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.

I started volunteering one afternoon a week with the understanding that my husband’s needs would always come first. I explained this to the organization I was volunteering with and they have been very good about changes to my schedule or last-minute cancellations. It has been a great stress reliever for me as I spend 3 hours every week outside the Parkinson’s world and use my brain for other purposes than survival. This gives my husband a break from me too, something he hasn’t commented on but I think he probably enjoys. He has the freedom of having a few hours alone to do things that I might not encourage if I were here.

One other benefit that comes from my work outside the home is that of helping me remember I have value beyond the CarePartner role. My volunteer position isn’t challenging yet it is allowing me opportunities to interact with new people and to learn new things. I find that after just 3 hours each week, I bring a fresh perspective back with me and always have stories to share with my husband. I think he looks forward to hearing my adventures as much as I enjoy having them.

Worrying over what may or may not have been lost is like asking for hopelessness and depression. Instead of focusing on perceived losses, I am learning to look for new opportunities for growth. Maybe my partner can’t move as fast anymore so we don’t go jogging, we take a walk. Maybe my partner isn’t as adept with a fork and a knife so we try new different restaurants or foods that are finger friendly. Maybe I can’t participate in some of my old hobbies, so I picked up a new one called Rock Steady Boxing and made a lot of new friends as well. We can let PD be a cloud over our lives or we can look for that silver lining and learn to shine. I prefer to shine!

We love to travel, it was one of the things that brought us together. As my husband’s symptoms progressed, I began to put off our plans because I was afraid of what might happen. What if travelling was difficult and he got too tired? What if he got sick and needed to see a doctor? What if I wasn’t able to care for him in a strange environment? Then I realized that whatever was going to happen could happen at home as easily as it could somewhere else. I was letting the what ifs take control of our lives.

Following this realization, we planned and took a trip to England, something that had been on my husband’s bucket list forever. The flight was exhausting for both of us so we allowed a day of rest prior to starting the rest of the trip. We chose a guided tour around Great Britain and thoroughly enjoyed it. Yes, we did take more rest breaks, but nothing went wrong. We have since been to Hawaii and are working on planning our next trip, perhaps a cruise through the Panama Canal from my bucket list.

We can’t let fear of what might happen prevent us from being fully engaged every day and taking opportunities to do the things we love. My husband won’t die from Parkinson’s so instead we are finding ways to live fully with it!

Sometimes I find it difficult to believe what my husband is saying about the progression of his illness. I think that he downplays the challenges to protect me or, perhaps, deny they are actually happening. It is a good thing that I can see the tremors and recognize the problems they bring as it gives us a place to start the conversation. I do worry that he may not be as open about the “hidden” symptoms and can only depend on him to share if (or when) they happen.

There is so much going on in his body that I cannot possibly comprehend, I can only be here to provide the support he is willing and able to accept. I need to remember that I am doing my best every day to meet his current needs and keep the doors of communication open for when things might change. And, above all, I need to trust that he is being open and honest as we travel this journey together.

We started exercising at home about the same time my husband was diagnosed. I was trying to lose weight and he decided to give it a try too. We bought a video game with a fitness program for Christmas and started with light yoga and mild strength building, it was fun. What we didn’t realize was that it was the best thing we could do to slow the progression of his illness and to prepare me for what might be coming ahead.

My husband has Parkinson’s Disease (PD) and I am his CarePartner. He was diagnosed 10 years ago and I am writing these words in the hope that our stories might be helpful to someone else on their journey.

This is where it starts, knowing that you are partners in the journey and that whatever battles you face with PD, you can overcome them. For us, it hasn’t been so much a battle as a learning experience. We both have had to make changes in how we live and have seen a shift in our roles. I have taken on more of the work around our home, something that has been a struggle for him as he wants to do things but his symptoms won’t allow it. He has lost some of his independence due to the physical challenges but still maintains a strong individuality as we move forward together in this journey. He may be the one with the diagnosis, but we both must learn to live with the disease.