Life has gotten a little easier since my husband had Deep Brain Stimulation (DBS) surgery. He is now able to do more things for himself and helps more with tasks around the house, it is really nice. However, there are times when the stiffness and tremors return as if to remind us that the disease is still there.

And yes, while some of his symptoms have improved, we continue on the Parkinson’s pathway. I now have to try to watch to see that he doesn’t push things too far and get hurt. As excited as I am to see some of his abilities return, I am sure he is even more excited to feel himself again. It would be easy for me to back off completely and let things go, yet I know that while he is greatly improved it is unrealistic to expect him to be where he was pre-PD. After all, while DBS can positively impact his movement and mobility, there are other issues that the past 10 years have brought that cannot be ignored.

So, my new challenge moving forward will be to keep an eye on what is happening to him as he tries to relearn skills that he hasn’t used in a while. There will be a certain amount of trial and error as his body and brain learn to communicate again and muscles that have been dormant for a while are woken up and asked to respond. It will be my job to support his safe recovery and encourage thoughtfulness as we figure out together what this portion of our journey will look like.

My husband recently had Deep Brain Stimulation (DBS) surgery which involves placing probes in his brain that are attached to a battery pack in his chest. It is similar to a pacemaker and stimulates the areas in his brain that are negatively impacted by his Parkinson’s Disease. It has been mostly good, his body seems less stiff and he is able to do things more quickly and with less effort, but there are some concerns. He tells me that he feels a little less steady on his feet at times and complains that his equilibrium is off. I try to stay close to make sure that he is safe, but not hover as we learn what these new changes might mean for him.

The most challenging thing for me is figuring out how to react to the changes. As his symptoms were progressing, I simply started doing more for him. Right after the surgery, his tremor was gone and it was amazing, he could hold me without shaking and there were no night tremors. Now, as the doctor works with programming the device, his tremors are occasionally back but much less prominent. Daily activities like dressing are easier for him and yet I find myself still trying to do things that he should probably be doing for himself. It is like we have stepped back 5 years and I need to be mindful of the help I offer, not to do too much.

I expected adapting to his illness to take me in one direction, now I find it may be something totally different. Just as he has to rediscover control of the movements he had lost; I need to relearn my partner role so I can stand beside him and help him reach his full post-surgery capability rather than stand in his way. It will be an exciting time for both of us as adapt to the new reality DBS has brought to us.

There are days when it feels like hope is all I have. My husband is having a bad day, I am tired and cranky and things are just not going the way they should. Those are the times when I wonder why we have to face this challenge? I watched Parkinson’s Disease take my father away from us, why should I have to go through it again with my husband?

Then, I stop and take a breath. It is not fair that anyone should have to deal with chronic illnesses, it is simply life. There are alternatives, I could have lost him entirely as I have seen with some of my friends. Instead, we are still here and we have time together. We can have a good future together regardless of PD, if we are willing to try.

So, I will keep looking forward with hope. If I continue to hope for better days and fun times together, I know we will find opportunities to share them. I will also hope for new treatments to minimize the impacts of his illness. Finally, I will hope that, with my support, he always wants to keep fighting the daily PD battles so that we can have many more years together and share in the joy they may bring.

Saying thank you is as important to me as it is to the person I am thanking. By saying the words, I acknowledge that their actions were meaningful to me. I recognize the value of their gift, whether it was a tangible item or an intangible action such as help or advice. I deepen my connection to another person through the acceptance of their gift and the sharing of my appreciation.

This has been a difficult year, yet there are still many things that I am grateful for and I need to take the time to acknowledge those. When the pandemic arrived and forced the closure of gyms, our coach took his classes to zoom. I am thankful to the people who developed the zoom platform and to him for giving his time. I am thankful that when he had to stop, we were able to find another coach offering classes virtually. I am thankful to our support group that has continued to meet because even though it is a virtual environment, we have been able to stay connected to people who understand and share in our journey. I am thankful to family and friends who accepted the situation and have been texting, calling, zooming and occasionally stopping by in-person (with masks) to help us navigate this difficult time. I am thankful for our medical team who remained committed to my husband’s well-being and support us as we make our way through.

Most importantly, I am thankful to the many front line workers and researchers who are unknown to me but who are playing a vital role in helping us all survive the challenges. Without the service and dedication of complete strangers, who knows whether we would be looking forward to better times in the coming year. Thanks to them all for showing us that we are stronger than we think we are and that we can face any challenge if we do it together.

Being a CarePartner often means that I am keeping a vigilant watch to make sure things are going okay. I ask my husband how he feels, watch him walk and even check his facial expressions when he doesn’t know I’m looking so I can see what’s happening there. It can feel like I am the PD police, constantly on the lookout for offending actions so I can correct him.

I learned a long time ago that praise works better than criticism. If I want my husband to respond positively to me, I need to recognize and acknowledge the good things that happen as opposed to pointing out where I feel he struggles. What if I catch him by surprise and comment on how tall he is rather than give him grief for slumping? Instead of complaining that I can’t hear him because he mumbles, perhaps I need to make sure he knows that I value what he says by stopping what I am doing and giving him my full attention.

It is easy to see the problems that Parkinson’s has brought into our lives, yet there are also many things that are good. I can choose to focus on his challenges or I can be the CarePartner who celebrates successes during our day. I know which type of support I would want if I were the one with the diagnosis, I think I’ll try harder to be that Partner for my husband.

Have a Happy Holiday- see you again Monday!

My journal is my lifesaver. I can say whatever I want and let go of the feelings imbedded in those words. If I had a bad experience, I can write it out and figure out what went wrong or how I would like to change things so it doesn’t happen again. It gives me a release to pressures that build up every day and lets me move on, but it is often full of negative thoughts. So, in addition to my journaling, I keep a separate list of positive thoughts. I used to try to generate a new one everyday, but more recently I have been simply revisiting and expanding on them which led to this blog and the concepts I share with you.

There are some basic ideas that I find myself coming back to on a regular basis. Maintaining a positive attitude, taking care of myself, and looking at the best ways to provide good care for my husband are the main themes that I write about. I often write about something that has come up in our lives and how we made our way through. I know that our solution may not be yours, but I also understand how important it is for me to know how others are making their way on similar journeys. If I can share something that helps you, then it is only payback for what I have gleaned from others along the way.

Maybe taking the time to write words down does not appeal to you so I would encourage you instead to simply take a moment over your morning coffee or tea and remember. Think about something that happened yesterday that put a smile on your face. Then, while you are having that positive feeling, look to your day ahead. Hold tight to the warmth and love in your heart because that is what will show you the way to bounce back from anything your day will bring.

Perfection, an impossible task? Perhaps, depending on the expectations I personally attach to it. Is it making sure that all of my husband’s needs are met every day? Does it mean that I get all of my chores and then some done while helping him take care of the things he can’t do that day? That I sometimes push myself to exhaustion just to make sure the house is clean and he is fed and cared for?

I’ve been there a few times and I realized that it wasn’t fun, not for me and not for my husband. When I am trying too hard to keep up with everything, I can lose sight of what really matters, our relationship. If I spend so much time attending to household duties that I am not able to sit and share my day with my husband, what is the point?

So, I have been working on figuring out what perfection could mean in our situation and looking at priorities. I think that for us it is more important to have time to share a laugh about the dust bunnies than to spend energy chasing them. I think that we can go for a walk and let the Roomba do the vacuuming while we enjoy the fresh air. I think that we can sometimes grab take out or even fast food to avoid kitchen chores. I think that what matters most is that we are together creating fun memories rather than worrying about laundry or yardwork. Life is too short, and PD complicates that. I think that if I can be a perfect Partner first, the caring will fall into place.

There are times when I feel like all I am doing is caring for my husband, his needs have totally overshadowed mine. After ten years on this journey with Parkinson’s Disease, I am finally figuring out that this is when I most need to take a step back, take a breath, and take care of myself but how do I find the time? 

Parkinson’s is an interesting disease in that my husband has good days and bad days, even good and bad times during each day. There are some discernible patterns and I am finding ways to take advantage of those. For example, I know that my husband is going to need a quiet time, if not a nap every afternoon. That is an hour that I can have for myself. On his good days, he is able to shower and dress on his own and it is best if I let him. That gives me another hour or so when I can take care of chores or work at my computer. He exercises with an on-line program most days, I can either participate with him to get my own workout, or I can use that time for myself, another hour for me.

The key here is that during those hours, I need to do things that I enjoy and that do not have anything to do with his diagnosis. Reading a book, taking a walk, playing a video game, maybe even doing some baking are all things that I enjoy and that can give me an escape. Yes, I am still here and accessible should he need me, but letting go and letting things be for just a little helps me maintain my sanity and gives me the opportunity to be a better partner for him when he does need to be my priority.

A few years ago when my husband’s medications didn’t seem to be working as well anymore his neurologist suggested Deep Brain Stimulation Surgery (DBS). We listened to what he was saying, but the concept frightened us both. Brain surgery? What if it doesn’t work and things get worse? We had heard some stories about things going wrong and decided no, he was not ready.

Time passed and his tremors increased. His meds were increased but it didn’t help as the off periods became longer and more difficult to control. Every six months we would meet with the neurologist and again the topic of DBS would come up, we still weren’t ready to talk about it. Then, last year, he was referred to a new neurologist and movement specialist who also told him that she felt he would be an excellent candidate for DBS. It took another six months and some intense conversations before he agreed to be tested to see if it might help. We met with a neurosurgeon who talked us through the procedure and discussed what my husband could expect as an outcome. When the tests indicated he would benefit from the procedure, he finally decided to take the chance and now we are a week post-op looking back wondering why we waited so long.

Yes, the surgery involved his brain, but the day after the surgery he was up and moving. He came home from the hospital and has been improving daily. I wish I had taken the time to find out when his doctor first mentioned this procedure that it could be this life changing, I would have encouraged him to do it then. Instead of regrets, I will look forward and celebrate what we have now as it feels like he has been transported back five years or more in his journey with PD.