There used to be a movement to “visualize” everything you wanted so you could make it come true. We were told to surround ourselves with pictures of things we wanted or wanted to achieve and we could get them. I believe that there is some validity to this idea. If we keep a positive mindset and focus on what we want life to be like, we can impact how we approach things and our perception of the challenges we may face. Living with someone with PD is going to change your life. Accept that change and look for the “silver lining” to the cloud. Hold tight to what you want from your new life and you will find ways to make it happen.

Our world is in turmoil right now. We are facing a battle that we don’t understand nor do we see a clear pathway through. What I have decided to do is to remember the concept of letting go of things I cannot control. I absolutely can’t stop what is happening outside my home, but I can work to minimize the impact it has on our daily lives. So, even in this time of extreme craziness, I can do my best to make our home a calm and loving space. I can try to maintain a sense of normality even when there is none outside our doors. I can provide stability within these walls, with the hope that it will soon return to the world beyond.

What does this mean when you are living with someone with Parkinson’s Disease? There are the obvious things like attending medical appointments, but what about making yourself familiar with their hobbies so that when they can’t do them on their own, you can help them continue doing things they enjoy? What about being part of their exercise program, whether as an exercise buddy or a volunteer for their trainer, with the additional bonus of improved health for you as well?

And what about your life outside of PD? My husband is currently paying all of our bills. I am becoming more active in that process because at some point, he is not going to be able to continue and I need to understand what is happening. I wish I had been more attentive to the things he did outside the house because, now that he can no longer do them, it has fallen to me and I don’t know when or what needs to be done. I know he gets frustrated and feels bad when I have to constantly ask him how to do chores that were once within his domain.

I need to fully understand what PD is doing to him and what he does to alleviate the symptoms. I need to know enough about his diagnosis so that when something happens that is not PD related, I recognize it and can help him figure it out. Because, unfortunately, someday I may be figuring all of this out by myself and I want to be able to make appropriate decisions with knowledge and love. I want to make sure that our journey, no matter how difficult it becomes, is always filled with the understanding that we did everything we could do to make it through together.

Wouldn’t it be nice if whenever you woke up in the morning there was a message saying today will be just fine or today is going to really be tough? Then, we could decide before getting out of bed which persona to embrace in our daily battle with PD, calm and loving partner or fierce warrior caregiver. (Personally, I find that I am most often having to mix the two.)

We have those days when everything is going right. My husband’s symptoms are under control, the sun is shining on us and life is going well. Then, the next day, neither one of us wants to get out of bed. We are tired, achy and the thought of facing the world is just too much. We are learning that those are the mornings when we most need to cuddle. I roll over into his arms and we may drift back to sleep for a few minutes or maybe we’ll talk about what the day has in store for us. Connecting for just a few minutes and sharing in the challenges we are feeling gives us the strength to get up and get going in our daily battle with Parkinson’s.

The biggest thing to remember is that whether you are celebrating or just surviving, you are doing it side by side with your partner. The battle should never be between the two of you but should always be shared as you follow the pathway you are forging through PD.

We recently celebrated my birthday. There was a time when we would have had a big family get together and a cake from a local bakery to top it off. It was a lot of work for my husband who had to plan it all and for me, as we got the house ready and prepared the food. While it is always fun to celebrate together, lately it seems like it might be more work than it is worth as we both get older and less capable of doing it all.

This year outside influences kept our celebration small. I convinced my husband to help me bake and frost a cake. We picked up our dinner from a local restaurant. Then, we sat down and enjoyed our meal with a glass of wine before watching some of our favorite tv programs. It was a quiet evening, yet very relaxing. I think that we may be setting a new norm for future events thanks to forces beyond our control.

I have always enjoyed sharing celebrations with loved ones but at what cost? Sometimes we try too hard to keep things as they have been and add stress to an already challenging time. I have found that it is important to take an honest look at what we do remembering that my husband’s diagnosis has brought about some changes in our lives and our capabilities. What can we actually do that won’t overcome either of us? I am learning that it may be better to plan simple activities rather than to try and do everything we have always done, just because we have always done them. Instead, I will be thankful that we have another celebration to share and find ways to make it enjoyable for both of us as we create new memories of loving times.

What is really interesting about this journey with my husband is that, while we are both impacted by his diagnosis of PD and headed in the same direction, our paths are still so different. They will intersect and intertwine, but they are independent roads that we each must follow with unique twists and turns. The scenery is very different based on the perspective you bring to the route.

There are times when it feels like we are on a ship and I have to be the cruise director planning activities to help us get through every day. I am called upon to the be ship’s engineer to make sure things are all functioning properly to propel us forward or the communications officer handling all official correspondence like phone calls and appointments. I like to wear the Captain’s hat the least because that means I may have to make major decisions that could have negative impacts on our lives.

The most difficult component of this journey together are those times when I realize I am basically a passenger watching his struggles. We did not buy ticket for this ride, nor do we have a map for the road ahead, so we can never know when we will encounter sharp curves or rough waters. What I can try to do is recognize and respect the differences between the challenges we each face and then work to provide support he needs at the appropriate times. I can also remember that I am not in this alone, I have a crew of people who are ready to help me when I need it.

Our journey will be difficult at times but it can also be an adventure as we explore what life still has planned for us. Let me embrace a positive attitude as we move forward with adventuresome spirits today!

Being a Carepartner is such a big job in and of itself that we sometimes get caught up in that and forget to do things for us. I want to stress that this about doing for us, not for our partners. If we don’t find the time to care for ourselves in the same loving way we care for our partners, we will burn out and won’t be able to care for either of us.

We all do the things that have to be done to get through the day, without thinking about ourselves. I want to encourage you today to take the time to do something that has meaning just for you. Maybe you need to take a short walk alone or find time to read a book. Maybe your joy comes from gardening or making your favorite recipe. Whatever it is that will bring peace to your soul, make the time and do it today.

Our neighbor came over yesterday and offered to do our grocery shopping for us. She has a young family of her own and yet was willing to take on one of my tasks. It was unexpected and extremely kind of her. I declined because we really needed to get out of the house, yet we did exchange phone numbers and I feel we connected on a personal level. These are the moments, when someone else offers to do something for us just because they can, that I really find my gratitude.

As my husband’s CarePartner, I often feel overburdened and I think it comes from some crazy idea that I have to do it all. I know that letting others help will lighten my load, but I don’t want to burden them or interfere with their busy lives. What I sometimes forget is that when I accept their help it expands our circle of support, not just mine. We both have a chance to start a new relationship, something that is so valuable as this illness progresses. Instead of “going it alone”, I need to open up and be ready to accept help. Then take a moment for gratitude as I open our world to a new friend.

We spent a few days in Vegas last month. Imagine my surprise when, after checking into our hotel, I looked at my phone and learned we were in “Paradise”. Granted it was Paradise, Nevada, but it did make me chuckle. And it reminded me that perception is everything. I am sure that section of the Nevada desert probably did look really good to someone once upon a time and so they named it Paradise. For what it’s worth, being there with my husband was pretty good too.

Daily living as a PD CarePartner may not be what I was expecting from retirement or what I want it to be, but I do have an opportunity to continue sharing my life with the person I love. When the challenges begin to overshadow the joy, I will step back and find ways to protect our precious relationship. The day may come when we need help, including respite, with the understanding that eventually I may not be the best person to provide caregiving services. No matter what the future brings, I will remember that Paradise lives in my husband’s arms and I will do what it takes to protect the joy and the love that we find there together.

Wow, we never know what new problems life will throw at us, do we? As I write this, we are two weeks away from spring and yet we woke up this morning to 2 inches of heavy, wet snow. It was beautiful watching the big flakes coming down, but in addition to the flakes, a tree in our backyard came crashing down and took out part of our fence. Sometimes it feels like someone is trying to see just how much we can take and keep on standing, doesn’t it?

While it is true that I can push through, sometimes it is more important to look at the challenge with clear eyes and mind and decide if I need help with it. In this case, it was obvious that we would need help and I wasn’t sure where to start, so I turned to my husband. We talked about what needed to happen and then I started making calls. There are times when the best way through may be pushing ahead, but it may also be asking for help, or moving in a totally different direction. The best way forward may be to look for help where you always did before PD, from your partner.

As I am faced with new challenges, I will keep an open mind and look for the best way to meet them recognizing that it might not be the most obvious or the most direct. I will acknowledge that my partner is still here and still very much a part of my life. He must be included in decisions about the challenges we face. We are a team and, if we work together, we can meet any challenge that comes our way.

Knowing when to step in and help your partner can be difficult, especially as the symptoms of PD progress. What is easy for my husband one day, or even one moment, may be impossible the next. I try to always be available and to remember to ask if I “can” help, not if he “needs” help.  If there is a reason I think I should step in, I will share that, but he still makes the final decision.

When things are rushed, I offer to help him get ready rather than wait for him to ask so we will be on time. Other times, I will see him struggling with a task and ask if I can help before it becomes too frustrating for him. There are some things that we both know he needs assistance with and I step in automatically. I am especially careful when we are in public to make sure that I do not take away his autonomy or his dignity. He is still a very capable man and I don’t want to step on that while trying to provide support.

Helping isn’t a one-way street at our house, I am vertically challenged and still need to ask him for help reaching items on top shelves. He also helps with other chores around the house that are PD compatible such as vacuuming and emptying the dishwasher. Our relationship may not be quite 50-50 anymore, meaning that my opportunities to help are more frequent than his, yet we are still a team and I need to respect those things he can do and encourage him to do them.