I have known of Parkinson’s Disease for about 30 years now. My father was diagnosed with it and I tried to help my parents as he struggled with severe cognitive and physical symptoms. I felt that desperation when, no matter what we did, the illness progressed and he passed away in just a few years.

When my husband was diagnosed with PD we were somewhat surprised but also thankful to have an answer for his tremoring. Unfortunately, as his symptoms progressed, it became so much more. We found that Parkinson’s could easily take over our lives with a strict schedule of medications, medical appointments and exercise programs. Someone once asked me why we didn’t just forget about it for a while; if only it were that easy.

Instead of forgetting about it, we are learning to live fully with it. We have accepted that Parkinson’s is going to be with us for the rest of our time together so we might as well make the best of it. My husband is open about how he is feeling and we build our days around his needs. After all, can’t we all learn to enjoy a nap after lunch? And we continue most of our activities, albeit at a slower pace, which makes us appreciate them more. We have decided that this disease will only limit us as much as we allow and we are not going to allow much!

I wrote this originally thinking about how important it is to let my husband do as many of his daily activities as he possibly can rather than stepping in to help. It has taken new meaning for me recently and I wanted to share. He has been struggling with balance issues and I have been trying to help him but realize today that I need to step back and let him work it through.

When he first mentioned the problem, I jumped in and asked one of our exercise coaches for suggestions of things he could do at home. She was able to send us an email with exercises she thought might help, he did them once because I was standing there directing him. At my insistence, his neurologist sent him to a physical therapist who gave him a series of exercises. Again, he has not really bought into them and is not doing them. In fairness to him, he does have a sore knee which may explain his hesitance to start a new routine.

It is tough for me to let things be. I have been trying to take the lead on this and I need to remember that he is the one with PD, he is the one with balance issues, not me. There may be reasons he chooses not to do the exercises that I am not aware of, I need to respect his choices and let him figure it out. It is a time for me to step back and simply love him as he works his way through.  

I am so grateful for every day that I get to share with my wonderful husband, he has brought so much joy to my life and has helped me grow as a person. Parkinson’s Disease has brought new challenges, but it cannot take away the many good things still happening or the love I feel for this man. Having said all of that, there are days when his PD makes life difficult for both of us and the struggle can cause stress in our relationship. Let me tell you about the other day.

My husband has good days and bad days and it is usually obvious which he is having. Tuesday was a bad day, he was tired, achy and just not himself. When this happens, he tends to shut down, doesn’t want to do anything even have a conversation. He will still participate in his on-line exercise groups, he has a responsibility to them, but nothing with me no matter how hard I try. It gets exhausting as I attempt to be the cheerleader and make life lighter for both of us until I finally give up and the house gets really quiet.

Then I remember that we have lost three friends from our PD group in the past year. I think about how their partners must be feeling and am suddenly aware that whatever kind of day we are having, at least we are both here and able to share it. That’s where I find my positive feeling for the day and am overcome with gratitude. Good or bad, may we have many more days to share before PD finally wins the battle.

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.