I think we all have those times when the challenges seem overwhelming and we wonder if we can go on. It is especially tough when I think about what might be coming. If I can’t make it through today, how will I ever make it tomorrow?

Those are the times when I remind myself to simply step back, take a breath, and look for the good things that are still all around me. I look at the blue sky or the green trees. I look at the home we have created together or pictures of our families. I look at my loving husband and realize that no matter how difficult things can be, I am thankful to have him in my life.

Then, if I can determine the thing that is causing me the most distress, I can usually find a way to tackle it differently. Addressing the challenge with a new perspective should allow me to move forward. One small victory can reset my overwhelmed outlook from one of negativity to a more positive can-do attitude. And, I will have one more thing to be grateful for as we move together in this daily journey with PD.

The longer I live the more I realize just how little I actually can control in my life. If I had control, my husband would not be fighting Parkinson’s Disease and we would not be living in a world where the smallest of viruses can bring our society to its knees. Life would be simpler and the world would be a friendly and open place for everyone to live.

Unfortunately, I am not the ultimate Goddess of the Universe with control over everything and everyone in creation. I am just me, a CarePartner who strives to do her best every day as she cares for her loving partner with PD. Which brings me little control in my life but does give me a sense of fulfillment when I do it right.

So, what do I have control over? I can control some of the schedules around our lives, making sure that I provide a supportive environment for my husband as he struggles with his illness. I can accept my lack of control when things get too crazy or overwhelming and take a step back so I don’t make it worse. Most importantly, I have control over my actions and reactions to our daily challenges which allows me to choose to face them with a positive attitude. The winds will blow, and I can withstand anything that comes, as long as I keep a positive outlook and seek the joy wherever this journey takes us. 

Caring for a loved one can wear you out and may eventually wear you down. It is important that you always keep an eye on how you are feeling and try not to do too much. Having said that, I am probably the queen of tackling things I shouldn’t and taking on more than I can handle. Gutter cleaning, power-washing and chopping firewood are just a few examples of times I probably should have said not me.  

On those days when I finally do admit that a break is needed, I talk with my husband and let him know that I am tired and that I am going to do try to catch up on some rest. We did this yesterday, sat on the couch and watched movies all afternoon, and it was good for both of us. We laughed and cried with the movies and were able to escape our lives with PD for a while. I slept well last night and feel better today and ready to take on all my regular challenges.

After a day of R&R, my body and soul are refreshed and, even though the tasks are still there waiting, I can tackle them with renewed energy and motivation. I can also take a moment and look at them with clearer eyes as I decide whether I need to do them or if I need to ask for help and then move on. A rested CarePartner makes wiser choices in this lifelong journey of ours.

Stress comes at us in so many different ways and we are so busy trying to be patient with our partners that we don’t always see it happening. In this moment, I am very stressed about something I saw on the internet. I recognize where the stress is coming from but am not sure how to redirect it and make it positive. I think the first step is to walk away from the source, but then how do I let go of the stressful thoughts and move forward?

When I am faced with something that stresses me out, I try to find the source, take a couple of deep breathes and begin the process of letting it go. One technique I learned a long time ago is to ask myself if this will matter in 5 years? More often than not, the answer is that I won’t even remember it in 5 years making it easier to laugh and let it go. When that doesn’t work, I try to physically move myself into doing something more positive. I know that when my body is involved in a positive activity, my brain will eventually follow. This may be something as simple as making myself and my partner a cup of tea. Anything that will derail me from the original train of thought so I can begin again in a more positive direction.

Being a CarePartner is an interesting journey without adding unnecessary stress. I am learning to avoid things that can be triggers for drama and search out the things that sooth my soul. I am a fan of yoga, cozy mysteries and light jazz music. I like scented candles and warm fires. There will always be stressful times in my life and if I can continue to be conscientious about providing time for soothing activities, I will be ready when it strikes.

A friend in the PD community told us recently, “my wife doesn’t think I can do anything anymore”. He admitted that he often tries to do things he probably shouldn’t just to prove that he still can. It was eye-opening to me. Does my husband feel that way too? 

It is a slippery slope once we start doing things for our partners because there is always the danger that they going to agree that it is easier to let us do them and give up. I try to be mindful of this and always encourage self-reliance first. If I ask whether he wants the help, letting him make the decision, it goes down much better and he often surprises me. Tasks that I would think could be difficult don’t seem to bother him while other tasks that seem easier create a challenge.

We both agree that there are those things that he just shouldn’t be doing anymore because of the severity of his tremor. When those things come up, we talk about them and then decide how best to approach them. We can usually find a way to share the chores so that we can both participate in safe and constructive ways as we both work to live positively with his PD diagnosis.

I love our support groups and the network we have in this community. There are so many wonderful people on similar journeys who are ready and willing to share their expertise and their love with us, it really helps me keep going. Yet, at the same time, I often look around me and feel like I should be doing more. I see people who seem to have so much more capacity than I do. They are involved in volunteering, or active in hobbies, some are still working, while providing excellent care for their partners. How do they do it all and do it so well?

What I need to remind myself of is that everyone has different gifts, abilities and capacities. What I am doing is right for us as long as it is moving us forward in our journey. If, and when, I have time or the energy to add other activities, they need to be continuing in that direction. I don’t need to add things to my life that simply add stress or create additional work, being a CarePartner is enough of a load. If I am trying to do something extra to impress others or to somehow inflate my own self-worth, I need to take a step back and remember what really matters, taking good care of us first.

It is time to stop comparing myself to others and recognize that I am who I am meant to be and that I am doing what needs to be done. Are there other people who are doing more than I am? Definitely, but that doesn’t mean that I am not doing enough. I need to accept that my life is unique and that my response to it is sufficient to meet the needs. Taking care of myself, my home and my husband is all that matters, and no one can do better than me in any of those jobs. 

We learned recently that the gym where we practiced Rock Steady Boxing has closed. It feels like a gut punch because boxing has been such a positive outlet for both of us and there aren’t many other options in our community. Right now, I am feeling sadness and concern, wondering how we will be able to replace this in our lives. Which takes me to the place I need to be, looking for a replacement. It would be easy for me to stay in the moment and feel sorry for what we have both lost or, I can let it go with the understanding that we now have an opportunity to find something new, and hopefully as fulfilling, in our lives.

It is also vital that I take a moment to acknowledge the positive changes training at this gym have brought us over the past few years. I had never been a gym member so didn’t understand the connections that are a vital part of a fitness program. As we worked out together, we formed friendships with fellow boxers that extended beyond the walls of the facility. We shared our struggles with the exercise routines, but also learned to share the struggles of life with PD as we came together 2, 3 or even 4 times a week.

As our physical conditions improved, our network of friends expanded and we grew as human beings. It is no wonder the gym was called Evolve because that is what happened. Because of the positive leadership provided and the Rock Steady Boxing program, we truly evolved, and I am so grateful. I know that the time we shared was well spent and that whatever life brings us next, we will take a different and better perspective on wellness thanks to the wonderful people we met at Evolve Fitness Lab.

I have to admit that we invite the craziness in everytime we turn on the broadcast news or open our daily newspaper, but it is a controlled invasion, we can turn it off or put it down at any time. It is good to stay in touch with what is happening in the world, it can be bad to let it take over everything you do. And, the added stress can exacerbate your partner’s symptoms.

I grew up in a household where the evening news was on every day and my mom listened to it while she cooked. We subscribed to two newspapers, granted the local was only once a week, but it was important to my parents that we stay informed on world and local happenings. They were both strong union members and took an active interest in national politics. I know that who I am today is the result of those early influences, but that is also why it is difficult for me to disengage and let the world go when things are so chaotic. 

My husband shares many of my interests and we do read the morning paper. We turn on the evening news for about an hour per day, which may still be too much, but I am cooking while it is on and he often takes a nap. We have been working on our priorities so that we are not immersed in things over which we have no control. We are limiting our contact with the outside world so that our internal world can be ours and be a safe place.

Life can be crazy, and dealing with Parkinson’s Disease doesn’t make it any easier. Make the changes you need to create a safe haven in your home and hold tight to it. You and your partner both need and deserve the break.

Each day brings something new on this journey. There is no smooth and clearly defined progression of symptoms for people with Parkinson’s and the disease presents differently in every person with the diagnosis. I do know that we will have good days and bad days, I don’t know why or when they are coming, only that they will. I also know that whatever we are seeing now will probably get worse at some point, I just don’t know when.

I have read about the progression of Parkinson’s Disease and looked at the different future pathways we may face, not knowing what is coming, only that something will. I have considered the decisions we, or even I, may have to make one day in caring for my husband and wish that I had a crystal ball so we could be prepared.

I could live my life worrying and anticipating what is coming but instead I choose to enjoy what is right now. Yes, we deal with tremors and rigidity, yes life has slowed down, but we are still here. I will work each day to stay present for my husband and myself so that we can have a life that is worth living. Then, when the next thing comes, we will be ready and face it together.

When we were first together, we decided not to let our relationship get boring or stale. One of the techniques we used were bi-monthly surprise getaways. One month he would plan a night or a weekend away, then 6 weeks later I would plan something. It was so much fun as we explored local options and even discovered some treasures at the beach or up the gorge. It definitely helped us keep things fresh and fun, and there was always another little getaway coming, something to look forward to.

Unfortunately, as often happens, life became complicated and our opportunities to getaway became fewer and farther between, we became homebodies. Then, he was diagnosed with Parkinson’s Disease. How would this impact our ability to travel and what would it mean to our future?

What we have learned is that PD only impacts us to the extent that we let it. We have to make modifications and allow for a few more rest stops along the way, but we are still making our plans. There may come a time when actual vacations become too difficult and all of our experiences become day trips, we will still do what we can to get out and enjoy our lives. At any rate, we will keep planning and taking those little adventures because we all need something to look forward to and the positive anticipation motivates us to keep on going.