I am spending extended times with my husband, something I dreamed of when I was still working, but that I am now finding can become exhausting. It is tough to always keep a smile on my face and a positive attitude, to try to be patient when, honestly, there are times when I want to scream. Then, I feel guilty for having those negative thoughts. It is tough to take on additional duties when I already have a full plate, but I do them because my husband can’t anymore and they must be done. It is tough to watch the person I love struggle so valiantly against this disease and still see progression of his symptoms on an almost daily basis. 

It is wonderful, however, to wake up in his arms every morning. It is relaxing to take walks together as we both enjoy the outdoors. It is delightful sharing meals and conversations. So many components of “us” are still present that I can often put aside the challenges of PD to enjoy the amazing man I married.

There are times though, when things just get too crazy. This is when I have learned to give myself permission to take a break. It may be for an hour as I read a good book or play in the garden. It may be for longer as I go shopping or out for a walk with a friend. I have a journal that I write in everyday which is a lifesaver for me. These little escapes are my release valves that allow the pressure to dissipate and give me peace. Afterwards, I always find myself refreshed and ready for another interesting day with my husband.

It started with his toenails, my husband couldn’t hold the clippers in his fingers anymore and so he asked for help. I am not a nail technician, but also know that he would not be comfortable going out for a pedicure, so I had him stretch out on the bed and set to work. Only drawing blood on one toe seemed a pretty successful outcome for our first attempt.

Toenails led to fingernails then to trimming hair in eyebrows, ears and nostrils. It was challenging at first for me to figure out how to approach him regarding things that might need attention. The technique that appears to work best is for me to mention that I am doing my own nails or whatever it might be, and then ask if he would like me to do his at the same time. I try to make the offer as matter of fact as possible and he will either agree with me or ask me to do it another time, at any rate the conversation has begun. I am careful not to say that I know he can’t do this anymore, instead I simply ask if he would like me to do it for him.

There may come a time when his personal hygiene needs become more than I can support and we will hire outside help. We will make that decision together as things progress. In the meantime, I will keep doing what I can to help him maintain his health, his appearance and his dignity.

My husband and I exercise together regularly. The program is designed for him, based on his needs as a Person with Parkinson’s, so I do what I can to modify the moves to accommodate my personal needs. He sits through the workout, I stand and move around, it works for us both. I like to be there for him, if he needs help, and I like the opportunity to be healthier myself. This shared time also gives me a chance to check in to see how he is doing while offering encouragement, support and advice, he doesn’t seem to mind.

I sometimes catch myself looking at him and wondering why he can’t do more? I build expectations of how my husband can perform based on my abilities which is not fair to either of us. I am younger and don’t have PD, I should be doing more. It also isn’t helpful to look at his fellow PwP’s as examples of how he should do because each person has a different reaction to this illness and the medications. The only way to gauge my husband’s performance is on how well he has done in the past, always remembering that he does have good and bad days.

I also need to understand that each day with Parkinson’s Disease brings its own special set of challenges. Whereas he may have had stiffness in a shoulder yesterday, today it may be moving freely and those differences will impact his ability to perform the exercises. The thing that truly matters is that whatever PD has thrown his way, my husband is always trying his hardest. I must embrace that thought and keep on encouraging him even when I think he should be doing more. He knows his body and the importance of working at his highest capacity in every moment, I will respect and support his effort.  

“Leaving this door partially open can be dangerous for me” my husband said as he entered the room, “I could easily walk into it.”  His words made me stop and think to myself how something so simple becomes a household hazard thanks to his diagnosis of PD. How often do I enter a room and leave the door ajar? What other things am I doing that could create a problem for my husband as he moves through our shared spaces?

Many of the things that I do during my day could create PD pitfalls. I always leave kitchen cupboard doors open when putting the dishes away and often leave the dishwasher door hanging open so my husband can add his dishes to the load. On laundry days, I stack 2-3 loads of laundry on the floor in our dining room. I am conscientious about putting things where they  belong, but there will be the occasional project that ends up in an unexpected place or furniture moved to accommodate something I am doing. Both of these can mean changes to our environment that could trip up my unsuspecting husband.  

We have worked together to build a home environment that is safe for both of us, I need to be aware that there may be additional factors that come into play. I know that his mobility can be challenging and requires all of his focus, I don’t want to add obstacles. I need to do my part to be vigilant in looking for potential problems as I move through my day so I can keep our future accident free.

PD is a tough challenge and yet my husband wakes every morning with a smile and faces it again. I know it is especially difficult when we go out in public and people relate to him differently thanks to his tremoring hands and stiff demeanor. His smile can come out as a grimace and his voice seems strained, it is hard for me to understand times, no wonder it is difficult for others who don’t know and love him.

It is also challenging for me as I see what is happening and am not sure how to respond. When we are out together and something happens, do I act or ignore it and hope he figures it out on his own to avoid potential embarrassment? I am not bothered by these things that happen, but how can I make sure they don’t bother him either?

We are learning new techniques for interacting in public to minimize the challenges. As I mentioned before, his tremor and the facial masking that comes with PD can make him appear unapproachable. I always defer to him and/or speak with him regardless of what the others around me are doing. It is not unusual for a store clerk, wait staff, even medical staff who should know better, to talk to me instead of to him with the expectation that I will speak for him. I try to show him the respect he is due by deflecting the conversation back to be inclusive of him.

His Parkinson’s Disease is not an easy diagnosis for either of us. I will strive to be as strong and resilient as my husband with the understanding that we can beat the challenges it brings at home and in public places. We won’t let this disease stop us from stepping out and enjoying our lives to the fullest each and every day.

When I think about being here completely, it is my being present in the moment, having an awareness of what is going on with me at all times. I’m talking about self-care versus self-aware, it’s really my version of mindfulness and not always easy to achieve.

It can mean simply acknowledging physical feelings I am having or maybe checking in with my body to see how it is doing. It is taking my internal pulse to reconnect with myself and usually involves taking a breath or two as I close my eyes and look inward. I may take a moment to reflect on how my body is feeling or even zero in on specific parts of my body. It is a great way to figure out what is aching and then do a quick stretch to help relieve any tension.

I can also do a check on my mental state. Much of my day is spent on auto-pilot doing what needs to be done. By bringing an awareness to otherwise mundane activities, I find I can appreciate them more and even find pleasure in completing them. I can better understand what is happening within by staying in touch on a regular basis. If I am having a regular conversation with my psyche, I am not surprised by cranky outbursts because I see them coming and can derail the process before it happens. My husband may wonder why I talk to myself, but if it helps me cope then I’m doing it.

I wish I could say that I am one of those people who is always mindful and constantly in the moment, but not really. I still have my mental side trips and tend to ignore achiness in my body rather than deal with it, yet I am trying. You can tell when I am doing my check-ins because they are accompanied by a deep sigh or a whispered personal comment. My husband almost always asks me what is wrong and I tell him nothing. The reality is that I am trying to make sure everything is right as I work to recalibrate my day.

We were watching an interview with Michael J. Fox recently that reminded us that my husband’s diagnosis of PD is not a death warrant. It is chronic and progressive, but not a terminal illness. Unfortunately, his response to the symptoms of Parkinson’s can lead to behaviors that make it more difficult to fight off other illnesses. That is why it is so important that he do everything possible to slow the progression of his illness in case something else does strike.

What Parkinson’s can do is interfere with the part of my husband’s brain that regulates his bodily functions, including his ability to breathe. If he catches a respiratory ailment like a cold or the flu, it becomes even more difficult for him to take a deep breath and can lead to pneumonia. Add to that the fact that we are being advised not to take many of the over the counter medications designed to relieve the symptoms of cold and flu and it becomes a dangerous time for anyone with PD. Needless to say, we get our annual flu shots.

I write about my husband regularly, but my first connection with Parkinson’s Disease was my father who was diagnosed in his mid-60’s, about 30 years ago. While my father was advised to exercise, there were no programs available in their small rural community. When he had pain, he sat down and rested. When it became difficult for him to walk, he got a wheelchair. He was given pain meds, sleep aids and anti-depressants. Within a few short years he was hospitalized where he contracted pneumonia and died with “complications of Parkinson’s Disease”.

Things have changed greatly since those days. When my husband was diagnosed, I remembered Dad’s journey and wondered what was ahead for us. What I have learned is that by implementing a positive daily plan it is possible to have some control over what happens. That means we exercise regularly and eat a healthy diet. Along with the support of a good medical team and a solid network of friends and family, we will continue this fight to whatever end it brings. PD will be with us but it won’t lead the way as we move forward in our journey.

We have passed the twenty-year mark in our relationship, and neither of us is getting younger. Add the fact that one of us has PD to the mix and you might expect that sex would not be a priority as we slip into a different stage of our lives. You couldn’t be more wrong.

We have always enjoyed a passionate and loving relationship. The spontaneity of the early days is gone yet we still manage to surprise each other at times. We have found that, thanks to his meds, there are better times during the day for making love, but he may still catch me for a quick kiss and cuddle whenever the thought strikes. Setting aside time for a more prolonged session works best and, though we may not both achieve orgasm, we find pleasure in the act of complete surrender one to another.

We are having to be a bit more creative and I have had to take a more active role in our time together. There are positions we can’t get into and things we just can’t do anymore, but that is okay because we are open to trying different things. While our activities may not be quite as adventurous, they are nonetheless just as satisfying and always bring us into a deeper level of togetherness as a couple. In those moments of intimacy, we are not a Person with Parkinson’s and their CarePartner, we are instead two people connected through an unconditional love that refreshes our souls and prepares us for another day on our journey.

For a more detailed look check out Sexual & Reproductive Health on the Michael J Fox Foundation website or Sexuality and Intimacy for People with Parkinson’s and their Care Partners from the Davis Phinney Foundation.

We participate in a walk for our local Parkinson’s Organization every year to support the many activities they provide. I am always astounded by the many different levels of walkers who come out, people who have this disease but are still willing to walk to make it better. Every event is so inspiring. Walking a 5k is difficult and when you add in balance or gait concerns, it can be overwhelming. As a PD CarePartner, there are some things that I have learned along the way that might help us both avoid falls when walking.

My husband has long legs and walks quite fast when he has somewhere to go. I have shorter legs, taking 3 steps to every 2 of his, and sometimes struggle to keep up. He doesn’t currently have any gait or balance concerns, but we need to work now to make sure that when they do come, and they probably will, he is doing everything possible to keep them under control. There are a couple of things that we do to make sure that he is safe when we walk.

First, he wears good fitting shoes that give his feet the support they need. I know that many of our friends with PD wear loafers because they are easier to get into, but, when walking, my husband prefers a shoe that ties on securely and won’t slip off should he stumble. Secondly, he practices with daily walks. We try to go at least a mile every day. There are some things he could add like swinging his arms and kicking his feet out to make sure he places his heel first, he knows them, he just doesn’t use them yet.

For more information on balance and gait, check out this article on the Parkinson’s Foundation website entitled Trouble Moving or Walking.

They’re called “on” and “off” times, those periods during the day when my husband’s medications are working for him and then when they wear off between doses. He didn’t notice them as much when he was first diagnosed, but they are becoming more defined with each passing year. When he is “off”, his tremors are much more pronounced and he moves more slowly. He tires easily. He takes his meds and usually within about 20 minutes we see things start to improve and he is ready to go again.

We have learned to plan activities and appointments within those windows of time when he is at his most functional. It is normally about 30 minutes after taking a dose of the carbidopa levodopa and lasts for 2 to 2 ½ hours. These times are the times during his day that allow him to get things done, however the medications also take a toll. They bring their own form of stiffness and uncontrolled movements known as dyskinesia that interfere with his ability to totally relax and be himself.

My husband has a wonderful sense of humor and a beautiful smile, it was one of the first things I noticed when I met him. Nowadays, thanks to PD, his smile is often hidden or comes out as more of a grimace. But, if I can catch him late at night, when his meds and symptoms are at their lowest point, I can make him laugh and see that smile I fell in love with. It catches me unawares at times and can bring me to tears, but it also reminds me to look for those opportunities and hold fast to the things that PD can’t take from us like beautiful smiles and our enduring love.