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. 

Harmony, as defined by Merriam-Webster, is congruence or a pleasing arrangement of parts, it is agreement and it can also define a state of tranquility. Usually referring to music, it involves the simultaneous blending of more than one voice to create something fuller and stronger. Isn’t this a great definition of what I, as a CarePartner, should strive for in my life?

I always have been a perfectionist, pushing myself to do more and better, never quite feeling like I had done enough. The concept of bringing harmony into my life is challenging for me because it asks me to slow down and invite my partner to “harmonize” with me. I need to provide the space for his voice and accept a joint approach to our life that involves coordination and even compromise, things I often struggle with.

I want tranquility and peace in my home. I have to admit that it is nice when we can share the responsibilities, the challenges, and the rewards of daily living. In order to do that, I think that I will stop trying to be the diva. Instead, I will work to be a part of the duet so that we can move forward together in harmony and love.

Often it is so much easier to do things myself. No one there to question whether it is the right thing to do or not, no differing opinion on the outcome, just me and my way and it’s done. But, many of the things I am doing now as a CarePartner impact more than me, meaning that my husband may want or need to provide input. That complicates matters.

My husband has always been my partner in everything we do. It seems like PD is trying to put a wedge between us as it limits his abilities. He tires more quickly and can’t accomplish many of the tasks he once did. This puts more of a strain on me as I try to keep up with everything, but just can’t physically do many of the things he did in the same way he did them.

What is the best way to handle those situations when he and I differ on approaches to problems? Do I get to just go ahead and do it my way hoping it works out, or do I need to talk with him about it first? Is it okay if I still do it my way then since I’m the one doing it? Or, do I really need to look for his input and take the time to discuss how we are going to move forward, knowing that it may be the more difficult answer for me?

My husband does not show any cognitive decline from PD which is truly wonderful. I need to remember that he does still have a mind and opinions that need to be heard. Since this journey with PD is primarily his, it is essential that he be an active partner in our daily lives. It is my job to understand that he should provide input and acknowledge that sometimes he may know best. Then I can take that input, modify it to match my capabilities, and find the option that allows us to move forward in a safe and positive way.

I wish being happy were as simple as deciding that it was going to be so. We would wake in the morning with a smile on our faces and it would stay there all day. Instead, life comes with different challenges that make us continuously revisit our desire for happiness as we find our way through.

We all have tough things we face, especially now as we fight the pandemic. There have been days when all I want to do is pull the blankets back over my head and hibernate, however I know that isn’t going to change anything. If I can get myself up, I can take this challenge on with positive energy and find a way to move through this day and share happy moments with my husband.  There will be successes, some things will be tougher and there may even be failures, but if I remember that this will pass and there are better times ahead, we will make it.

So, rather than choose to be happy, I will choose to be positive in all that I do and I sincerely believe that the happiness will be the outcome. 

Everyone may not understand the reference to boxing, but everyone will agree that we have days that are easy and days that are tough and that we always need to be ready for whatever comes. Gels are training gloves, I need those for days when it seems like things are okay. The gels provide some light support for my hands and wrists while also giving me a sense of safety that I can do what needs to be done without injuring myself or my partner. The heavy gloves are regular boxing gloves with support and protection for me that allow me to hit harder and faster. I can fight back with all my strength and not worry about the consequences. These are for those days when PD is coming on strong and I need to punch back to keep it at bay.

What does a “gels” day look like for us? Those are the days when my husband gets up and is able to take his time with breakfast and dressing. We may have some light chores or house projects and he is able to help me with them. We both have things to do and our day seems purposeful and positive.

What can bring out the heavy gloves? There is always a low level of concern or caution when living with someone who has a chronic illness. I listen for unexpected or unusual sounds, and watch for things that are out of the ordinary for him. He may ask for help or I may hear him struggling with a task that was easy yesterday. He may seem frozen or especially quiet. Or, life may have taken a turn and we may be facing some unexpected external challenges. Whatever it is, I keep those heavy gloves close and ready for the next round in this ongoing match with PD.