My husband’s concept of where he is in relation to the world around has changed over the years. This is called a visuoperceptual deficit and is fairly common with Parkinson’s Disease. What I recently realized is that his perception of his own body has changed too. Nerve endings don’t seem to be connected to neural networks in his brain anymore. That means he doesn’t realize there’s something stuck to his fingers or face, his skin has become a stranger to him. Even when I try to clue him in he still doesn’t feel anything, but will try to clean it up. It’s a challenge he faces that I never considered before.

This is concerning because he doesn’t seem to relate to minor injuries either. He often has bruises or scratches and has no idea where they came from. Unless they are actively bleeding they don’t seem to bother him. I have to think they must hurt, but pain signals get lost on their way to receptors in his brain. Or perhaps the feelings get lost in interpretation or are too difficult to express. I’m worried this could lead to something more serious but am not sure how to address it other than calling it out whenever I can.

This is a man who has always paid close attention to how he looks. Now I find myself reminding him to wash his hands or helping him clean his nails. He seems to be more in a cerebral existence, caught up in his head rather than relating to the external world. So, I will be his monitor and do what I can to help him remember to take care of those things that have to be done to stay healthy. Our “normal” has changed again.

This is so true and something I see playing out on a daily basis. My husband’s doctors are only able to tell us what might happen, none of them can give us a clear picture of what is ahead. We get up each day wondering what new challenge might appear and what it will take to overcome it. I am learning to simply be grateful that we have those new days, many of our friends haven’t been as lucky.

When we first talked about getting in-home care a nurse came to our home to do an assessment. She asked questions about activities of daily living, things that I might need to help my husband complete. Many were things that I did without even giving it much thought. Then we got to meet with a local agency representative to create a plan of care for my husband. These two visits were clarifying as we realized that we might be further down the road in our journey than we realized.

Neither of us expected our lives to turn out the way they have yet we are still thankful to be “on the green side of the grass” as my husband puts it. What has helped me most has been keeping an open heart, an open mind and giving our best effort when faced with new challenges. No matter how difficult, we’ll find a way through. After all, that’s all we can do.

I am contacted annually by my husband’s long term care insurance plan to see if he still qualifies for services. I know it’s their standard procedure but it’s crazy! Each year I remind them that Parkinson’s is a chronic and progressive disease and that if they qualified my husband for services last year there shouldn’t be a question whether he qualifies for the coming year. The insurance company representative seems to think that maybe he has had a miraculous recovery? This is just one example of what I encounter when interacting with people who haven’t lived with someone who has Parkinson’s. They just don’t get it.

I wish they were right. I would love to wake up tomorrow and hear my husband in the kitchen making us breakfast. After breakfast we would go out for a drive, with him at the wheel of course, and maybe stop along the way for a hike. We’d be busy doing chores together in the afternoon before going out for a nice dinner. Then home for a quiet evening of games and wine. He wouldn’t need my help with anything and life would be so much simpler.

Unfortunately that is not the life we have been given. So, when someone questions the diagnosis or tries to recommend an alternative pathway, I simply tell them that my husband has a team of specialists and we will run their suggestions by them at his next appointment. When they ask how I manage the daily challenges, I tell them being grateful my husband is still here and in my life makes it easier to tackle any tasks his PD presents. Parkinson’s is a difficult road for both of us but there are many others that would be much worse. I tell them it’s okay, I’ve got this, secure in the knowledge that I actually do. And I forgive them for their ignorance.

The persona that my husband presents in public is not the person I see at home. We went out to lunch with his son a few days ago and he was able to tell the waitress what he wanted to eat but then he basically shut down. My stepson and I had a good conversation while my husband sat and watched. I did try to draw him out a couple of times but it didn’t work. He told me later that he can’t eat and talk at the same time, I understand that. I’m not sure why he couldn’t engage before the food came?

I so wish that everyone had the same opportunity I have to see my husband at his best. When we are at home alone and he is relaxed, we do talk and enjoy each other’s company. He doesn’t mind if I have to ask him to repeat himself and I remember to go slow to enable communication. When we go out, even when we have guests in, this dynamic changes. He only lets them see his challenges, not the successes that come along with them.

I know that being around others bring added stress and that stress exacerbates his symptoms. I know that strange environments bring additional complications. It frustrates me when I have to be his mouthpiece and buffer to the world. It also frustrates me when I know he has opinions but he waits for me to express them. He has always been the smartest and wisest in the room, I just wish others were able to still see him like I can.

When my husband was diagnosed, we both went through a time when we were trying to figure out what this really meant. A lot of that first year involved questioning the doctors and looking for answers that weren’t available. Accepting that my husband actually had this disease was difficult for me because I had seen what it did to my father and I wasn’t seeing any of that now. I finally came to realize that is the nature of this illness, no two people with it will look the same. That was the beginning of understanding what was happening to us.

I didn’t realize that accepting his diagnosis was just the first step on this journey. So many things are changing as his symptoms progress, we have opportunities for new acceptance on an almost daily basis. He has had to accept limitations to his physical abilities thanks to his tremors and stiffness and I had to accept a shift in tasks to compensate. He had to accept that it was time to retire when his voice and tremor got in the way of him doing his job. I had to accept that it was time for me to retire when it wasn’t safe for him to be home alone all day. Then we had to accept that he shouldn’t be driving anymore, and I had to accept the role of chauffeur. Those are just a few of the more extreme examples.

With each step of this journey there have been challenges that impact how we live our lives. We wake up every morning wondering will this be a good day? And we accept whatever Parkinson’s has decided to give us. We accept, but that doesn’t mean we don’t fight back. Exercises, PT, Speech, and continuing the battle because acceptance is one thing, allowing it to slow us down, that’s just not going to happen.  

One of the things that I miss are the long detailed conversations we used to have. Sometimes about intense topics, other times nonsensical stories we created just for fun. We bantered so much at work we earned a nickname for it. Whether silly or serious, this was an important component of what brought us together as a couple in the first place and Parkinson’s Disease has put a real damper on it.

Talking is tiring for my husband and conversations move much slower these days. Thanks to his diagnosis, he has to stop to process my comments, then figure out his responses and remind himself how to get them from his brain to his mouth and out into the world. It’s a real challenge when what was once the simplest of tasks becomes so monumental. His PD messes with his autonomic systems and nothing happens automatically anymore.

We were at a meeting with his Speech and Language Pathologist this past week and she told us to keep trying to converse. The skills my husband learns in his sessions with her are meant to transfer into real world situations. He needs to practice talking with me so that he can talk with strangers when he goes out. She suggested that we try for one dialogue daily and not at meal time, because he needs to focus on swallowing at that time. It’ll be interesting to see if we can bring back some of the crazy conversations of the past, but I’m willing to give it a try. Who knows, it might remind us of better times and give us even more to talk about. 

Other than a myriad of appointments, our daily lives have become somewhat routine. It’s a necessary process that helps keep my husband’s Parkinson’s symptoms on track, yet I find it also becomes a bit boring. An unyielding medication and exercise schedule defines our days. Our meals are at set times usually followed by a rest or quiet period. There is no room for spontaneity and even planned outings are based on appropriate times when he should be feeling his best.

There is not a lot of fun to be found in the challenges of Parkinson’s Disease so we try to joke whenever we can. A few examples are mimicking turning off the faucet that is his runny nose, singing songs while I help him in the shower, dancing with him during exercise class, or eating dinner by candlelight so he can blow out the candles to build up his lung strength. We’ve renamed our daily tasks like helping in the bathroom to include “tidy up”, or “white glove service”. When helping him get seated at a table, I am “scootching him in”, and one of my favorites is “unexpected cuddles”. In the midst of assisting him I come in for a quick hug or drop a kiss on his forehead.

The tasks I am getting to help with these days are quite a change for both of us. I want to do whatever I can to help him maintain his dignity and normalize the activities. If calling them by silly names or finding the fun wherever makes it easier then so be it. Anything to lighten the mood and make life with PD more tolerable for both of us.

My most difficult days are those when I feel like everything is out of control and I can’t see a way forward. It may be that something has happened to the house, it may be that something has happened to my husband, whatever it is the event has pushed me to the edge. Somedays it doesn’t take too much. For example, we learned that we are going to have to change our Medicare Advantage Plans yesterday. That definitely threw me out of whack.

After sleeping on this news, I have started compiling a list of other tasks that need doing as well. Feeling in control sometimes means looking at everything you are facing. Starting with a list gives me the opportunity to recognize the enormity of the tasks and to prioritize. I have broken things down into those that I need to do immediately and those that can wait for a while. It’s my start on creating an organized plan of action for taking back control of a portion of my life.

The insurance issue is a top priority but we have two months to sort it out. Laundry and garbage are obviously today tasks. It will be encouraging to see things getting done as I cross them off the list. Some will come back, but at least I can see my current accomplishments and it helps me understand why other things need to be put off. Just having this all written down organizes my thoughts and helps me feel like I’ve taken back some control. It may be a temporary breather, even that is helpful in this world of personal aging and caring for someone with Parkinson’s Disease.