Prioritizing self-preservation gives a different perspective on what must get done each day.

My concept of self-preservation, or self-care as some call it, means that I must find time to breathe. Accomplishing that isn’t always easy but I have a few things that work for me including workarounds for difficult tasks and asking for help on things I really shouldn’t be doing myself. I make the time to do things right the first time and own the fact that my health and happiness matter as much as my husband’s. I recognize when I reach my limits and stop whatever it is to take a break. I understand the importance of putting my needs first.

Practical things involve stepping outside, regardless of the weather, and taking a few deep breaths. When facing a new task, I take a moment to consider what might be the best approach rather than just jumping in to get it done. I don’t try to do everything my husband did, we have different physical limits and I don’t want to hurt myself. I accept that there will be things I can’t or don’t want to do and reach out for assistance. When I need a break I take it and if it means a task has to wait for another day, so be it. I make time to do things I want to do and sometimes that is simply sitting down to eat a donut, one of my favorite treats.

Life is too short and too important for me to let Parkinson’s completely take over. As my husband’s symptoms fluctuate, my challenges will too but that doesn’t mean I can’t still find ways to live a full and meaningful life. Some days that fullness may be mostly taken up with caring for him, but I will still find time to take care of me because if I’m not okay, he’s not going to be either.

Patience is a vital tool for People with Parkinson’s, it’s even more vital for those of us trying to care for them.

My husband appears to be in sloth mode today, everything with him is in slow motion, whereas I have things that need to get done. Standing by and watching him struggle with tasks that I can do quicker and easier is driving me crazy. But I know that whenever I start doing something for him, it takes away from his abilities to care for himself. I want to be patient, but some days are simply harder than others.

The “Brady” twins are targeting us today. That’s bradykinesia and bradyphrenia, or slowness of movement and brain functioning. My husband openly states that he can’t do more than one thing at a time and that one thing must be done at a snail’s pace sometimes. Parkinson’s has decided his brain is going to process commands more slowly and the messages move through his body more slowly and finally he must follow each one in detail. I feel for him because it’s definitely not his fault he no longer has autonomic movement making everything he does challenging.

Which brings me back to my dilemma, finding patience on a sloth mode versus long to-do list day. First step, I take a deep breath and re-evaluate the list taking off anything that isn’t a priority. Second step, I must take care of anything that needs to be done with or for my husband. Third step, help him get him settled somewhere and go to work with whatever time and energy I have left. Fourth step, it’s time to celebrate what did get done and take a rest after another successful day in PD land.

Stay abreast of advances in treatment, you never know when they might be beneficial for your loved one.

When my father had Parkinson’s 40 years ago, we didn’t hear much about research. The only time my mother was approached about it was after his death when a local medical school asked if they could autopsy his brain for research purposes. Of course she said yes. My husband and I, on the other hand, have been watching and participating in research ever since his diagnosis nearly 16 years ago. There have been many exciting changes in detection and even some in treatment of this disease and a few have actually impacted our journey.

It started with my husband participating in a couple of medication trials. His symptoms were recorded and then progression was tracked for years through other studies. I have occassionally been able to take part as part of a non-PD control group. We have seen medications developed to help slow the progression of his disease, we have seen gene therapies and tests developed that can detect the illness before symptoms even show. We have seen more effective and easier ways to deliver carbidopa levodopa, the basic treatment for most Parkinson’s patients. My husband’s new controller for his deep brain stimulator has the capability of adapting delivery to need based on biofeedback it can gather from sensors in his brain. We aren’t using that feature yet but maybe in the future?

Much of this research is driven and funded by individuals who were diagnosed themselves. Perhaps that is why things are happening, the people who are in charge understand PD challenges because they are living it. Whereas federal interest in funding can come and go with elections, the foundations created by people like Mohammed Ali, Michael J Fox, and Davis Phinney to name just a few, keep doing the work for all of us. I am sorry that these people were afflicted with this disease, but will forever be grateful for their contributions to finding treatments and, hopefully, one day a cure.

Expecting or anticipating problems is simply taking on tomorrow’s challenges as a worry and worrying takes away energy you need for more positive activities.  

I wasted so much time over the past couple of months worrying about my husband’s need to have his DBS battery replaced. When would he get the surgery and would it be before the old battery completely died? What happens if he doesn’t? What if there are complications to the surgery? Once he was finally scheduled, I worried about how we could get to the hospital at 5:30 am for a 7:30 procedure and where we would park? Some of the early apprehension may have been understandable, but as the situation carried on for a couple of months my concerns really became ridiculous. I mean letting where to park keep me awake at night, seriously?

The day of surgery arrived and I was still quite stressed but determined to just push on through, which we did. Out of bed at 4, out of the house by 4:45, arriving at the hospital at 5:15. We found a Handicapped Parking spot just waiting for us in front of the main doors. Everything at the hospital went well, especially the surgery, and we were on our way back home by 9:30 am.  

The lesson I am taking from this experience is that I shouldn’t doubt my capacity nor my capabilities as a CarePartner. All those worries were based in fear of the unknown. I was letting my imagination run wild with “what ifs”. Yes, there was a chance that his battery could have died while we were waiting but we would have handled it together. It was a challenge getting up so early and yes I was concerned about parking at the hospital but these are all things that I handled on the day. They did not deserve the amount of time or space I gave them in my thoughts. I need to trust that I am able to meet the challenges each day brings. It’s time to focus on positive activities that help me manage, not negative worries that simply add to the burden and stress. 

Saying Parkinson’s Disease is chronic and progressive but not terminal still means that an end will come one day.

Another friend from our Parkinson’s network passed away this week. I am sad for the loss but grateful for having known him and his lovely wife. And, if I know anything about them at all I know that they would not want us to grieve, but to use this as a reminder to live each day as fully as we possibly can. As my husband says, we are all going to die one day whether we have PD or not. Let’s not waste time worrying about what is coming and instead use our time enjoying what we are given today.

Possibly the only positive thing about our journey with Parkinson’s has been finding a community of new friends in this same situation. Reaching out for support gave us the opportunity to engage with an entirely unique group of people we never would have met otherwise. PD doesn’t discriminate by race, gender, ethnicity or political leanings, it’s an equal opportunity affliction. It’s a natural version of diversity in action.

I have spoken before about how grieving is a basic component of my CarePartner journey. Perhaps it’s because I see little losses every day that are moving my husband closer to the inevitable. Or perhaps it’s fear of the unknown, if I do outlive him, what will life look like after? I am reminded that focusing on what may come takes me away from appreciating what I have now. I can hear the many friends we have lost and their CarePartners telling me “Live life in the now. The end always comes too soon.”

A person should only be facing one thing at a time, not possible when you have Parkinson’s or are a Parkinson’s CarePartner.

It was at a Parkinson’s support group that I first heard this statement regarding the medical challenges people with PD face and it is so true. Once someone is diagnosed with a chronic illness, that should be enough. Take my husband for example, dealing with Parkinson’s should be his one thing, but it never is. Granted this diagnosis doesn’t eliminate the aches and pains that come alongside aging nor does it serve as a barrier to seasonal allergies or viruses. And it increases the risk of injuries from fall so there is always more than one concern as we travel this journey.  

The more health challenges he is facing, the more work it means for me as his CarePartner. There are additional appointments, medications, worries. There are emergency trips to the drug store for supplies and calls or messages to his medical team. Any physical changes in his body usually make his Parkinson’s symptoms worse which can mean that he needs more attention and more support with activities of daily living. When he gets sick on top of his baseline of PD, it always means my workload increases to match whatever new level of care is necessary. When he gets better, it doesn’t always go back down.

They say that people don’t die from PD, they die with PD. We have seen this many times as friends contract covid or pneumonia, injure themselves in a fall, go into the hospital for what should be a treatable illness and the PD complicating factor means they never come home. It truly should be only one health challenge at a time and his should be his diagnosis of Parkinson’s. That’s more than enough for both of us to deal with.

Life as a CarePartner will get busy at times, that isn’t an excuse to skip self-care practices. In fact, that’s when you will need them most.

We have appointments of some sort every day this week. My husband is seeing a Hematologist, a Speech and Language Pathologist, and an Orthopedic Specialist. I have a virtual call with our insurance company and we both have a meeting with our Financial Counselor. On Friday we get to have breakfast with our PD friends, a lovely way to finish things off. It will be a busy and possibly stressful few days.

It would be easy for me to say that I don’t have time for my journaling or to take a break from writing this blog since there is so much happening. I could easily say no to my guided Mindfulness practice this morning or skip yoga on Wednesday to make time for other chores that must be done since these are voluntary and impact only me. But that would be taking away lifelines at a time when I am most in need of the support.

A stressed out CarePartner is not a good CarePartner, especially for me. I get short with my husband and tense muscles make me more prone to self-injury. Perhaps that is why I have seen self-care referred to as self-preservation or protection. If I am going to be here for him, I have to be here for me first. Forgive me if I cut this short, it’s time to get ready for my Monday Mindfulness practice with the Parkinson’s Foundation.

 [PR1]

Sometimes it’s your loved one’s Parkinson’s that throws you a curve and sometimes it’s not. Be flexible and open to unexpected challenges.

In my case the unexpected came with a fuzzy coat and a bushy tail. I was sitting at my computer reading the paper when I heard a scurrying sound in the bedroom. I jumped up to see what was happening and found the noises coming from inside our bedroom wall. It felt kind of good to bang on the wall and yell as I did my best to scare whatever it was out. Running out to the front of the house, I caught a glimpse of the culprit, a squirrel, making his escape through the attic vent. In a non-PD life I would have simply handed this problem off to my husband. I did ask his advice and he was able to make a couple of suggestions on who we might call for help. This was one of those times when I really didn’t want to take charge but someone had to, so I grabbed my phone and started texting and dialing.

I learned a lot through this process, hopefully things I’ll never have to use again. For one thing, handypersons are not allowed to deal with wild animals (like squirrels) due to state laws. Next I turned to Pest control companies and started to get the same story. I think the person I was talking with recognized my desperation and said that if I knew how the pest was getting in they could put up an exclusion screen to keep it and other rodents out. And he was able to send a tech the same day, hallelujah!

It’s not like I didn’t have enough on my plate before the squirrel decided to move in, but actually figuring out how to evict it was a nice diversion. It gave me an excuse to step away temporarily from the stuff I was already dealing with and face a totally new situation. I had several conversations that day that were not about PD but about squirrel eradication. Plus I have a new skill to put in my toolbox and a great story to share next time I get together with my fellow CarePartners. Like I said, it pays to be flexible.

The emotions that come with caring for a loved one who has a chronic illness can be confusing and difficult to navigate.

I started seeing a new therapist last week. I wanted to talk with someone because I was feeling stressed, a little on edge, and perhaps mildly depressed. Trying to define my emotions was complicated. I know that I’ve been cranky with my husband at times and he doesn’t deserve that. I know that I have felt exhausted, anxious and even apathetic at times, I don’t deserve that. It was time for me to seek professional help.

Our first visit involved a bit of getting to know each other and going over some basic agreements. Then she asked the question, “How can I help you today?” and my tears started. The release of emotion surprised me. It seems that I just needed a safe space and a compassionate ear so I could let go. I was finally able to talk about the edginess, the exhaustion, the challenges. I talked about the anger, the guilt, but mostly I talked the sadness I was feeling watching this disease destroy the person I love most in this world. And she told me that it was okay for me to feel all of those emotions, that I was okay, something I really needed to hear.

I thought I was doing all the right things to take care of my mental health. I journal daily, I work out, I belong to a wonderful Parkinson’s support network. Sometimes doing all you can on your own just isn’t enough. I have another appointment later this week and anticipate visiting with this counselor weekly for a while. And I’m stocking up on tissues so I will be prepared for that next conversation.

Possibly the biggest challenge we face on this journey is not knowing what’s coming next on a daily basis.

I wake up each morning never knowing what the day ahead may bring. I know what’s on my calendar and the things I hope to get done, but I haven’t really known what’s possible since my husband was diagnosed with Parkinsons’s Disease. Because we’re not in charge anymore, his PD is. And things can change quickly based on whether he’s having a good day or a bad day, a never ending question.

What causes good or bad days? Is it a problem with his meds or something he has eaten that interferes? No one can tell us. For my husband, those are days when he doesn’t feel like doing anything. He prefers to call them “low energy” days. We laugh about it because neither of us can remember him having a “high energy” day. There is also the constant worry about him falling. It only takes one fall to throw us schedule off for days. Added to that are the normal aches and pains he has from growing older. When he is less able to function due to low energy or an injury, I have to up my caregiver game. Obviously less on my to-do list gets done.

Life is challenging, life with PD has the potential to be overwhelming whether you are the one with the disease or the one caring for them. What I have learned is to take advantage of his good days to get my things done. I have also learned to accept that there will be days when nothing gets done. There’s always tomorrow and maybe, just maybe, it’ll be okay.