Modifications, just the word is scary. Will we have to remodel or even move to a different home? What about mobility, will my husband need a walker or even a wheelchair someday? Can we continue sleeping in the same bed or do we need to look at a different arrangement? What about bathing, is our shower safe for him? What is going to come as his symptoms progress and how can we plan for it?

Simplifying your home and your life now can help eliminate many daily struggles and open the door to additional modifications that might come later. If you have access to an occupational therapist through your husband’s medical team, take advantage of them and ask your questions.  I know that I often look for the worst to happen when in reality solutions are much simpler and available. There is also a great tool called the Parkinson’s Home Safety Checklist, put together by the Davis Phinney Foundation and available on their website at  https://www.davisphinneyfoundation.org/landing-home-safety/.

Remember, when you are thinking about modifications, the conversation needs to be with your partner and it needs to be realistic. Make sure that whatever you plan will work for both of you and that you look at all alternatives. Don’t be afraid to try different things before committing to the final solution, you may find a workaround that is just as effective for your situation. And, finally, remember that any modifications are meant to make the journey easier for both of you. Your ability to adapt to the new system is as important as theirs, make sure it works for you too.

Saying no to my husband is difficult and often leaves me feeling that I have done something wrong. A great example is that we were recently looking at a job that needed to be done in the backyard. It was something he used to do and so it was normal that he would expect me to be able to do it too. It was not something I felt I could do yet I had to say “no” several times before he realized that I meant it. I came away feeling like I had let him down and the project is still there. When we can talk about it again, we will come up with a modification or call someone for help.

The “no” extends beyond our home. I am learning more and more that we need to protect what we have. I need to be able to say “no” to requests that are outside of my capacities, especially any that would interfere with my ability to be here for my husband. I carefully examine opportunities as they come up before deciding if it is something I can add to my already full list. Prioritizing, evaluating, and then deciding when to say “no”, it’s all an integral skill I have had to learn as we continue on our journey.

There is a lot of negative energy in the world around us right now and most of it is out of our control. I struggle daily with ways to keep it out of our home as we already have enough challenges thanks to PD. We have discovered a couple of things that make life better and keep us moving in positive directions regardless of outside influences.

One thing that is helping us in these difficult times is to revisit old traditions that brought us peace. When we were first together as a couple, we started our Sunday mornings listening to acoustic music on the radio while we read the paper. We enjoyed the calming sounds and shared laughs over the funny pages. As the years passed, we had lost some of that fun. We are now consciously revisiting that tradition.

We are also actively working to create new opportunities to enjoy each other’s company. We have instituted a new tradition of the afternoon aperitif. We take a short break mid-afternoon for a beverage and a light snack, outside if possible. This moment we take to reconnect with each other is becoming one of my favorite times of the day.

Finally, we are communicating carefully with the outside world in an attempt to limit the impacts. We stay informed on current events without becoming immersed, which can be challenging at times, but helps us stay sane. Our journey continues and we need to keep our positive focus on us as we move forward to whatever tomorrow will bring.

I totally get it, things are moving along smoothly then something happens to disrupt the process. It may be something small but suddenly I start to feel a little frustrated. Things begin to irritate me and it becomes more difficult to move forward. My partner senses things are off and he too starts feeling frustration which impedes progress on whatever we were doing together. Stress levels build as I struggle to get back on track but instead find I am slipping from frustration into anger as tension escalates between us.

Negative stress is like a virus, it spreads quickly and impacts everyone I come into contact with. Unfortunately, that usually means the one who shares my life, my partner. As my stress ramps up, his also rises and it becomes a continuous cycle feeding upon itself. How can we break it, what can we do to keep it from happening?

When I find myself in the middle of a stressful situation, I need to realize what is happening, step back and disengage. If I take a moment for a deep breath and shake out my body, I can come back with a new awareness. Better still, if I can learn to recognize the signs prior to the escalation stage, I catch my own stress before it can reach out to my partner. This allows me to examine what’s happening so I can work to minimize and redirect the energy. Figuring out what triggers me and avoiding those activities can be invaluable as I work to be a positive CarePartner in this journey with PD.

I am signed up to get newsletters from many of the PD programs doing research and get updates about new medications on a fairly regular basis. Recently, a new medication was approved for use during off periods that would give a quick and short-term blast of dopamine to help smooth things until the regular dosage takes effect. This treatment was developed in part due to requests from CarePartners. We shared stories of our partners who were having such a tough time between doses and researchers listened. This is just one more way we can be support our partners by being involved in research that can make a difference for us today.

I like to read about possible new treatments, it helps keep my hopes up. So many people are working every day either for ways to figure out what causes this illness, to make life better, or to find a cure. It is encouraging to know that people care and that positive things are happening. Even the smallest of discoveries may lead to something bigger and by staying informed I feel part of the team that will one day figure this out and win the war against PD.

Click these links to check out the organizations I follow: Michael J. Fox Foundation, the Parkinson’s Foundation, the Davis Phinney Foundation, Parkinson’s Resources of Oregon and SW Washington, and the Pacific NW Parkinson’s Foundation.

As my husband will tell you, patience has never been my strongest virtue, waiting for anything is a challenge for me. So, of course, one of the dominant symptoms of his diagnosis with PD has been stiffness and rigidity which slows down everything we try to do. I get to practice my patience with this disease on a daily, no make that an hourly basis, and I often come up lacking.

Why is it that I remember my failures and frustration so much more clearly than my successes? I can tell you that I was short with my husband at least twice yesterday, for things outside of his control. Even when I don’t say the words, I know my body language can be unkind. What I don’t recall as well are the times when I smiled at him, hugged him and gave us the time needed to finish the task. I don’t remember when I waited patiently or planned extra space into our daily routine, knowing that it would be needed.

I have often said that I was put on this earth to learn patience. As we move forward in our journey with Parkinson’s, I believe that I am especially supposed to learn to be patient with myself. I need to remember that, just as my husband struggles with this diagnosis, I struggle with the role of CarePartner. It is different for each of us but can be equally challenging. I am always attempting to do my best, and that is all I can possibly do. While I may not always be the perfect Caregiver, I can still strive to be the perfect loving Partner for my husband and remember to give myself credit for doing that well.

I cannot take credit for today’s blog and apologize in advance to anyone who might be offended, but sometimes we just have to laugh or we would cry. I googled Parkinson’s jokes and came across these lovely comments, that have been modified slightly to meet a CarePartner perspective. I hope they bring you a smile…

We were getting really bored with our normal day to day life so my husband developed Parkinson’s Disease to shake things up. He tells me that it was tough to detect the tremors at first because he grew up in California and was used to everything always shaking. He is now part of a club for people with Parkinson’s, they have their own secret handshake. What instructions are not needed on his Parkinson’s medicine? Shake well before use.

My husband did share a hilarious joke about Parkinson’s last night, but I don’t want to tell it because he was a little shaky on the details. You know the best thing about my husband having Parkinson’s? I never have to buy him another electric toothbrush. He is thankful that he was diagnosed with PD instead of Alzheimer’s because, as he puts it, it’s better to spill only half your drink than to forget where the bottles are kept.

A friend asked me the other day if I had any advice for dealing with my husband’s diagnosis of Parkinson’s, apparently “just shake it off” wasn’t the right answer. So instead I offer this, may you always keep a smile on your face and love in your heart as you share in this challenging and difficult PD journey.

For these and many more fun PD jokes visit https://upjoke.com/parkinson-jokes.

Whoever said that the small stuff doesn’t matter wasn’t a CarePartner. Sometimes it is the littlest of things that make the biggest of differences in my day. A smile when I wasn’t looking for it, an unexpected message from a friend, the look in my partner’s eyes. A morning when things are going well and he doesn’t need my help getting dressed, it all matters.

Walking alongside someone with a chronic illness can be depressing as we tend to see only the challenges as their disease progresses. In our case, his tremors are more pronounced today or he seems stiffer and is moving more slowly. CarePartners are always on the lookout for the next issue so we can smooth it over and make life better. What if we looked for what’s going right instead of what’s going wrong? What if, instead of worrying about increased tremors, I celebrated those times when he appears to be shaking less? What if I acknowledge that his routine is going well this morning and mention that he seems to be having a good day? How would that change our daily journeys, would it lighten the load for both of us?

My husband knows that I will always be there for him when he needs me, what about when he doesn’t? I need to remember that we are in this relationship for good and bad and learn to acknowledge when it is good. If I can consciously make note of those times when all is going well, I think that it will remind us both that they still outweigh the others and help us recognize all the small victories in this battle with PD.

This is definitely not how I expected life to be when we both retired. We were going to travel and I was going to have time to explore new interests. I was going to write a novel and finally get it published. Life was going to be easy and fun. Then, my husband developed a tremor that shook our entire world.

And so, our plans have changed. Not quite the travels we anticipated, we get to go back and forth to visit his neurologist and other specialists regularly. Instead of writing that novel, I am writing a blog about caring for someone with a chronic illness. The new interests we have developed all focus on PD and finding ways to make life better whether it is through boxing or support groups. And all that extra time I was going to have? I spend it doing work around our home, chores that he once was able to do, or helping my husband with his daily living activities.

Yes, I do miss the carefree man that I married and yes, I do wish he had never been diagnosed with this illness. There is a sadness deep inside, a piece of me that grieves the life we might have had and wonders where it might have taken us. I miss his easy smiles and quick wit. Yet, I know that he is still here with me. So, on those days when I am feeling particularly nostalgic for what might have been, I take a look beyond the PD at what we do still have and find the love. We are still here, we are still moving, and we will keep on fighting this disease together. As I grieve for what might have been, I will rejoice for what we still have and look forward with an open heart to new opportunities we will share in the future.

For more on dealing with your feelings of grief check out this article entitled “Grief and Loss” on the Family Caregiver Alliance website.

There are many ways to help others, one of the easiest is attending a support group, whether virtual or in person. While most people normally join to find support for their own needs, the group also provides a common understating that we are not in this alone. I know that when I attended my first PD group, it was the many smiling faces around the table that brought a sense of belonging to my soul. The guest speakers were just icing on the cake.

Another way to help others is to participate in research as a member of a study group. Many programs are for People with Parkinson’s only, but the Michael J. Fox Foundation has a program called “Fox Insight” and they need people without the disease as well. I have been actively participating in this project for several years now and I hope that I may be making a small difference for someone else down the line.

Finally, reach out and be a friend to someone else. Listen to their story and share some of yours. You never know what struggles they might be facing nor the impact you can have until you open your heart and give it a chance. Our journey as CarePartners can be lonely if the only person we interact with is our Partners, find someone new to share it with today.

For more information on research programs visit “Your Role in Research”  on the Michael J. Fox website or “Patient Engagement” through the Parkinson’s Foundation.