I am familiar with the philosophies of several different 12 step programs, having helped others as they faced their demons over the years, and completely agree with the concept that you must believe in something bigger than yourself. For some the belief focuses on a god or goddess figure, for others it may be science and this incredible natural environment that we live in. I think for me it is a combination of the two, as I find myself looking to the universe for divine guidance.

Many of my friends in the PD community have ties to churches through their faith, I used to be connected to a local congregation but have let it go. It was a good community but I felt that I was living a lie since my questions often outnumbered the answers I was finding there. Instead I find strength in my loving relationship with my husband and in the amazing PD community that surrounds us. It brings me peace to know that when something challenging happens, I can reach out to others who are facing similar issues for understanding, help and hope.

My foundation is the love I see on my husband’s face when we wake every day and the friendship and support I get from friends and family. While some programs encourage 12 steps, the only steps I needed to take in my life were to accept that I couldn’t face this alone, then to reach out to the strength and love of the people around me. I will always be so thankful that I did.

We just got a tax bill for almost $2500…but the sun is still shining and life must go on. When the world seems to kick us in the teeth, we need to come back with a smile and, as that old saying goes, keep on truckin’.

Negative things happen everyday- the food I prepare is difficult for my husband to eat, he has a hard time getting dressed, the sun isn’t shining when we go out for our walk. I can let these things get to me and spoil our day, or I can let them go and focus instead on what is going right, we are sharing a meal together, he is still able to dress himself, and we live in a nice neighborhood where walking is a pleasure.

When you live with someone who has a chronic illness, it is often easier to see the negative side of things as you watch their symptoms progress. If I do that, I am not going to be a help to him or to myself. Instead I need to look for the positive, what we can still do and the adventures we have ahead. Life is always worth living as long as we don’t give up!

It is sometimes easier for me to ignore what is happening or to try to deny that I am seeing changes in my husband’s abilities or our relationship, but then I am only fooling myself. PD does bring changes, physical, mental and emotional, and being able to look at them honestly and with acceptance will prepare me for what might come next.

When my husband had shoulder surgery last year, he suddenly needed more care than I was sure I could give. The fact that we were able to talk about it and work through it together helped us manage. If I had been in denial about the help he needed, we both would have suffered and his recovery would have taken much longer. It is always better to acknowledge honestly where you are in this journey especially since we can never know exactly where we are going.

Today I will work to accept that we are not where we were a year ago and be thankful for the fact that we are not where we will be a year from now. I will be open to this moment and accept whatever this day brings.

For the first few years after my husband’s diagnosis, we tried to continue living a normal life. We were both working and his symptoms weren’t causing major impacts. We shared the news of his illness with a few friends and family members, but for the most part life went on as always. Then, things started to change. The symptoms became more pronounced and we had to start making adjustments. His work was impacted by speech and tremor issues and he decided to retire. I continued to work but worried about him being at home by himself. I joined him in retirement 3 years later and we were both homebased. Our world became physically smaller.

Retirement gave us the time to reach out to our local Parkinson’s support systems. We had spent the first 7 years standing alone in our battles with PD, and suddenly we found that there were many others facing similar challenges. These were people who were able to identify with the daily struggles we faced and who opened their arms to welcome us into the community.

Now we find that although our world may seem smaller at times due to the limitations this illness places on my husband, our social world has blossomed. We have people in our lives who may not share our political or philosophical views but who share something deeper, a friendship that comes from true caring. Our world may be physically smaller but our world of true friends is huge and we are both eternally thankful for that.

My husband doesn’t experience freezing episodes where his feet get stuck to the floor and his body won’t respond to his brain. Who knows, it may still be coming, and it is helpful to know what to do as we prepare for what might be. So, we recite the phrases and practice the skills- STOP in our tracks, THINK about what we want to do, SHIFT from side to side, and then STEP forward with purpose. While he may not need it yet, I have found that this simple concept can be applied to many things I face in life.

We all need help sometimes when it comes to making decisions and these steps have proven helpful for me. When I am facing a difficult situation, if I stop myself before acting, I can take the time to think about what is really happening. How did I get here and what are the possible options or actions I could take to resolve this problem? Am I the right person to be doing it or do I need to reach out for help? What really needs to happen next?

After taking a moment, I can shift my way of thinking to make a decision based on facts instead of my personal needs or assumptions. I can plan a mindful approach to resolve the issue before stepping into action. I love the fact that by supporting him in his journey with PD, I have the opportunity to learn new skills and hopefully becoming a more thoughtful and caring individual.

If your partner experiences freezing, check out this article I found on the Very Well Health website called Coping with Freezing In Parkinson’s Disease.

Taking on the caregiver role definitely can interfere with our relationship especially in times when we are trying to be intimate. We have found that spontaneity is a thing of the past so we now schedule Playdates for ourselves. As we learned in a recent OHSU program on Intimacy and Parkinson’s*, if we can plan for birthday celebrations and holidays, why not treat the loving side of our relationship in the same way? Setting a date allows us to look forward to it with excitement and makes sure we are ready when it arrives. Usually we try to set aside time once a week, and it gives us an excuse to let go of everything else.

We take advantage of all those times when we can be loving whether it is cuddling in bed every morning or candlelit dinners at home every night. The balance in our relationship has shifted, but he still knows that I am his partner first and caregiver second, I hope it will always be that way.

*The Intimacy and Parkinson’s presentation was part of the OHSU Essential Tools for Managing PD. Find more information at their website OHSU Parkinson Center.

As your partner’s illness progresses it can easily take over both of your lives. As an example, my husband now takes pills 6 times a day, but can’t eat for an hour before or after. The pills make him drowsy so he takes a nap every day after lunch. We know that exercise is the best remedy for PD symptoms, so we box twice a week which takes up 2 hours each time and we go to a 90-minute movement and voice class once a week. In addition, he tries to get 20 to 30 minutes of moderate exercise daily. Isolation can lead to anxiety and depression so we (mostly I) plan opportunities to meet with friends once or twice a month. We joined a support group that we attend regularly as well as having a breakfast off shoot of that group that meets once a month. We work to eat healthy, well-balanced meals on a regular schedule and try to cut down on sugars and processed snacks. Finally, we strive to get 7 to 8 hours of sleep every night. PD may not be terminal but it definitely is impactful.

In the midst of all of this work to support my husband, people are reminding me to take care of myself. I am supposed to find outside interests that provide a break from the realities of living with someone who has PD. I do try, but when I have the time, I don’t have the energy and when I have the energy, I really want to spend it with my husband doing things we enjoy together. So, for now, it will be the small breaks that will keep me sane as we continue our battle, understanding that, unfortunately, PD is taking the lead.

This morning I find myself caught up in negative thoughts and worries, anticipating problems before they happen. We have a project to do here at the house. I want to do it myself, but my husband wants to help, which I think will be a problem. We often have very different approaches to things and I expect that he will want to do things his way; he does like to be in charge. It makes me nervous having him watch, as I am sure that I will have a very different idea of how this should be done.

If I stay in this mindset, we will not get anything done and it will end up being a stressful day. However, I can choose to look beyond my negative state of mind and communicate my concerns with him. If I listen to his years of experience, perhaps we can both find that there is a positive side to the situation, as we work through to a joint solution. I just need to have faith that things can go right as long as we work together, and be thankful he is here to help, not push him away.

We have many friends on this PD journey at various stages of their illnesses. It is interesting to look around and see how different this disease is for everyone. Some have little or no tremor whereas others, like my husband, struggle with hands that shake most of the time. There are members of our network who struggle to walk and another who runs marathons. It is amazing how the same diagnosis can present in so many different ways.

When we first learned about the local support group, we were hesitant to join. I didn’t know what we would find and wasn’t sure that I wanted to meet others who were more advanced in their illness. I was afraid to come face to face with our future. After being part of this amazing group of people for more than 2 years, I am now ashamed to admit that I ever felt that way. The reality is that we won’t know what the future holds for us until it is here.

Yes, there are people out there who have more advanced symptoms of this illness. Some are in wheelchairs, some with walkers, but they are still fighting. I have met so many wonderful people because of this diagnosis and know that we will be stronger thanks to their friendship and support. They are not our future, they are our present, and together we make it a better journey for all.

The physical characteristics of Parkinson’s Disease can interfere with a person’s ability to communicate which makes it a very isolating diagnosis. As the disease progresses, muscles and joints become tight and stiff including the muscles in the face and mouth. Production of words becomes more challenging as the person with PD has to think through each step of the process to make it happen. If you cannot communicate with other people, your world automatically becomes smaller and closed off.

We have discovered ways to fight this problem. When we are out with other people, I try to make sure that my husband is included in any conversations by turning to him and asking his thoughts or redirecting to something he has done or said lately. We avoid large groups because of the noise and distractions and instead try to focus on fewer people and one conversation at a time. I also do my best to give him the space and time to respond because while his internal processes may have slowed, his cognition and wit haven’t. He has the words, he just can’t always get them to come out in a timely manner. By the time he is able to speak, the conversation has moved on to a new subject and, instead of participating, he becomes an observer.

On the rare occasions when I need to be his voice, we both understand that it’s okay. Those are normally times when he is tired and he will look to me to step in to provide the volume and intensity he has lost. Throughout it all, I remember that if we can control the pace so everyone can take a moment, take a breath, and give him time to engage, the conversation is always enriched by what he has to share.