I don’t know exactly where this saying comes from, Google said it refers to poor housekeeping techniques from the early 1900’s, but definitely came home to rest with me recently. I am hyper-vigilant about my husband’s PD symptoms, but when I developed a suspicious bump I went into total denial and thoroughly swept it under the rug. It took me a month to mention it to my husband and then another month before I called my doctor and set up an appointment. It turned out to be a cyst and she recommended keeping an eye on it but otherwise it should be fine.

One of my biggest challenges is taking my self-care seriously. I know all of the stuff about how important it is that I stay healthy to be here for my husband, but I still try to sweep it away and move on. I had a rash last year and, by the time I realized I should see a doctor, it had started to clear up and the dermatologist was unable to determine what caused it. My worry about what happens to my husband if I get sick should spur me to seek treatment but instead sends me running in the opposite direction. I seem to think that if I ignore my own issues long enough, they will go away and I won’t have to deal with them. 

It is time for me to accept that I am aging along with my husband and that things are going to happen within my body. I need to remember that while I need to be healthy to care for him, I also need to be healthy just for myself. It is so easy to pretend all is well, it is more difficult to be open and make sure all is well. Instead of sweeping things under the rug, I will actively work for wellness in my life and will do what it takes to maintain it.

The changes that PD has brought to my husband have been slow and subtle. It isn’t like one day he was able to run a marathon and the next he was stumbling, it is like one year he walked 2 miles and then a year later it was only 1. The tremors and the stiffness all invaded him gradually. I struggle now to look back and see when it all really started but do know that this slow decline began long before his official diagnosis. It is no wonder he may not have always been aware of the challenges because they crept up on him so slowly.

So, how do I support him when he is not aware or accepting of all that is happening? The first thing I need to do is be sure and communicate with him. Knowing that he has Parkinson’s and that it can bring a wide variety of changes helps somehow. When I see him doing something out of his normal, I can call him on it. It may not be easy to talk about, he may deny it at first and it may take more than one conversation. Once he accepts that the challenge exists, we can be open about whatever it is and usually blame it on his diagnosis. Then, we can look for a solution.

Sometimes the solution is simple acceptance, other times it may involve an intervention or professional help. The most important thing I need to remember is that Parkinson’s Disease has brought these changes and new challenges to our lives, it is outside of his control. Then I simply need to find patience and understanding to make sure we can both live our best lives everyday. 

Spring is here and with it come thoughts of gardening. We have had a small garden almost every year for as long as I can remember. It used to be a joint project, my husband helped prep the soil, plant and harvest. As his PD symptoms progressed it became more and more difficult for him to participate until last year it was all mine. It was a lot of work and, while I enjoy the fresh vegetables, was it really worth it? How would I spend my summer days if I didn’t have to cultivate, weed, and water?

As I stop and think about it, I realize that some of the things I am doing come from a sense of obligation, a “we have always done that” or “my friends do it” or “it’s good for me to stay busy”. If I plant a garden, I have to do the work whether I like it or not and the truth is that I really don’t like it that much. There are other activities that I could fill that time with and would like a lot better. Why keep doing something just because I always have when I could be choosing to do something new and more fulfilling?

Personal self-care matters and sometimes that means making decisions for your Person with Parkinson’s, but more importantly it means making decisions for yourself. As I move forward, I am going to try to stop making choices on what we have done in the past and look honestly at what I can do in the future. I will use realistic expectations of my own abilities and consciously create a home where both of us can meet our own needs in ways that bring us pleasure. Now, what do we do with those garden boxes out back?

Since his deep brain stimulation surgery, my husband has started having problems swallowing and I don’t know how to help him. But then, it is not my job to know, my job as CarePartner is to encourage, support and love him. What I can do is try to learn about what might be causing the difficulties and then talk with him and his neurologist regarding potential interventions. I don’t need to become a Speech/Language Therapist, I just need to make sure he is treated by one.

People have been fighting the symptoms of Parkinson’s for centuries. The tremors, balance and swallowing issues may have gone by other names but have been just as problematic. The good news is that, thanks to all those folks who have gone before, we have access to lots of information and a better understanding of how to face the challenges. Often there are anecdotal stories from others with the illness and useful tools that can provide relief.

I have done my research on swallowing and we have scheduled appointments with a Speech and Language Pathologist and to have a swallowing video done. In the meantime, I will stay close and encourage him to slow down when he drinks, gulping can be a trigger. We will continue the voice and movement work we are already doing and find ways to live well in spite of this new challenge.

If your loved one is facing swallowing challenges, check out this helpful post Swallowing Changes on the Parkinson’s Foundation website.

Today is my birthday. I don’t always write in such a timely manner, but this is different. It would be easy for me to ignore the date and just continue on with our normal everyday stuff, but as things with my husband’s PD get more intense, I think it’s essential to acknowledge and celebrate my life and my journey. I like to “do things” rather than “get things” so we will start with dinner out, we have a reservation for this evening.

Before PD became a third wheel in our lives, we would have marked the day with a weekend getaway. My husband loved planning those and then keeping it all from me until the last moment. He would drive me there, sometimes taking a circuitous route to ensure the surprise once we arrived. It was always great fun and I am so thankful we have those adventures to look back on.

For the past few years, we have been sharing our birthday outings. His birthday comes about 5 weeks after mine so we sit together and plan a short trip somewhere. Last year we worked together to create a unique experience of an overnight stay in a tree house where I got to try zip-lining for the first time. It was amazing. This year’s plan involves an overnight road trip and visit to a winery we both like, who knows what extra adventure we will find before heading home?

There may be changes that they don’t recognize, but we will. I read a story recently about a CarePartner who noticed a change in the way her partner smelled, a musky odor, and she is now working with researchers to find if this could be a test for early signs of PD. It’s amazing what a Partner will spot that the Person with Parkinson’s may not notice for themselves.

Speaking of smell, not only can PD make someone’s body smell different, it can also mess with their ability to smell things around them. My husband’s choice in foods has changed over the past 10 years and I am sure it is because his sense of smell and taste have been impacted. His voice and visual acuity are also being challenged as the musculature that controls both of these activities reacts more slowly and at times feels disconnected to his brain. I am not sure whether his body is no longer able to keep him warm or if another PD disconnect constantly tells him he is cold, but I find he is either turning up the thermostat or adding a sweater even on warmer days.

When I see something new or different in our day, I try to provide non-judgmental feedback to him remembering that he may not recognize what is happening at all. I also try to make sure that we discuss all changes, no matter how small, with his Neurologist and PCP. Changes will happen and we need to be on the same page so that we can try to understand the causes and work to minimize the impacts whenever possible. He can’t address a challenge that he isn’t aware of. If I make sure to let him know I’m seeing something new, then we can face it together.

To read more about this study visit Musky Smell and Parkinson’s Disease | Psychology Today. To learn more about the unusual PD symptoms visit 10 Lesser-Known Parkinson’s Disease Symptoms | Parkinson’s Disease (michaeljfox.org).

We recently set off on an afternoon drive to a small town close to us. Fifty miles later we were in a totally different location but, thankfully, we were still able to find our way home. It turned out to be a different adventure than we had anticipated and yet it still brought us back to familiar territory without too much distress.

The thing I sometimes forget about Parkinson’s Disease is that you can never really know exactly where it will lead. Things have been moving along well since my husband had DBS surgery and then he falls in the front yard, something that hadn’t happened ever. Or, he is having a drink of water and ends up choking, again a new issue.

We thought having the surgery would have a positive outcome and for the most part it has. We didn’t really prepare for the other things that might come, the balance issues or problems swallowing. We are working through those now with speech pathologists and physical therapists and hope for some relief. What we have discovered is that regardless of the treatment, my husband still has PD and it will always be a presence in our lives. We can choose to live with it and still find ways to enjoy the adventures and detours. We may feel lost at times, but we will always know how to find our way home.

As my husband’s symptoms progress, I am being asked to take care of more around our house. Often these are things I have never done before and really have no idea how to do them. A case in point, I recently had to troubleshoot a problem with our dishwasher.

When I face a new challenge, I have a tendency to jump right in and have bungled things up in the past so decided on this occasion to try a smarter approach. Instead of simply starting to take things apart, I talked it over with my husband. He suggested checking the appliance manual, which we found on-line. Armed with this information, he stood by while I went to work. He has become the supervisor, helper, clean-up crew and I got to be the technician. We removed and cleaned filters and found a twist tie that had gotten into the lower drain. I removed the item and, with my husband’s help, I was able to put it all back together with no leftover pieces. We were back in business!

Life is so much easier when the challenges are shared. I sometimes hesitate to talk with my husband because I don’t want him to feel displaced when I pick up one of his chores, however, I may need his advice since he has experience and ideas on how it should be done. We may disagree on the approach to a task, but at least we have both given our input and neither of us is carrying the load alone.

I sometimes think that Parkinson’s Disease is a jokester because while it is slowing my husband down, it has sped my life up tremendously at times to make sure everything is done. That is why it is essential for me to stop, take a deep breath and be fully present whenever I can. Granted I may find myself fully present and knee deep in laundry or in the middle of cutting the lawns, but wherever and whatever I am doing, I need to know that it is okay.

While I may not always be able to see what is happening, my husband does. He recognizes the extra effort I am putting out and encourages me to slow down or to let things go. I was working on a project out front yesterday and had just finished when my husband asked if I would like to join him on the patio. He had brushed off our garden swing and put out the cushions. It was amazing to sit there together and enjoy the first sunny day in a long time.

I know the work I do is important and keeps our home life going, but at the same time I need to make sure that I am engaged as part of that home life. It is easy to become a housekeeper, cook and caregiver, I don’t want that. I want to be a CarePartner, aware and loving in all I do to support my husband as we move forward together on this journey.

I am beginning to think that my husband’s brain is working harder than ever thanks to PD. The circuitry that used to handle the day-to-day actions of living has gone haywire and now every move has to be thoroughly thought through. In an effort to better understand the challenges he faces, I turned to the American Parkinson’s Disease Association website where Dr. Jennifer Goldman from the Department of Neurological Sciences at Rush University Medical Center writes “Executive dysfunction is one of the most common cognitive changes reported in PD.” She goes on to say that this disease and changes it brings to his brain can interfere with my husband’s ability to plan or organize his day and multitasking or even just changing from one task to another becomes difficult.

It doesn’t stop there, working memory and visuospatial functioning are often impacted. The struggles my husband faces trying to do daily tasks? That’s because his working memory doesn’t retain the needed skills as well anymore. His visuospatial functioning can be impaired which causes an inability to accurately judge where his body is in the world around him and creates balance issues.

What can I do to help? First, I need to make sure that his neurologist knows what is happening and advocate for cognitive testing to check for signs of decline. There are medications that might help, but the most effective tool we can use is the same as the one for physical challenges, he needs to exercise his body and his mind. He needs to move his body and work his brain so that the neurons know what to do and can keep on doing it. Puzzles, games, reading, yoga, boxing, walking and talking are all great activities to stave off mental deterioration and help keep us both active and alive and in the battle with PD for another day.

To read more on this fascinating topic, click here to check out Dr. Goldman’s entire article entitled Cognitive Changes.