We went to an 80^th birthday party today for a friend. It was designed as an open house, come and go as you please. This works best for us since we can never be sure what kind of day my husband is going to have, and the flexibility allows us to participate as much as possible. There were about 20 people there, a comfortable number for the space, and chocolate cake. (Yum!) We got to visit a bit with the birthday boy and his wife and met some new people as well. We had one glitch when my husband needed help getting up from a chair and I wasn’t close by, but he managed. It was a great opportunity to be out and about without any expectations other than socializing.

We don’t go out as much anymore and I sometimes feel that loss. My husband tires easily and I worry too much about what might go wrong which always impacts our social adventures. It takes us more time to get ready these days. Then we go and find that we spend less time out than it took to prepare. I have to admit that there have been times when I declined invites because thinking about the effort can be overwhelming. I need to stop thinking so much and start doing more.

If I approach outings with a positive attitude, we can both enjoy the experience. Yes, it may take more time to get out the door but it is definitely worth the effort. Any interactions we can be part of expand our world and give us a different perspective on life. Isolating at home is debilitating, connecting with others is invigorating. My husband may not engage in conversations as easily as he once did, however he needs the opportunity to try. And, if I can keep an eye on how things are going, I will see where he needs help and signs when he has had enough. We may only be there for 30 minutes, but that is 30 minutes of intensive engagement in a social setting, an informal therapeutic intervention neither of us can get at home.

When my son was young and learning about making decisions, I was taught to only give him a couple of choices and to make sure that both choices were things that were acceptable to me. As my husband’s disease progresses, I see that this same principle may apply for a couple of reasons. First, Parkinson’s Disease slows the processors in my husband’s brain. He struggles when asked to do two things at once and, I would assume comparing and contrasting multiple choices would be just as difficult. My second reason is more selfish, I usually know the outcome I hope to achieve, therefore I just need to present it to him in a way that makes it agreeable to him in the moment.

Let me share an example. We have been talking lately about how important it is for him to get outside and get some fresh air. Yesterday was a sunny afternoon and seemed to be a perfect opportunity. I made the mistake of asking him if he wanted to go for a walk. I could see the “no” in his eyes when I quickly realized my mistake and said instead, “Would you like to go for a walk to the stop sign or do you want to try for the little library today?” We both had a good laugh and then  wound up taking the shorter of the two walks.

PD has taken much of my husband’s control away from him. I want him to still be in charge of as much as is possible and giving him appropriate choices allows for that. Communicating effectively on my part can help him make positive decisions for himself and can alleviate some of the load for us both. Yesterday’s interaction could easily have turned into a disagreement, an argument, or simply a failure where I was disappointed and he didn’t get the exercise we both know he needs. Instead, by revising my initial question, I was able to encourage him to make a positive choice for himself. We were both rewarded with a nice walk in the sun.

The thought of downsizing always puts me in mind of my husband’s mother who moved from her house into a senior community. She started out in an apartment, then moved into assisted living and even a nursing facility as she aged and her needs changed. All were in the same location, within blocks of each other. She never lost her community connections and the staff helped her through all of the transitions. It was especially valuable for us because she lived over a thousand miles away and we couldn’t be there to help or visit as often as we might have liked. 

My mother also moved into senior housing a few years after Dad passed and when she couldn’t manage on her own anymore. It was a good placement for her as she found companionship and support. There were people who would do her laundry, clean her apartment and prepare healthy meals for her. She was able to participate in activities with the group and there was a small outdoor space where she could help care for the flowers. It was a safer alternative to living alone in a single family home. There was even a nurse on-site for emergencies, it was a very good fit.

The idea of moving out of our house is terrifying because we have been here for over 20 years. I have to admit that sometimes it would be nice to have someone else taking care of things. Then I look at the huge senior facilities being built in our community and am reminded of beehives. I picture the residents as queen bees and the staff as their workers. There doesn’t seem to be any space for privacy or individuality. Perhaps that is an okay trade-off, but would it work for me? What about those days when I just want to hang out in sweats, would I fit in?

Am I, are we, ready for a change? I don’t think so, not yet, but the day may come’. I need to keep an open mind about all our options. We never know where my husband’s diagnosis will take us, the day may come when a hive is the right fit. And my husband says I’d make an awesome queen bee….bzzzz.

We had opportunities to celebrate a birthday and my son’s anniversary both within the past week. It has been nice to be with friends and family as we mark milestones. As I age, I am reminded of the importance of celebrating every day we have together. This is also brought home to me as I watch my husband’s abilities change thanks to his diagnosis of Parkinson’s Disease. We just can’t do some of the things we used to do, and I wish we had done more while we still could.

Rather than think about what we can’t do, which leads me down a dark road, I like to think instead about what we can do to make sure each day matters. Being retired gives us a lot of time together and we want to do our best to keep that time pleasant. We greet each other every morning with a kiss and an “I love you” and end each day in the same way. Breakfasting together gives us a chance to read the newspaper and look forward to our day. We make time every afternoon for an aperitif, a light snack often accompanied by a small glass of wine as we check-in to see how our day is going. It’s a small yet meaningful celebration we do each and every afternoon. We dine by candlelight in the winter months and make toasts to something that has happened in our day. Every day has a purpose and a name, grocery shopping happens on “WinCo Day” and we try to pick up something special for lunch as a reward for completing the task.

We didn’t expect to be dealing with PD in retirement. We could let it take over and control our days or we can take control back. Too many of my friends have lost their partners, I still have mine and want to enjoy whatever time we have together. All the things we do may seem silly, but they help us stay on a positive track. Celebrating everything, no matter how small or seemingly insignificant, makes our days lighter and our journey with PD easier. I will celebrate during good times, celebrate during bad times, rejoice all the time simply because I still can. 

My husband is an absolutely amazing man, something I may not tell him enough. I watch him struggle daily with PD and wonder how he does it. I wish I could be as strong. On the other hand, that doesn’t mean that he can’t also be a bonehead at times. This disease brings cognitive and physical issues that are outside of his control, and I try hard not to get upset with him about those things. However, when he does things that have nothing to do with his diagnosis and that would have made me angry before Parkinson’s, it’s okay for me to get mad. I first need to make sure that I am differentiating between the two and then, if he is doing something boneheaded, I let him know how I feel. 

Everything he does these days is flavored by PD so it can be difficult to know when I need to be angry with him rather than the disease. However, it is not Mr. Parkinson’s whiskers in the sink after shaving. It is not his disease that leaves dishes in the sink or waits until I have settled down to take a break and then asks me for something. It is him who conveniently forgets he has PD and tries to do something we both know he shouldn’t. These may seem like minor indiscretions, but when added to the pile any of them can be the one thing that breaks me. In those moments, it is okay for me to say something before it becomes too much.

Saying something in anger still needs to be positive for both of us. This is difficult because opening those doors can lead to floodgates. I have to work to temper my upset with humor or love. Sometimes it helps if I show him what he did that bothers me, other times I simply have to give him a look. These are the times when I let down my protective filters. We both let the disease go and become us again, warts and all. Perhaps I need to learn to treasure these moments when there is no PD, just us and it is very real. That just doesn’t happen enough these days.

I can hear it now, my husband saying, “wait a minute, what makes you think I don’t get angry and frustrated?” My answer to him is that when you have those feelings, you are allowed to express them. When I get them, I am expected to blame it all on the disease and get over myself. I am not allowed to show anger around him because it is not his fault, so I get to stuff all those feelings away for another day. I am reminded of the statement, “it’s not the person, it’s the disease.” Well, sometimes it is this person, his CarePartner, feeling the anger. Living in denial is not necessarily a healthy way to deal with negative emotions.

I get so frustrated when it takes him longer to get ready to go out that I often just choose to stay home instead. I get angry when he doesn’t engage in things with me, even normal conversations have become a challenge. It upsets me when I don’t get to do things because he doesn’t think he wants to or it sounds like it would be too difficult. It really bothers me when we spend money on mobility aids that he won’t use. There are times when I turn around and he is there and I just want to scream because I need to do something, and he is in the way. It makes me crazy to feel all these mixed emotions and then have to stuff them away.

My husband reads all my blogs before they are posted and I can imagine that this one may be difficult for him to understand. I love him so much and yet still these negative feelings exist some place in my mind. I have learned to accept our situation, set aside my feelings for the most part, and save my expressions of frustration and anger for my writing. It is good to have this outlet, otherwise I don’t know what I would do with all the negative energy. I can’t let it drive my days so I will keep writing about it and remember to focus on the positives. Look to what is going right, not what is going wrong as I strive to keep calm and CarePartner on.

My husband’s diagnosis of Parkinson’s Disease brought some new mantras into our home. We now live with the understanding that “It takes twice as long to get half as much done.” and “The hurried-er I go, the behind-er I get.” I found my mantra the other day on the internet. It read “I had my patience tested. It was negative.” Trying to be patient in the midst of all of the changes we are going through is one of the most challenging aspects of being a CarePartner for me. Let me give you an example.

My husband has always been the one who arrived early to every meeting whereas I would cruise in just on time. Since his diagnosis, things have completely flip-flopped. He now has to depend on me to get him places on time and it sometimes doesn’t work in our PD dominated world. We were getting ready to go out the other day and I was in my usual mode of running just on time, when my husband reminded me of a saying, “the hurried-er I go, the behind-er I get.” As he struggled with his coat, I stood there wondering how I could speed things along. We finally got out the door but were late to everything for the rest of the day. I was put off schedule in that one moment and couldn’t ever get back on track. It finally hit me, I didn’t need for him to hurry, I needed to plan better and find patience. We seriously need twice as long to get ready to go as we did before his symptoms progressed to this point.

My husband can easily spend more time getting ready for a chore than it takes to do the chore itself. Perhaps that is why I find myself, as CarePartner, wanting to step in and do more of those things every day. Instead I stop, take a breath, and remember that the little chores are important because they support his abilities and sense of being. He needs to continue doing things for himself and for us, and I need to be patient so that he can have the time and space to complete them. As he says, “It takes twice as long to do half as much with PD”. I just need to practice patience as I stand back and let him get things done. PD is his challenge, patience is mine. Thank goodness he’s doing a much better job in his battle than me.

Spring is finally arriving and that always means new things for me to do. I love to be outdoors, just not necessarily gardening. I also have windows that need cleaning, a patio and driveway that need power washing, all necessary tasks when preparing our home for the coming season. It makes me tired just thinking about it, let alone getting any of it done. My role of CarePartner keeps me pretty busy regardless of the season, something I really need to keep in mind as I start trying to take on more. Perhaps that’s why, when faced with the choice between buying a new garden hoe and hiring someone to take care of it for me, I chose the latter.

I won’t give it all away. The bigger jobs like spring clean-up of the flower beds and mulching in the front of my house would be best done by a professional. I’m also having someone else cut my lawns. I will take care of the back garden beds myself, perhaps grow a few vegetables and flowers. I have a solid plan for what I can do and what I need to let go of this year; I just hope the plan works.

The advantage of having someone helping out on a regular basis is that if at any time I realize I have taken on more than I can handle, I can simply ask them to take over. This also works as a safety plan in case something happens to me or my husband and we need an assist in an emergency. Having an established relationship with helpers is essential in times of crisis. This spring I am looking carefully at what I think I can and want to manage myself. I’ll let the professionals take care of the rest.

I love Cirque du Soleil shows, we have seen several and they are always great fun. This year, for my birthday month, I purchased tickets for their travelling show 6 months in advance to be sure we got to go. It was a wonderful gift to me. I was telling my husband about it when the reality set in. This was going to be a challenge.

First let me say that I don’t like to drive in city traffic and these shows are very popular. Lots of people means lots of cars and parking garages to deal with. We would be in an auditorium setting we have only visited once or twice before, and it has been years. What barriers might exist in getting my husband to his seat? The time frame was not good, the show starts at 1 pm which is in the middle of napping. Added to that is the fact that it is on the first day of daylight-saving time, how would that change in schedule impact us both? The “what if’s” of things that could go wrong kept growing in size until I was on the verge of canceling when common sense and reason finally returned.

We are not the only people dealing with disabilities who attend events at this space. I looked on-line and made a couple of calls to learn about their accommodations. I invited my son and his wife to join us at the show and they happily agreed to drive. I had a conversation with my husband around what our schedule might need to look like on the day of the show and we put a plan in place.

I would like to say that all of this planning alleviated my stress but I would be lying. I was awake the night before the show wondering what could happen and envisioning the worst. I am happy, however, to report that the event went off without a hitch. We found parking within 50 feet of the ADA entrance. We waited there just a few minutes before a wheelchair attendant arrived to take us to our seats. After the show, another person was there to help us back to our car. The afternoon turned out to be so much better than I had expected and we both had a great time.

I regret the time I spent anticipating what could go wrong and am so thankful that I didn’t let my worries overwhelm me. This experience shows me that we can still live life fully if I let go of my protectiveness and anticipation anxiety. Life can go on, it can even be great if I just relax and let it.

Misdiagnosis, missed diagnosis, premature diagnosis, just some of the things I have witnessed in our journey with PD. We personally have experience with misdiagnosis. My husband’s tremor was labelled Familial Essential Tremor for years before he was referred to a neurologist who realized it was actually Parkinson’s. In my father’s case, his diagnosis was missed. His family doctor apologized to him for not seeing the signs, as he put it, at least 10 years earlier. And, we have many friends who are prematurely diagnosed with PD only to later learn that they actually have something else, and often more serious. There are several neurological disorders such as Multiple System Atrophy that are similar in symptomology but different in progression and treatment.

How did a neurologist finally decide that my husband had Parkinson’s Disease? There is no definitive bloodwork that can be done. There is a test called a DaTscan, similar to an MRI, that looks at the brain’s dopamine system, but it is expensive and normally only used to verify a diagnosis. In my husband’s case, the doctor looked at him, watched him walk and then told him he had PD. To confirm the diagnosis, he was prescribed carbidopa-levodopa. The doctor said that if the medicine worked, we would know for sure he had the disease.

There are many exciting research projects out there looking at everything from early detection through facial cues or sense of smell to genetic biomarkers that indicate propensity for a PD diagnosis. Until we can better understand the brain, however, the best tool is still going to be that personal, one-to-one visit with a neurologist, preferably a Movement Disorder Specialist, who is trained in recognizing the symptoms. We can’t blame the doctors if they are confused and miss or mis-diagnose because they are only working with the tools they have available at this time. Let’s hope it gets better soon.

Visit How Parkinson’s Disease Is Diagnosed | Johns Hopkins Medicine to learn more about what is currently being done. Visit the Michael J Fox Foundation and initiate a search for research into early diagnosis to see what may be coming soon.