We have a corgi named Yogi. He was a rescue dog, but I am going to paraphrase something I saw on a bumpersticker the other day “I’m not sure who rescued who”. He joined us on our Parkinson’s journey about 8 years ago and it has been a very good thing for both of us. While having a pet creates an additional burden, the benefits that come alongside owning a dog definitely outweigh the challenges.

It is great having Yogi and feeling the unconditional love and devotion that he brings. He is always happy to see me and will accept whatever I have to give. He can be a bit demanding at times but he is not judgmental, and always understands that what I often need most is just a hug.

Yogi gives my husband and I both a reason to get up every morning and then later takes us out of the house for his daily walk. He also knows the importance of taking naps and loves sharing the cuddle bench with us at the end of the day. He is a great listener and is full of kisses when things are not going well, or anytime really, his licking is limitless. There is the fact that he is just so darn cute that all he has to do is be here and it puts a smile on my face and lightens my load.

Sometimes I wish I could have his life, so carefree with the only worry when his next meal or walk is. While he does appear to have some emotions, they are limited and short term unlike the intense and complex life I share with my husband. So, on those days when I want to give it all up and have a dog’s life, I need to look at all the wonderful people who surround me and be thankful that I can love and appreciate them fully, PD and all. Then, I need to grab the leash and take a walk with my best four-legged friend ever.

And then, even more importantly, let me remember the choice I make as I move through the day. It is so easy to wake in the morning and say that I am going to be loving and kind, the true challenge comes in later when things aren’t going quite the way I expected and I find myself feeling frustrated or upset. That is when things go haywire and when I really need to remember this choice so I can respond calmly to all situations and with kindness in my heart, not anger.

I once had a job where I had to make collection calls to people. These were difficult and often uncomfortable conversations with people who really didn’t want to be talking to me. I put signs up around my desk reminding me to “breathe” and “smile”. Surrounding my workspace with those positive messages helped me remain calm and find ways to communicate more easily to resolve issues.

What signs would help me through the day as a CarePartner? I do have a copy of the Caregiver Ten Commandments hanging over my desk that was put together by a group called Elder Care at Home. It reminds me that I don’t need to be perfect or feel bad when I need to take time for myself. The sign I don’t have but need to see regularly is “it’s the illness, not the person” to remind me to direct my feelings of anger and frustration at PD and not my husband. Other sayings that I need to add are “don’t try to do it all” and “remember what matters most” to remind me to prioritize my tasks and my day to provide the best care for both of us.

Our home is filled with symbols of our love and those are the things that direct my actions throughout the day. There are pictures of family and past travels, photos from our wedding and silly gifts we have given each other. I am constantly reminded of the love we share and the message is clear- I need to make the choice to be calm, patient, and kind because he would be if I were the one with the disease. I will be conscious of the choices I make with my words and actions, and do my best to always make them with positive motivation and love.

Find your own copy of Caregiver Ten Commandments at www.ElderCareatHome.org.

I know that sometimes I am too independent. I am great at offering and helping others, yet I don’t reciprocate. I really don’t like to ask anyone for help with tasks I feel I should be doing. Perhaps it’s because I was raised in a can-do family who did everything on their own. My Dad was the king of duct tape and crazy glue, I think I inherited that same attitude. One thing that my husband is still trying to teach me is that just because you can do something doesn’t mean you should.

There are times in our lives when we all need a little help. My first option has always been my husband, but his symptoms of PD are starting to get in the way. As we walk this journey together, I don’t want to make him feel any less because he can’t do the things he has always done. Neither do I want to be the one who is too tired all the time because I am trying to do the work of both of us.

It feels great when someone asks me to help them; I love the feeling of satisfaction when we are done. Knowing that they trust me and feel I have something to offer boosts my ego and builds my emotional sense of wealth. I need to remember that I can give these positive feelings to others simply by allowing them opportunities to help me with jobs that are difficult or too complicated to complete alone.  The decisions I am making are not just about me anymore, they impact my husband too. I am going to learn to prioritize tasks so that I can ask for and accept the help we need so that we can both stay healthy and happy.

Sometimes it is important to get back to the basics of life and remember how lucky I am just to be here. I lost a friend last week who was younger than me, things happen. I have several friends who have lost their partners to diseases or accidents. Life is short and precious; we need to live it fully.

I can’t always know where each day is going to take us so I need to remember that no matter what type of mood I wake up in, I can choose to be thankful for the things that are good in my life and find positive ways to move forward.

When I wake up “on the wrong side of the bed”, I will turn over and look at the amazing person who shares it with me. I will think about our lives and how wonderful it is just to be walking beside him no matter what challenges we face. I will remember that he has always been there for me through my difficult times and I will be thankful that I have the opportunity to be there for him. I will find happiness in the knowledge that we have one more day to share in this journey together.  

I wonder if trying to keep a positive attitude is too much to ask when facing PD but it is the only way I know to get through. I found another interesting perspective in an article entitled “Don’t Worry, Be Happy: Parkinson’s and the Limits of Positive Thinking”.

I am in this journey because 20 years ago I fell in love with an amazing man. That loving relationship included a spontaneous and fulfilling physical component. If I let that go, I am cheating myself, and my partner, out of some the wonders that our togetherness has to offer.

When thinking about the physical relationship we share, it is important that we take the time to explore options that age and PD provide. There are changes but they are not all with him nor are they all PD related. It is important to remember that I am getting older and that my body and needs are changing too. It may be that we need to slow things down and take our time or that we need a little assistance to get things going at all. Maybe spontaneous intercourse isn’t possible, can we still find other ways to fulfill our needs and find mutual satisfaction? Sometimes a naked cuddle can bring as much pleasure as a wild night together used to bring. We work to find ways to connect and let our love hold us together.

As the disease progresses and we both age, the challenges will get greater. I spoke with a woman recently who talked about how they have adapted their cuddles to be more comfortable for her husband. She spoons from behind and it gives them the opportunity to be close without pain. When my parents reached the point that Dad was in a wheelchair, they used to put his chair next to the couch so they could hold hands while watching television. Sometimes just touching each other is enough to maintain an intimate connection.

There are many great articles on sexual health with PD and I particularly liked this page on the Michael J. Fox website entitled Sexual and Reproductive Health.

This journey with PD has been so difficult because there is so little that we can control, especially as the carepartner. I am a control freak, freely admitted, and it has always been a joke in our relationship. My husband gets it and puts up with it, unfortunately Parkinson’s Disease doesn’t.

Neither of us can control when he has good days or bad days. I can’t speed him up or make his movements easier. I can’t take away the aches and pains associated with stiff joints. I can’t stop the tremors. All I can do is recognize the uselessness of my attempts to control it all and let it go. And, remember not to complain to him because he is not able to control it either.

This is a lesson that I am still trying to learn so that I don’t become frustrated with him when my real adversary is the illness itself. I need to remember that in this shared journey, there will be battles I can fight and others that I need to step away from. I need to do my best to always maintain a positive outlook especially when things are difficult for us. As I learned a long time ago, I must learn to control my own reactions to the challenges we face and let go of all the rest. I can be a supportive and loving partner in this journey as long as I remember that we walk side by side and I am not leading the way.

Good versus bad days, I used to believe that we make our days what they are through our attitudes, but as I age, I realize that isn’t always true. While my thoughts do impact my actions, there are days when I am tired, or achy or just out of sorts and those are difficult things to work through. No amount of positive self talk can get me through if I haven’t slept the night before, I just need a nap.

My husband also has good versus bad days as well as days when the effectiveness of his medications fluctuates. Again, these changes have little to do with his attitude and much more to do with the physical challenges he faces. He may wake up feeling great but then, without warning, things change and we have a difficult afternoon or evening. The impacts of PD are so unpredictable and no one really has an answer about what actually causes him to have good versus bad days.

What we do find helpful is for both of us to check in and see how the other is feeling. Being able to communicate when things start to go downhill gives us the chance to make changes to our day. If we are having a “bad day” then we lighten up the load. Maybe we skip our exercises or let go of some of the chores. Sometimes we will decide to take the entire day off and instead go to a movie or out for a hike. We both know that surviving today is our immediate goal and we have the hope that tomorrow will be different and better.

For more information about good versus bad days in Parkinson’s Disease check out this article from the WPC blog entitled “Good Days and Bad Days with Parkinson’s Disease” .

I once had a friend who was in her 80’s and whenever I greeted her with the standard “How are you today?” her response was “upright and breathing, thanks to the grace of God.” This woman volunteered at the school where I worked and always came in with a ready smile and willingness to tackle any task we had for her. Her smile and enthusiasm was an inspiration to the children and staff alike. She taught me that the most important component of every day is remember to be thankful that you are still here to enjoy it, no matter what other challenges you may face.

There will be days when I cannot see the positive side of being a CarePartner and am feeling swamped. At those times, may I remember that wonderful woman with her smiles and capacity for good and be able to redirect my day. May I pass on her legacy as I find the gratitude to simply be “upright and breathing” and share that joy with everyone I encounter.

There are good and bad days in every life journey regardless of whether you have a debilitating illness or not. Sometimes those bad days are going to be compounded by bad events or just normal events that don’t go the way you expect. One example for us is that I have nights when I don’t sleep well. They are usually followed by days when I am edgy and a little cranky. This is okay as long as my husband is having a good day and we don’t have anything extra on our schedule. If, on the other hand, he is also tired or just having a bad day, things can spiral down quickly to the point that even normal interactions become challenging.

On those tough days I find that if I can remember to take a moment and look around me to find something I am grateful for, it can help get me back on track. It may something as basic as looking up to the sun if it is shining or appreciating the rain that keeps our trees green if it’s not. Sometimes I just need to remember the simple fact that we are still here and still together.  This is the source of my resilience, the idea that no matter what life brings I can still find things to be thankful for. I can find those positive things around me that will help us make it through any difficulties of today with the hope that tomorrow will be better.

It is easy to get caught up in where we are in the progression of my husband’s PD and forget to take advantage of the opportunities we have for living every day to its fullest. When I start to stress about his tremor or get frustrated because he is moving so slowly, I need to take a step back and consider that tomorrow we may be in a totally different place.

This disease is so unpredictable and the path is so different for each and every person who has it, we can never really know what tomorrow will be like. I remember when we were trying to help my mother care for my father as he reached the later stages of PD. He had a very difficult time with delusions, dementia and violent behaviors. None of us knew anything about the illness or what to expect. It was unbelievably frustrating to be on the outside and not know what to do to help. Now that it is our turn, my husband and I have armed ourselves with education about the disease and have built a great network of support around us so we won’t face the same difficulties they did.

Parkinson’s Disease is progressive and there will be new challenges. I need to make sure that, while we might be surprised by them, we don’t let them overwhelm us. There are going to be good days and bad days, I can’t let that reality impact my capacity for caring. I need to remember to treasure each day for what it is, another day we have together. We can keep moving forward through the stages of PD if we hold tight to each other and the love that brought us together in the first place.  

We learned much about living well with Parkinson’s Disease at the Davis Phinney Foundation for Parkinson’s website where their focus is on helping people with PD and their CarePartners live well today and every day.