We had a good day yesterday. It wasn’t really anything we did, but the day was calm and comfortable. There were a few chores I needed to get through and my husband helped when he could. His exercise class was a stretching class that he was able to do on his own, so I sat it out and did other things. It was a day when we simply existed, and life was as close to normal as it gets. I like those kinds of days.

We have plenty of the other types of days when things just don’t seem to be working. It may be that one or the other of us is having a “low-energy” day and I can’t get motivated or motivate my husband. Or it may be one of those busy days when I don’t seem to be able to get anything done because something else is always calling my name. And, of course, there are the days when something unexpected happens, like my husband taking a fall, and we have to deal with the ramifications of that. But yesterday, none of those things applied and it felt good.

The bad days demand my attention and so I don’t always take the time to recognize when the good days are happening. My body tends to be on alert all the time expecting something to occur and when I can actually let go of that, it feels great. I always have to be present and maintain an awareness of what is going on around me, but on the good days it is a more relaxed consciousness as opposed to the vigilance I sometimes feel. Yesterday was good, who knows what today will be like, but I know I will make it through regardless because there are still good days ahead.

What was I thinking when I wrote these words? Exactly which of the new skills I am having to learn should be thought of as opportunities? How do I reframe the situation so that the things I am being called upon to do are positive activities?

My husband was always the barbecuer in the house and he did a darn good job of it until he didn’t feel comfortable using the grill anymore. So, I took over. Those first few attempts resulted in some undercooked or overcooked meats and charred vegetables. I could manage anything that was wrapped in foil, but to actually cook the food directly on the grill was beyond me. I did my research, kept trying, and 3 years after I took over as grillmaster I have mastered the basics. 

Negotiating with contractors was another task that usually fell to my husband. We would talk about work that needed to be done and then I would leave it to him to make the contacts and get things set up. As things progressed, talking on the phone became challenging for him and I was the one who got to make the calls. He would sit beside me, coaching me on what to say until the day I finally asked him to back off and let me do it myself. We still discuss things but I am the one who normally ends up working directly with the contractors whether it’s our lawn guy, our plumber or the guy who cares for our trees.

It’s interesting that as I am called to do more, I am growing in confidence to try more. Yesterday we had a low tire and, even though it took me to two separate tire stores, I was able to take care of it while my husband was napping. These may not be wonderful or amazing feats, yet they are things that need to be done and it is satisfying to know that I can do them. I don’t look forward to the day when it all falls to me, but I know that I will be ready thanks to the skills I am developing along the way.

I recently came across an article about possessiveness, a characteristic I had not heard of nor associated with myself, however, after reading the article it makes me wonder. The piece came to my email as part of a WebMD daily newsletter and this one really struck a note. I know we have become somewhat co-dependent on each other as his illness has progressed, but there is also a possessive quality about our relationship, something I hadn’t thought of before.

In the article they describe possessiveness as “fundamentally a fear of loss” and go on to say that “Possessive people worry that their partners will leave them.” My worry isn’t that my husband will actually physically leave me, my worry is that I am losing the man I married gradually and that one day I will wake up and he will be entirely gone. And yes, it makes me angry and sad that I can’t do anything about it. They talk about the lack of trust in the relationship that can cause feelings of insecurity, but it’s not trust I am losing, it’s the man himself.

The authors offer four things to help me deal with my feelings of possessiveness, interesting suggestions that might help in my role as CarePartner. They suggest that I avoid snooping, talk with my husband about my feelings, maintain other friendships and find a therapist. Snooping is not a concern as I can easily see changes in my husband and our relationship thanks to his Parkinson’s Diagnosis. Otherwise, I agree with their thoughts. I do need to have a network of friends, I do need to talk with him about what I see happening until we can’t talk anymore, and I do need to have the number of a good therapist just in case.

To see the article in its entirety click here-Possessiveness: 4 Signs to Look For (webmd.com).

I was out to lunch with friends a while back and the conversation turned to how my husband was doing. one of them turned to me and said, “It must be difficult for you.” How am I supposed to respond to that? Does she really want to know how it feels to see the man I love struggling with the simplest of tasks? Does she really want to know that I am doing things I never thought I would be doing for him because I love him and they need to be done? Does she really need to know how tired I am sometimes or how much I miss the things we used to be able to do together? Will she understand when I burst into tears right here in the restaurant? Instead, I say the words “it’s tough sometimes but I manage” and change the subject.

If I talk to her about how I feel, then those feelings become real and I would rather not have to deal with them. I have learned to accept where we are on our journey and find joy rather than regret. If I dwell on what isn’t, I can’t appreciate what is. And what is matters a lot to me. There is so much we still have and can still do. As to the things I miss, I am thankful that I got to do them in the first place and nothing can take away the wonderful memories I share with my husband.  

So, when those from outside out PD circle ask me how I’m doing they are always going to hear that I am okay and all is fine. I have a loving husband, fantastic memories, a positive support network and a plan for whatever the future brings. It may be tough but I can and will always manage.

My husband has developed waxy skin, especially on his upper chest and shoulders. He has had patches of dry skin on his face for as long as I have known him and also dry scalp, which he self-diagnosed as dandruff.  I was wondering if any of these have anything to do with his diagnosis of Parkinson’s Disease and, thanks to Google, learned that his skin issues definitely could be connected.

 Many people with Parkinson’s Disease have skin conditions. For some, it is the dry skin patches or oily waxy skin like my husband is experiencing. He also tells me that he doesn’t sweat, even when exercising, but others within our PD network experience excessive sweating. We have been advised that he is at greater risk for skin cancer, specifically melanoma, and some of our friends are already dealing with this issue.

 Sometimes these changes are caused by medications and can be alleviated with a change in dosing but other times it is simply thought to be the result of the changes in dopamine production in the brain. My husband uses a shampoo to treat his dry scalp and has a cream that he puts on the irritated patches on his face. As to the waxy or oily skin, he showers regularly and otherwise puts up with it. He should be using sunscreen to protect from melanoma but that is a fight I have given up on. He tries to see a dermatologist annually. Knowing that some of his skin challenges pre-dated his diagnosis, perhaps this information will someday help with early diagnosis?

For more information see Skin Changes | Parkinson’s Foundation; and specific to the potential for skin cancer see Parkinson’s Disease & Risk of Cancer | American Parkinson Disease Association (apdaparkinson.org).

There are days when I really want to trade places with my cat. She is sleeping on her perch next to my computer desk and every so often she opens one eye to check out what I am doing. There’s a nice sunbeam coming in the window, and she doesn’t have a care in the world. What a life.

Her meals are always provided as opposed to my being the household cook. She never has to clean her toilet whereas I not only have the toilets, I also have the entire house. She is responsible only for herself and, when she wants alone time, she has multiple locations in the house where she can hide out for an hour or two. I am so jealous.

But, she also doesn’t have the shared experiences of daily triumphs over the challenges PD puts in front of us. She doesn’t have my sense of accomplishment at the end of each day knowing that I have done a good job of caring for my husband and myself. She may not carry the same load that I do but she also doesn’t have the reward and the love that comes from being his PD CarePartner and the caregiver of our lives. So maybe I won’t trade, at least not yet.

It is summer and I wanted some fresh berries to eat. We visited a local fruit stand, but they were all out, so my husband suggested we go to the local farmer’s market. I have been avoiding this because it involves a lot of walking, there are crowds, it is noisy and can be very stressful. I was sure it would be too much for him to handle but, in reality, I think I was more concerned I wouldn’t be able to handle it. The “what ifs” took over in my mind, especially “what if he falls?”, and made me afraid to even try. I didn’t say anything to him, there have been enough conversations with me telling him what I don’t think he can safely do.

Sunday morning arrived and I asked if he was still interested in going to the market. He said yes, so I set aside my concerns and we headed out. He took his walking stick along as an aid, the first time he had used it in a public setting. We found parking less than a block from the market, walked the entire length of stalls, bought our berries and made it back to the car without any problems. We had lunch at a new restaurant on the way home and then my husband took a nap. It was a good outing with a positive outcome and none of the “what ifs” I had stressed about ahead of time happened. All my worry turned out to be nothing but a waste of energy!

My husband knows his body better than I do. Thankfully his cognitive skills are still intact and he has a pretty good awareness of what he is capable of doing, or at least trying to do, safely. He knows whether he is having a bad or a good day and will tell me. I need to listen to him when he says he wants to do things and, within reason, let him try. I am always there ready with support or supervision. He would have missed out on a chance to try out his walking stick and we would have missed out on some terrific berries if I had overruled his choice. I’ll always worry, can’t help that, but I am going to try to listen a little better too.   

Summer weather is supposed to make us all happier and send us out of our houses to play but unfortunately, those of us who are providing care 24/7, it isn’t that simple. My days as a CarePartner are full year-round, how do I find time for anything more just because it’s sunny and warm? Summer brings a truckload of additional chores and opportunities. Daylight lasts longer which makes me want to do stuff outside, but when do I get the inside stuff done? How can I balance enjoying summer and taking care of chores without exhausting myself?

The seasonal change impacts my mood. Where I should be happy and light, I often find myself stressed and grumpy, worrying over the things I don’t get done. And, I have to admit that sometimes the sunny days accentuate my feelings of loss for the fun things we used to do. We have yard games that we used to set up, they are all in our shed having become too challenging. I see our neighbors going camping. Friends talk of trips they are taking and, to be honest, I am jealous. My husband’s Parkinson’s Disease has changed how we spend our time and it often seems like all work and no play.

Summers will look different thanks to my husband’s diagnosis, but that doesn’t mean I can’t still find ways to enjoy them if I try. I hired someone to help with the yard work and I am learning to ignore the weeds. We take short day trips instead of going camping. I barbecue a lot and we eat our meals on the patio. If I adjust my expectations, I can find joy in the little moments we do have together. I can treasure memories of past summer adventures while still managing to create more, perhaps not as monumental, but just as good. 

Sometimes we get so caught up in all the necessary trips that we forget how much fun just taking a quick day, or even afternoon, trip can be. Escaping the obligatory routines for just a few hours, whatever that might look like, can be so rewarding. It is more work getting in and out of the car now, but I find that it is well worth the extra time spent, especially when we visit places that hold personal memories.

The past couple of weeks have been stressful with a trip to the ER and then follow-up appointments to try and figure out what was wrong. I needed a break and was really missing weekend trips we used to take either to the mountains or the beach. I turned to my husband and said “we’re going somewhere today; I don’t care where.” and he suggested the waterfront. We are lucky to have a river that is a short drive from our house yet seems to be a world away from our daily lives. Once we got there, we took a walk and found a bench that overlooked the river. We watched people fishing, swimming, sunbathing and picnicking, all things that I used to do when I was younger. Pleasant memories were triggered. The water was soothing and there was just enough of a breeze blowing to keep things comfortable. We may have stayed only about 20 minutes, but I felt as refreshed as if we had spent the entire day. It was great.

I am finding that 2-3 hour trips can be as good as 2-3 day trips used to be. Getting out of the house to go anywhere takes me away from the duties of CarePartner and helps ease the isolation we both feel thanks to my husband’s diagnosis. And, did I mention that we stopped by an ice cream shop on our way home? A perfect conclusion to a perfect little break, I think we need to do this more often.

My husband has been taking carbidopa-levodopa, also known as Sinemet, for 12 years now. It is the primary medication for everyone who is diagnosed with Parkinson’s Disease, but why? What exactly does it do to his brain and what could go wrong? Also, with so many different presentations of this disease, how can it be that one pill fits all? To get answers to these and other questions, I visited the internet, or more specifically Medline Plus provided by the National Library of Medicine, where I was able to search for the medication by name.

First, I need to understand that all the different challenges of Parkinson’s Disease are thought to be caused by a depletion of dopamine in the brain. I find it fascinating that a deficit of one chemical in the brain can result in such a variety of physical and cognitive symptoms. Dopamine is a neurotransmitter that works to convey messages between other parts of the brain. It makes sense that if the messenger is broken signals go haywire and all systems are impacted. This medication works because Levodopa converts to dopamine in the brain and carbidopa keeps dopamine from being broken down before it reaches the brain. Levodopa has proven to cause nausea so combining it with carbidopa allows for a smaller dosage and less complications. My husband takes 25/100’s which means he takes 25 mg of carbidopa and 100 mg of levodopa with each tablet.

The tablets worked well at first, Then, as his symptoms progressed, they became less effective and he chose to have deep brain stimulation surgery. He still takes the medication, but not as much, which is good because some people have found that prolonged use of carbidopa-levodopa can lead to uncontrolled movements called dyskinesia or other complications. It can cause obsessive behaviors, some of our friends have gotten very interested in gambling or shopping thanks to their meds. The medication has always made my husband sleepy and mildly impacts his cognitive abilities. He sometimes says he feels fuzzy headed when he takes it. We can deal with a fuzzy head occasionally as long as it is working to help control his tremors, at least until something better comes along.

For more on dopamine see Dopamine: What It Is & What It Does (webmd.com), and to read the entire article on carbidopa/levodopa visit Levodopa and Carbidopa: MedlinePlus Drug Information.