There is always enough going wrong in my day, so I have decided to look for what is going right instead. If I can find things that are going well, even during difficult times, it keeps me moving forward. It would be easy to focus on what is going wrong but then I would just want to sit down and cry and what good would that do? Instead, I think I’ll look for the positive opportunity hidden in the challenge and see if I can’t turn it all around.

An example is the other day when I forgot to do the laundry. Unfortunately, the next day I was feeling under the weather and the laundry still didn’t get done. By the time I finally got to it, we had four loads instead of the two I had planned for and it took most of the day. It was an overwhelming task that got in the way of the other things I needed to be doing. I have to admit that I did spend a few minutes kicking myself for letting it pile up on me but then just took it on and got it done.

Instead of focusing on what was wrong, having to do the laundry, I decided to look at it as found time and did some reading while waiting for the loads to finish. I let go of other worries and the day actually became quite restful. Things got even better when my husband, after watching me work so hard on the laundry all day, decided we needed to go out to dinner. Things going wrong turned into things going very right that day!

I learned a new word recently, it’s thermodysregulation. It’s a medical term that refers to a symptom, or really a group of symptoms, that come with my husband’s diagnosis of Parkinson’s Disease. I started looking into this when I noticed that no matter how hard he worked out, my husband didn’t sweat. I was assuming that he wasn’t working hard enough because I was working out right alongside him and I was sweating like crazy. Instead of continuing to push him to work harder, I decided to see if there might be another reason.

It turns out that one of the challenges of Parkinson’s Disease is thermodysregulation. His body loses the ability to regulate internal temperatures which is what keeps my husband from sweating. His autoimmune nervous system in not functioning properly to activate his sweat glands. The funny thing about this disfunction is that while it keeps my husband from sweating, it can also cause other People with PD to sweat profusely by overstimulating those same glands. It can under or overstimulate the system depending on the person and their physical makeup.

Thermodysregulation is also why he is intolerant to hot weather, again because his sweat glands and other internal regulators aren’t acting like they should so he easily overheats. Inversely, he is very sensitive to cold weather as his body doesn’t work to conserve heat or warm him either. He’s the one putting on sweaters when it’s 70 degrees out and bumping up the thermostat in the house. At least he can’t blame that on me anymore.

See PD Can Result In Heat Intolerance – Parkinson’s News Today (parkinsonsnewstoday.com) for more.

As I get older, I find that I actually enjoy sitting in the sun more. It feels good on my bones and relaxes my muscles. But it also is drying out my body and my older body is not as good at rehydrating itself. My glands don’t secrete as much sweat and my heart doesn’t pump as well as it once did which slows down the flow of blood and makes my body hold on to more heat than I did when I was 20 years younger. The reality is that almost 10,000 seniors die every year from heat related causes. For more on these factors see The Effects of Heat on Older Adults | Harvard Medicine magazine.

We are currently in the fourth or fifth heat wave of this summer and hopefully the last. The temperatures outside are climbing into the nineties which means we are staying indoors where we have air conditioning. What I learned recently was that it doesn’t have to be this hot to be considered dangerous, many people actually recommend taking care when temps reach 80 degrees. I found some great tips regarding how to deal with the heat at Tip Sheet: Hot Weather Safety Tips for Older Adults | HealthInAging.org.

 Things are even more difficult for my husband thanks to his diagnosis of Parkinson’s Disease. Sitting in the sun is not an option as higher temperatures exacerbate his Parkinson’s symptoms. The disease slows down all his physical processes and restricts his ability to cool himself. Heat intolerance is not uncommon as more than 60% of People with PD have something called thermodysregulation, a malfunction within their autonomic nervous system. Add the fact that his medications make him more susceptible to sunburn and it is no wonder he prefers to spend his summer days inside.

Check Friday’s blog for more on this condition called Thermodysregulation.

This is so much easier said than done for me. My husband exercises 6 days a week, that’s an hour of scheduled activity for both of us in the middle of every day. He always needs a nap either before or after, another hour and a half gone. By the time we are done with this, our day is pretty much full. We may have an hour or two free but taking an entire day? Not a chance. We have one day when he doesn’t exercise, yet we still never seem to find time to do fun things. Just because we aren’t exercising, we still have regularly scheduled meals and a nap. PD delegates how we spend our time and there isn’t much room for slack.

If we can’t take a day off together, then do I try to take one off by myself? What would that look like? When I was working, I called them stress relief days, not necessarily an option for a CarePartner. I have friends who have chosen to use respite care for a break. That involves longer term, full-time stays apart and I don’t feel that I need that, I just need a day. One day when I could come and go as I pleased. No meals to prepare, no exercise class, no animals to care for, no house or yardwork. A free day without any responsibilities. I’m not sure that I would do much different, but it would be so nice to have the choice.

How can I make this happen? First of all, I need to ask for it. I need to let my husband know that I need some time for myself and then work with him to figure out a plan. Second of all, I need to accept that I can let go, I don’t have to do it all. My husband is still capable of caring for himself as evidenced by the fact that I am gone for a few hours to volunteer every week. If we can make that work, we should be able to shift it to a day when I am free to do personal tasks or even nothing at all. The third step is to find a day when he is feeling good and simply give it a try. A day of uninterrupted nothing, if that is what I choose. Living in the uncertain world of Parkinson’s Disease, I wonder if this is actually possible?

Parkinson’s Disease is an unrelenting enemy and will present in unexpected ways. It does no good to for me to try to outsmart it and anticipate the next move it will make, only my husband’s body knows and understands how challenging it can be. Everything seems to be coming at him from a place without rules where only the disease gets to make the decisions. It is unfair to him and to me as I ty to provide whatever support I can never knowing exactly what it is he needs.

Which brings me back to the beginning, what can I do to help? The first thing I can do is arm myself with knowledge. The more I know about what might happen, the better prepared I can be for what does. I stay connected with on-line resources like the Parkinson’s Foundation, Davis Phinney Foundation and Michael J Fox Foundations, to name a few. I attend seminars, webinars and support groups to learn as much as possible about Parkinson’s Disease and Parkinsonism, the broader label.

The other thing I can do is acknowledge that this is happening to us and love him anyway. He did not ask for this diagnosis or the challenges that accompany it. I need to be here and help him accept what is happening. I need to help him in his fight, whatever that looks like, and I need to respect and love him. He is losing control of his body, his life and, in some cases, his mind. I need to make sure that he knows he hasn’t lost me as well.

Life is a constant battle with patience for me. A great example is this morning when I sat down to start writing this blog and my computer decided to upgrade. It took 20 minutes to complete while I waited. Is life trying to teach me patience or is the universe trying to tell me to slow down and lighten up? Whichever it is, they now have Parkinson’s Disease solidly in their court.

Bradykinesia, bradyphrenia, bradycardia, all conditions that slow my husband down and give him the right to challenge my patience thanks to his diagnosis of PD. The term brady comes from the Greek and means slow so whenever it is combined with another medical term it slows some part of his body down. Kinesia refers to movement and the overall body slowness, phrenia signifies the brain and the slower thought processing that takes place and cardia, which I find scariest of all, is when his heart beats slower taking his energy levels with it. I understand that this is out of his control so I have to control my reaction, not something that comes easy for me.

There are times when I am thankful for the slower pace. I have always been the one who comes in just at the right time, my husband was the one there 15 minutes early. His new challenges serve as a compromise between the two. He is still able to get himself ready to leave and now we find ourselves headed for the door at the same time. I have always been a fast eater which is not best for digestion. When I actively work to slow down to match his timing, I seem to enjoy the meal more and not eat as much. Having a conversation can be challenging as his brain moves more quickly than his mouth, but when he is given time to communicate, he is still able to make his thoughts and opinions known.

The biggest change I have had to make is planning for the extra time. I know spontaneity is no longer a part of our lives, anything we do has to be scheduled and allotted the appropriate time. I can choose to accept that life simply moves slower now especially when it means that my patience won’t be constantly under attack and I will be ready to go when he is. Perhaps I just need to appreciate those moments when I can view it as life being lived in a more leisurely manner?

I absolutely love my support group people; they are so understanding about the everyday things I am facing as a CarePartner because they are living it too. But, and this is a big one, they are part of it. They are also immersed in this disease and being with them, while it is fun and supportive, is a piece of my whole PD journey. I need to find someone who is not connected to my husband’s illness and who can instead focus on me and issues I face. I know it sounds selfish, but I need someone in my circle who is able to focus specifically on my stuff and not because my husband has PD.

Since all my friends and acquaintances know the situation, I find myself searching for a professional. I need a counselor who can listen and provide advice as I age. I need someone who can help me figure out how to stop stuffing feelings away, especially about things that matter. I need to figure out how to better deal with my own concerns because they are getting in the way of living life fully. I need someone to talk to about me the Person, not me the CarePartner.

It’s difficult to admit that I need help and even more difficult to ask for it. I have a list of counselors that my Primary Care Provider gave me, now I need to narrow the search down. She suggested going to Psychologytoday.com to see if I could get more information about the providers and their specialties before making an appointment and that will be my next step. Then, I’ll make the call and hope for the best. It’s time I find someone just for me who won’t come with a PD filter.

I wish I had remembered to do this yesterday. My husband was always the one who cared for the lawns. I have taken over that duty out of necessity and a big piece of that care is setting sprinklers. I think he feels guilty watching me work so he tries to help. I have a system that works for me that is different from whatever he was doing before. Last night when I went out to get started and he offered to help, I knew that I should say “no thanks”, but I really hate to discourage him from doing what he can. Needless to say, it didn’t take long before I was grumping at him because “I have a system and you’re messing it up!” followed by “Just go back inside and leave me alone to do this!”

Wow, if only I had taken a breath and a moment to think before letting those words fly out of my mouth. I totally get why he wants to help and appreciate it most of the time; last night I was late getting started and just wanted to get it done. I didn’t consider that he would approach the process differently and that it might cause conflict. I also forgot that my husband is more important than the lawns, I need to care for him first and everything else comes after.

As soon as I finished setting things up I came inside and apologized, but once those harsh words are out they stay for a while. His feelings were hurt and I felt like a heel. We will get past this, but I know I need to try harder to make sure that it doesn’t happen again. In the future I must learn to be more patient, more understanding and never grump at him over something so insignificant. Instead, I’ll grump at his diagnosis of Parkinson’s that puts us in these difficult situations.

There is a saying that “when you know one person with Parkinson’s you know one person with Parkinson’s” but when you are in a PD support group you get to know many people with Parkinson’s. We were about 8 years into my husband’s diagnosis before we found our first support group meeting and I am so glad that we did. The fellowship that comes from being with people who are all facing a chronic and progressive illness is remarkable. Discussing actual experiences helps all of us better understand his diagnosis as we share information we won’t or can’t get from a medical team.

Parkinson’s presents with a broad spectrum of symptoms, many of which were represented in our new circle of friends. We met People with Parkinson’s who were at all different points in their journeys, some newly diagnosed some long-timers, some with young on-set, some older folks like us, some women, some men, some with physical challenges and others facing cognitive decline.  There were wheelchairs, walkers and some who strolled in as if nothing was wrong. Becoming part of the group gave us opportunities to watch as this disease progressed in different and sometimes more severe ways.  And in some cases, we even had the opportunity to say goodbye.

As difficult as it is for us to watch as friends go downhill, I also know it is a good thing that we are here to share it with them and especially their CarePartners. They all need to be surrounded by people who can appreciate what is happening and offer support. We need to be a part of this group of wonderful people at all stages of my husband’s illness and understand what the future might hold for us. Yes, it may mean we face losing more friends, but we gain so much more from having known them. We all need to be here for each other, holding hands as it were, to make the journey less traumatic for everyone.

There are many difficult decisions that I have faced as a CarePartner, things like when to ask my husband to stop driving or how to keep him off ladders. Most of those decisions were based in his physical challenges, the tremors or stiffness that make doing certain activities unsafe. It was an easy call to say “no, honey, I just don’t think you should do that anymore” and blame it all on the progressing symptoms of his Parkinson’s Disease. Using his PD as the reason made many of those tough calls easier for both of us.

But now something has come up that has nothing to do with his diagnosis. We have an elderly dog and are coming close to the time when we will need to put him down. Saying goodbye to a loved pet is always difficult and was a decision that we shared in the past. My husband’s physical and emotional states are impacted by his disease so when it comes time to say goodbye to our pup, I will be the one to make that final decision and necessary arrangements. A decision that will be based partly on my personal limitations as I can care for my husband or I can care for the dog, I don’t have the capacity to continue caring for both. And yes, that realization brings a boatload of guilt and feelings of incompetence. Why can’t I do more?

So, this tough choice may not appear to have anything to do with my husband’s diagnosis yet his Parkinson’s Disease does play a part as I try to decide what to do. I know my husband will let me take the lead on this and agree to anything I choose; he understands the added burden caring for the dog brings to our lives. My challenge will be finding a way to accept that I am doing everything I can for both of them and I just can’t do anymore. It is time to move forward with what I know in my mind is the right decision, perhaps in time my heart will understand and follow too.