It is hardest for me to be Positive when my husband is having a bad day, and it happens probably about once a week. He is feeling stiff and achy or maybe just really tired and doesn’t want to do as much. It’s really easy for me to join in the downward spiral and let things go, but that doesn’t really help either one of us. If instead, I suggest a nap for him and some quiet time for me, we can usually find a way to refresh and reset with a more Positive outlook so we can get on with our day.

Persistence, defined through Google as “continuance in a course of action in spite of difficulty or opposition”, speaks so clearly to what many of my days look like. I Persist as I take care of our house, cook our meals, provide for my husband. I Persist as I work alongside him against an invisible and insidious disease that daily takes a bit more of his capacity and could potentially take him away from me entirely. I Persist in finding gratitude in the little things we do still share together and knowing that we will keep on fighting no matter what Parkinson’s Disease throws at us.

The final “P” is Patience. This has been the biggest challenge for me as I have never been a patient person. If I need to do something, I want to do it now and that doesn’t work when you have a partner with PD. As his symptoms progress and my husband slows down, it has been a real struggle for me to step back and let the slowness happen. When it takes time for him to get something done, I catch myself wanting to step in and take over so we can get on with our day. I have to remind myself regularly that whenever I do something for him, I take away his opportunity to practice doing it for himself.

I know that if I Persist in being Patient and maintain my Positivity, I can be the best CarePartner for my husband as we travel this journey with PD together.

Our children know that my husband has Parkinson’s Disease, we had that difficult conversation a few years ago, but I am not sure that they understand what that means. Do they realize that he has tremors that keep him from doing even the simplest of tasks or that slowness and stiffness are his constant companions? They all know he is no longer driving, but do they see how that much that limits his interactions outside our home? Yes, we told them about the diagnosis, but they don’t see the progression or know the extent of the impacts. This is a man they have looked to for help and guidance, how can I help them understand his current situation without taking away the man they knew before, without taking away their respect for him and his dignity?

It isn’t easy being his ambassador, the voice that explains the challenges he faces every day to the rest of our family. They need to know that if I wasn’t here, someone would need to stop in daily to make sure his tremors are under control and that he able to safely shower and dress. They also need to accept that he doesn’t drive and that someone needs to come by regularly to make sure he has groceries and a ride to medical appointments. And, while it is important that his children understand the challenges Parkinson’s has brought to our lives, they also must see the strength that my husband shows every day as he faces and overcomes them.

I am going to find a time for a conversation with them when he is present. I need to make sure that they all know the truth in what I am saying and see that their father is there with me 100 percent. And, I need to encourage him to take the lead in the discussion when he can to make sure that we are all in agreement. Because, while I share this PD journey, it is his life and those of us who love him need to be prepared to step up should he need us. He is strong but may need us in the future, I hope I can find the right words to share the importance that we all be ready together.

I have lots of pictures in my house. Pictures of things we have done over the years, many shots of happy times in happy places. I keep pictures of our family on display. Our parents, kids, grandkids, even some of our pets. They include photos from large and small family get-togethers, crazy times, fun times, good times. When things get tough, I can look at those pictures and they bring a smile to my heart.

I also keep lots of knick-knacks, again mementos of things we have done together or things we have received as gifts from others. I have items from my family and my life before I met my husband as well as things he brought into our relationship; it is nice to have those ties to our histories as well as things we have gathered together.

The pictures of us from our wedding are probably the ones that mean the most to me because they help keep me grounded. These pictures remind me of why I get up every morning and continue in this journey. They calm and encourage me when things are difficult. I really believe that creating a warm, loving environment around helps us live a warm and comfortable life. It’s impossible to have a negative outlook when I am surrounded by evidence of so many shared positives in my life.

Sometimes I find myself feeling angry for no reason, just angry at the world. We’ve all heard the saying, “I got up on the wrong side of the bed”, somedays I think it might be that I got up on the wrong side of the world. I am grumpy and that is all there is to it.

Whenever that happens, I try to take a step outside of my current situation to look at what is happening and why. I do have the right to be upset about things we have to deal with thanks to my husband’s diagnosis, frustrated by some of the challenges it has brought to our lives. I do not have the right to take negative feelings out on him or other people around me. Feeling anger about his PD is going to happen, expressing that anger negatively is a self-defeating action because it only hurts me and the person I love the most, my husband.

I am learning to shirt circuit these moments by finding something to be thankful for that will allow me to react in a positive way. Stepping back, taking a deep breath, looking for the source of the emotion, all of these techniques allow me to regain control and realign my attitude. It is not his fault that he has Parkinson’s Disease and we are doing everything we can to minimize the symptoms. If I close my eyes and recapture the last positive thing we did, maybe a walk together or a shared touch, it helps me move past the current tension. I can let go of the anger and angst and instead hold tight to the good things that are happening regardless of his illness.  

We are in the process of getting our house ready for winter. I have “fed” the lawns, rolled up the hoses and covered the outside faucets. We are working on raking and mulching the leaves for our flower and garden beds. Thank goodness we don’t have to clean gutters anymore, they have screens. We hired a chimney sweep and now all that is left is to treat the roof for moss, I’ll be calling someone later this week to do that for us.

There are many things that I can do, some that I enjoy and others that I do simply because they need to get done. The point is that I do them and we move on. So, why is it that when I come up against something that I can’t do, I feel like I am failing?

My husband once told me “just because you can do something, doesn’t mean you should” and he was right. Case in point, we have a light on the front of our garage that needs a bulb changed out. I have tried to do this before and it was just too much. The bulb wouldn’t come out and the ladder felt unsteady. This is such a minor job, yet it needs to be done and I don’t really want to have to pay for an electrician.

Instead, I have decided to call my son and ask for his help. The light hasn’t been a problem during the summer months but we do need it working as the days get shorter. I need to accept that there will always be things I need help with and understand that asking doesn’t make me weaker, it makes me human. I don’t need to be super woman, just super CarePartner as we move ahead in our journey.

In our boxing classes it’s called “guard up”, the defensive position that keeps our gloves up ready to take on our opponent and protect ourselves from the punches. We can’t get hit unawares and knocked down. It turns out that this is great advice for our everyday lives too because there is always something coming at us and it isn’t always  because of his Parkinson’s.  

Last week it was repairs to our fireplace that became more extensive than we anticipated, this week it has been dental work for my husband culminating in a crown that popped off last night. I live at a heightened level of caution thanks to my husband’s PD diagnosis, always being mindful of the known challenges he faces. If something new comes along and I am not ready, it can really throw me out of kilter. It’s like I am juggling and have all the balls in the air, then someone tosses me another.

I am learning to stop and take a breath, knowing that I can face whatever challenge comes our way. Staying aware and ready to act will help me be prepared; opening my mind and heart will bring me through. Guard up!

We have been on this journey for over 10 years now and much has changed in our relationship. When it first began, my husband had a moderate tremor that was easily controlled by taking carbidopa-levodopa medication. He and I were both working, he was handling all of his self-care and driving without difficulties. There was still much he did around the house including yard work and preparing the occasional meals. Parkinson’s has slowly taken those activities away from him.

We knew that his symptoms would progress and decided to do whatever we could to slow that progression down. He did research on exercise programs and started participating in research studies to help him better understand what was happening in his body. His neurologist prescribed an experimental medication designed to slow progression but after a few months with no measurable success that was stopped. We continue to explore diet options and work to finetune what we eat and supplements that might be beneficial. Finally, we reached out to our community to find others with similar diagnoses and their partners to find out what they were doing.

What we have found is that all of these things are important but probably the most useful are the personal contacts we have made. We were introduced to wonderful exercise coaches and learned about nutrition and supplements that work, thanks to our Parkinson’s Support network. We hear what others are doing to fight this disease and it gives us different approaches to challenges we all face. We find solace in the fact that we are not alone in our journey and that there are resources available to help us slow this disease, we only need to ask.

We find that Rock Steady Boxing is the best exercise program for us and, thanks to virtual classes, we both are able to participate. The Parkinson’s Foundation website is a great place to start your search for advice on Diet and Nutrition.

I am spending extended times with my husband, something I dreamed of when I was still working, but that I am now finding can become exhausting. It is tough to always keep a smile on my face and a positive attitude, to try to be patient when, honestly, there are times when I want to scream. Then, I feel guilty for having those negative thoughts. It is tough to take on additional duties when I already have a full plate, but I do them because my husband can’t anymore and they must be done. It is tough to watch the person I love struggle so valiantly against this disease and still see progression of his symptoms on an almost daily basis. 

It is wonderful, however, to wake up in his arms every morning. It is relaxing to take walks together as we both enjoy the outdoors. It is delightful sharing meals and conversations. So many components of “us” are still present that I can often put aside the challenges of PD to enjoy the amazing man I married.

There are times though, when things just get too crazy. This is when I have learned to give myself permission to take a break. It may be for an hour as I read a good book or play in the garden. It may be for longer as I go shopping or out for a walk with a friend. I have a journal that I write in everyday which is a lifesaver for me. These little escapes are my release valves that allow the pressure to dissipate and give me peace. Afterwards, I always find myself refreshed and ready for another interesting day with my husband.

It started with his toenails, my husband couldn’t hold the clippers in his fingers anymore and so he asked for help. I am not a nail technician, but also know that he would not be comfortable going out for a pedicure, so I had him stretch out on the bed and set to work. Only drawing blood on one toe seemed a pretty successful outcome for our first attempt.

Toenails led to fingernails then to trimming hair in eyebrows, ears and nostrils. It was challenging at first for me to figure out how to approach him regarding things that might need attention. The technique that appears to work best is for me to mention that I am doing my own nails or whatever it might be, and then ask if he would like me to do his at the same time. I try to make the offer as matter of fact as possible and he will either agree with me or ask me to do it another time, at any rate the conversation has begun. I am careful not to say that I know he can’t do this anymore, instead I simply ask if he would like me to do it for him.

There may come a time when his personal hygiene needs become more than I can support and we will hire outside help. We will make that decision together as things progress. In the meantime, I will keep doing what I can to help him maintain his health, his appearance and his dignity.

My husband and I exercise together regularly. The program is designed for him, based on his needs as a Person with Parkinson’s, so I do what I can to modify the moves to accommodate my personal needs. He sits through the workout, I stand and move around, it works for us both. I like to be there for him, if he needs help, and I like the opportunity to be healthier myself. This shared time also gives me a chance to check in to see how he is doing while offering encouragement, support and advice, he doesn’t seem to mind.

I sometimes catch myself looking at him and wondering why he can’t do more? I build expectations of how my husband can perform based on my abilities which is not fair to either of us. I am younger and don’t have PD, I should be doing more. It also isn’t helpful to look at his fellow PwP’s as examples of how he should do because each person has a different reaction to this illness and the medications. The only way to gauge my husband’s performance is on how well he has done in the past, always remembering that he does have good and bad days.

I also need to understand that each day with Parkinson’s Disease brings its own special set of challenges. Whereas he may have had stiffness in a shoulder yesterday, today it may be moving freely and those differences will impact his ability to perform the exercises. The thing that truly matters is that whatever PD has thrown his way, my husband is always trying his hardest. I must embrace that thought and keep on encouraging him even when I think he should be doing more. He knows his body and the importance of working at his highest capacity in every moment, I will respect and support his effort.