My husband suffered with lower back pain and stiffness long before he was diagnosed with PD. He would have episodes that were so bad they would land him in bed for a day or two. He tried everything to relieve the pain, and nothing seemed to be working. He finally decided, after much prompting, to see an acupuncturist. Our first visit was yesterday.

The receptionist couldn’t have been nicer, and the doctor seemed very knowledgeable and sincere. Everything was good until we reached the treatment point and my husband needed to be face down on a table that was 4 feet off the floor, not an easy maneuver for someone with PD. The doctor brought out a stool and was able to help him get up and situated so the treatment could proceed. My husband’s back was probed, needles were placed, he sat with a heat lamp for about 15 minutes and even got a bit of massage on that lower back area. Then it was time to get down.

To get off the table, which was about 3 feet wide, he first needed to lift himself, turn over and sit up. The doctor helped him roll over to the left, not understanding that’s his weaker side, and they were stuck. I was watching from a chair, not wanting to interfere, as the doctor told my husband to use his arms and push himself up. This went on for several minutes before the doctor realized he wasn’t going to be able to get him off the table safely and asked for my help. I moved to my husband’s back and helped lift him into a sitting position from behind then came back around front and helped him get down.

He has 4 more sessions scheduled and I am wondering if we will make it through. When we got into bed last night, my husband told me that his left shoulder was really sore, I think he strained it trying to get off the treatment table. I am going to encourage him to practice laying facedown and then getting back up to a standing position using our bed. Perhaps we can work out a solution for this challenge before his next appointment. If not, we may have to give it up since getting on and off the table may cause more damage than the treatment provides relief.

It’s a different life for us these days as so many of our outside social activities have gone away. I blame the change on my husband’s mobility and communication issues, but the reality is that it is just too much effort for me. Being with a non-PD group is more difficult as I struggle to balance my caregiving duties with my desire to interact in the fun. Our last attempt was dinner with a small group of friends. We were in a beautiful backyard setting which sloped gently down to a riverbank. The unfamiliar and uneven terrain kept me on the lookout for fall risks and the seating left us struggling to be a part of the conversation. We stayed for a couple of hours, but it was exhausting for both of us.

We do have a “safe” group from our PD network that we breakfast with once a month. It’s an interesting dynamic though because we separate into two groups, CarePartners and People with PD, and I am not sure how much socialization goes on that other table. My husband has said once or twice that we have too much fun at our end of the room.

Part of our solution has become family dinners at our house, something I do on a monthly basis. They provide social interaction and give family members a chance to see where we are so they might better understand what is happening. My husband doesn’t engage in conversations like he once did, yet he seems to enjoy the company almost as much as I do. It’s not a huge crowd, usually about ten of us, which can still be overwhelming if we’re all in the same room. We keep it to a couple of hours as I know how tiring it can be for both of us. It may be tiring, but it is essential as we try to maintain some outside connections on our journey with PD.

It just happens. In our case, it came on rather slowly and over a number of years as PD slowed the processes in my husband’s brain. He is still able to think, but acting on those thoughts takes additional effort and is often short-circuited before completion. Autonomic functions are failing which means that he has to put more energy into doing normal bodily functions than he should. As things progress further, it becomes impossible for him to make a choice from multiple options because it takes all of his focus simply to function. This is when he turns to me.

Because of what is happening to my husband, I find that I am faced with making decisions I never expected. The sheer volume of daily decisions can be overwhelming let alone the bigger once in a lifetime things. Should he be driving? Should we sell our home or renovate to make things easier? Should we be considering in-home care to help us both? There are days when simply trying to decide what we should have for dinner is just too much, but somehow I figure it out and we always get fed.

I still want my husband’s input on things that matter. I try to have open conversations ahead of time so when tough decisions arise, I know what he would say. If there are smaller decisions we can do together, I break them down and only give 2 or 3 options at a time. This makes the process easier for both of us. By getting his help with decisions whenever I can, when the time comes that I have to make them without him, he understands and it’s okay.

For more on decision making and PD, check out Mental Wellness: Addressing Thinking Changes in Parkinson’s | Parkinson’s Foundation.

As my husband’s symptoms progress and his care needs increase, my time is slowly being taken over by what I need to do for him instead of what I want to do for me. The uninterrupted hour of computer time that I used to have in the mornings while he was showering and getting himself dressed is gone. I still get to sit at my desk for a while, but it is broken up as he needs help drying after his shower, he needs help with shoes and socks and, based on the day, he may need additional assistance.

That daily hour was when I would write in my journal and work on this blog, but it becomes difficult when I am constantly getting up and down. I catch myself skipping days or rushing through simply to get it done. I notice that I have a different attitude on those days when I don’t take the opportunity to sort out my thoughts. I am finally figuring out that my “want to”, that desire to write, is really a “need to” for me. It may not be possible for me to have that uninterrupted hour in the mornings, but somewhere in my day I must find a space and a time to do this.

I think we all, as CarePartners, have those activities that sustain us and it’s important to practice them on a regular basis. In our house it may mean that I put off that load of laundry or cut back on meal prep time, giving up on something else to see that my need to write is met in a positive and regular manner. Caring for me means that I am caring for my husband to the best of my abilities, and that always has to be my top priority.

I mentioned in a recent posting that I like to keep an eye on research updates. Yesterday, I found a note in my email about an amazing research study that may allow neurologists to detect where a person is in their journey with Parkinson’s through a blood test. This follows on the heels of the breakthrough that allows for detection of PD through bloodwork which should allow for earlier diagnosis and treatment. Both of these are great advancements in the work being done to better understand this disease, however where early diagnosis is life changing, I have questions about the practical usefulness of the other discovery.

What we all know is that PD presents and progresses differently in every patient. My biggest question is, what good will it do for us to know where we are in the journey when we can’t know where we are going? Will they be able to test my husband and tell us that, based on what they found out from markers in his blood, he will be needing a walker within 6 months? Will they see differences in those who have greater physical impacts versus those who are facing cognitive challenges and will that drive further research? How will it help those already diagnosed?

I never want to disrespect any of the research projects or disregard any knowledge gained about this disease, I do want to be cautious of getting excited for how it might benefit my husband in his journey. Who knows where this bit of additional information might lead? Perhaps the scientists leading the study will reach a point where they can identify the specific components of the brain that are causing progression and shut them off. Until then I will keep watching and hoping that the research continues and that the next breakthrough is the one we need.

Don’t think you’re being selfish when you put your own needs ahead of caring for your partner, instead think of it as self-preservation.

Learn to say “no”, even to your Person with Parkinson’s, and do it as needed to protect your health and your sanity.

Find time to reflect on what is going well and be thankful. Then consider what is not going well and figure out how to stop doing it.

Don’t waste your energy trying to fix things that aren’t broken.

Open doors to conversations that might lead to new ideas or easier ways to do things, close those same doors when they become judgmental or simply useless.

Sometimes we need to be the voice for our partners and sometimes we just need to shut up and give them the space to speak for themselves.

If you are only identifying as a Parkinson’s Disease CarePartner, consider that life is too short to limit ourselves to just one role. You deserve to have more, figure out a way to make it happen.

Trying to be positive all the time can be exhausting, it’s always okay to cut yourself some slack.

And finally- I hope you are able to identify and find comfort today’s ramblings and that, perhaps, they’ll give you some things to think about too.

As fall arrives with cooler and wetter weather, I was wondering how this seasonal change might affect my husband’s symptoms. What will I need to do to care for him? I began my search with Google and was directed to a blog on a sharing platform called “Patients Like Me” where I found an article written by someone with Parkinson’s Disease. They shared information they had found on this topic, information that I found somewhat surprising. It appears that seasonal challenges can be as varied and unique as everything else about this complex diagnosis. Continuing my search, I found articles on the American Parkinson’s Disease Association and National Institute of Health websites that said essentially the same thing.

There have only been a few studies on how seasonal weather impacts someone with PD and the results, so far, are inconclusive. One study found no real impacts, another found that spring and summer could be most challenging thanks to allergies and other nasal complications. Another study noted an increased need for PD meds during winter months, hinting at greater challenges at that time of year to control the symptoms, perhaps due to shorter daylight hours or lowered activity levels due to inclement weather. One shared conclusion was that a person with PD functions best when the outside temperature is moderate, extreme cold or heat can be very difficult to manage.

So, my takeaway is that I don’t know how upcoming seasonal changes will impact my husband. I do know that I need to regulate the temperatures in our home and make sure he is well bundled when we go out. I can make sure that our home is well lit during the darker and shorter days of fall and winter. Otherwise, I will simply watch and try to be ready for whatever happens.

If you are interested in learning more, here are the webpages I mentioned above- Everything You Need to Know About the Weather and Parkinson’s Disease (patientslikeme.com); How Geography, Altitude, & Cold Weather Affect Parkinson’s (apdaparkinson.org); Quality of life: Seasonal fluctuation in Parkinson’s disease – PMC (nih.gov)

My husband was diagnosed over a decade ago and a lot has happened in the PD world since then. He had Deep Brain Stimulation surgery in 2020 and a lot has happened with that technology in just the past three years. Breakthroughs in research are happening daily, things which can potentially make our lives with PD better or maybe even lead to a cure. We are actually seeing progress in the fight to end Parkinson’s Disease.

I am encouraged by all of this because it could mean that I will have more time with my husband. It may mean that we are able to do more together as his capabilities return thanks to advancing treatments. I know that his DBS surgery made a huge difference, what more will happen when he is able to replace his current controller with a newer one that is adaptive and automatically adjusts based on readings from his physical needs? We are not at a cure yet, but even the newer treatments that are more responsive to his symptoms can make a big difference in our lives.

My interest in all of may seem selfish, obviously the more he can do for himself the lighter my load, but that is definitely not my primary motivator. I want that extra time for us both. I want him to reclaim some of his independence. I want to be able to have conversations and share our lives the way we once did. It would be wonderful to see the man I knew pre-Parkinson’s come back, and will continue to chase any advances in treatment that might make that possible.

My favorite go to resource for the latest in research is the Michael J. Fox website and their section called simply Research News | Parkinson’s Disease (michaeljfox.org).

Anticipatory grief was the first step for me. When I learned that my husband had Parkinson’s Disease, I was struck with the fear of what it would mean and grief for what it would take from us. I didn’t really know what was coming, I just knew it was going to be different from what we had planned. That expectation of loss lived with me for several years festering within me, fed by the uncertainty of where this journey would take us.

Then things actually started to change and we were faced with real losses. Granted they were small at first, but they brought with them actual grief for those things we could no longer do or for the things I saw PD taking away from my husband. Every task that he passed on to me was another little loss for him and it hurt to see what was happening to the man I loved.

We became part of a local PD community which was very supportive but with those connections came the opportunity for more grief. I watch my friends struggle as they deal with their challenges and grieve for what this disease is doing to them and to the ones they love. I share in their grief when their loved ones pass, the ultimate loss in this journey.

I don’t often stop to put words to this component of my life because it can be too difficult to consider. When I do take the time, it reminds me of the courage that we all must have to face whether we are the one living with this disease or their CarePartner. While it is true that I grieve for what we have lost, I also recognize those things I have found that keep me going on. I am stronger and much more resilient than I ever expected and those qualities, along with the love we share, will be what sustains me on the difficult journey ahead.

I recently enrolled in an on-line course through one of our larger PD organizations that was advertised as being just for CarePartners. I was excited because they so seldom do things just for us, their work is typically focused on the Person with the disease, not those caring for them. Finally, someone was recognizing the need for training on how we can better care for ourselves and live healthier lives as a CarePartner.

I knew that the classes were going to be time consuming, I didn’t realize that much of that time would be spent covering the basics about dealing with the symptoms of PD. It turned out to be so much more about how I should be caring for my husband rather than tips on how I should be caring for me. I made it through three sessions before realizing that the material being presented wasn’t new or really helpful. I reached out to the training team to share my concerns and their response was, if this isn’t a good fit for you perhaps you should quit. So I did.

My life as a CarePartner keeps me busy whether it is caring for my husband or our house. It was a challenge finding the time to add the classes so from that aspect it has been a relief to quit. I am disappointed about the content and yet this experience has taught me another lesson. It’s okay to stop doing those things that do not my life easier or better. No, beyond okay, it’s important that I recognize and quit doing things that add more stress without adding benefit. I’m not being a quitter, I’m being self-aware and that is an essential skill if I am going to take good care of my husband and, oh yes, me.