with a plan and with great intentions. Where things went wrong was when I became so focused on what might happen, I lost sight of what was happening. It wasn’t that I wasn’t being respectful of the challenges he faced, but I was forgetting his capabilities. My husband was functioning well, yes there was some risk but we were able to minimize it. My overly active care meter interfered with our ability to enjoy and celebrate the day. Don’t get me wrong, we had a good time but it could have been better. In the future, I will respect his capacity and be conscious of my own unsubstantiated anxieties so they don’t get in the way.

My husband has an appointment with his neurologist this week, so he has been preparing a list of things he wants to discuss. In the early days of his diagnosis, I went to his appointments with him simply as an observer. I wanted to hear what the doctor had to say so that I could provide the right support. It was also a good time to watch the tests she did, hear about changes she was seeing and what we thought should expect next.

As the disease progressed, I realized that my input was also needed. My husband didn’t intentionally mislead the doctor, but he was always on his best behavior at appointments. It wasn’t a coincidence that we tried to schedule appointments during his “on” time with medications. She would have him walk up and down the hall, do hand and cognitive exercises and they were okay. Then, we would come home and I would watch as he struggled to hold his sandwich or stumble getting out of a chair. She wasn’t getting a full picture and I needed to help fill in the blanks.

Before we go to his next appointment, I am going to take a moment and create my own list. It will include my observations, questions and concerns. I do plan to share my list with him, not for his approval, but so that he won’t be surprised by what he hears when we are with the doctor. It is possible that many of our concerns will be similar. There may be things I bring up that he may not like, I still think they need to be discussed.

Parkinson’s Disease has been defined as a shared diagnosis between the Person with PD and their CarePartner. If we are to share in the illness, we also need to share in the treatment plan. As the primary member of his care team, I need to have a voice in the direction that care takes. I don’t intend to override him or become his voice, but instead communicate my vision of our reality. I will be participating alongside him in the appointment with our neurologist this week.

I was sitting in on a CarePartner zoom meeting the other day and one of the participants was really struggling with their load. I have those days too, when it seems like I can’t get ahead of the work and nothing is going well. Those are the days when I step back, take a breath, and find thankfulness for my own health and the opportunity to be here. I look at my basic needs and remember that I have a roof over my head when so many are houseless, food on my table when so many are going hungry, and a husband who loves me even though it comes with Parkinson’s Disease. I am a lucky woman and am grateful for it all.

Finding that sense of gratitude simply for life itself allows me to put things into perspective. I know a woman who lost her husband to PD a couple of years back.  She talks about how difficult her life could be, but that she wouldn’t trade a day of her journey because she was travelling it with a man she loved dearly. I understand that sentiment. I also know that it could be me who has the chronic illness and that my husband would be right here by my side taking care of me. I am grateful for the love we share that creates that bond. We are definitely together “for better or worse”.

Let me finish with something very personal, I want to say thank you to everyone who chooses to read these words. Your continuing support and comments give me a feeling of belonging and validation. You read my stories of struggles and triumphs, consider the things I say, perhaps you get encouragement from something I write. You help me get through my days without even knowing it and for that I am deeply and sincerely grateful. Thank you so much.

I have a hard time with interpersonal relationships. Perhaps it’s because I am more of an introvert and never really feel comfortable making that first step or, come to think of it, even the second one. I don’t find myself very interesting and can’t imagine why anyone else would. I can arrange things, like meetings, but reaching out to get together with another person one on one is a challenge. People have told me that I am quiet, reserved, even stand-offish, which might be true since I’m often the person in the room standing off to the side observing rather than participating. Maybe that is why I like to write, there are no social rules to be observed and I am not putting myself at risk of rejection. If people don’t like my words, they don’t read them and I never know. It works pretty well for me.

We have become part of a Parkinson’s community that I care deeply about. I see the other members struggling with daily activities and want to offer support but I am not sure how. As I said above, if is not easy for me to make that phone call. I am getting more comfortable with text messages, but that is really not my generation’s preferred method of connecting. Perhaps it is better than not reaching out at all and gives the other person the option to reach back when it is convenient for them?

I know that making connections is as valuable for me in my role of CarePartner as it is for the folks I connect with. If I can be a shoulder they need when times are tough then, perhaps, we can also share the easy times together. It is a good feeling to know that I have been there for someone else and able to provide some assistance. It’s even a better feeling to know that I have a fellow traveler on this journey and, even more importantly, a friend.

I came home from a recent support group meeting and looked at myself in the mirror. It was then that I realized I hadn’t combed my hair before leaving the house. Thank goodness it was a group of fellow CarePartners because they understand and forgive me if I appear frazzled. After all, they all have similar situations and know exactly what I mean when I say it’s been an interesting day (week? year?).

I find it interesting that I always try to give my husband a quick check, not that he knows it, before we go anywhere. I want to make sure he looks his best because he has always been very careful with his appearance. He may be wearing blue jeans and a sweatshirt but they need to be clean. He likes to be clean shaven and well-groomed, so I do what I can to support that. Me, on the other hand, I just like to get out the door at approximately the right time so we won’t be late. Maybe it’s with combed hair, maybe not, I guess. I often turn to him as we are headed for the car and ask if I look okay. I know he will say “sure”, no matter what I really look like. He is so kind.

Looking good takes time, being good is a constant state. I have decided that my appearance needs to be acceptable but I don’t have the energy to worry about more than that. It is more important that I spend my energy trying to be kind, open and supportive. If I have clothes on and am getting things done, then great. If I have also combed my hair and washed my face, even better still, but I am not going to stress over it. If I am happy and my husband’s needs are met, then I know I am doing what needs to be done and all is okay.  

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.