Oh my goodness, I can’t say this enough. My husband has good days when he is almost like he was pre-PD and then we have bad days, he calls them low-energy days, when nothing seems to be working well. They happen randomly and often catch me unawares. Plans go out the window as I flex my schedule to meet him where his capacity is on any given day. It’s an ongoing challenge as I attempt to be ready for whatever PD throws at us.

Just living everyday requires flexibility. Anything out of the ordinary that happens, even if it only brings a variation change to our schedule, means flexing somewhere to meet the demands of the day. Changes seem be a greater challenge for my husband since he was diagnosed with Parkinson’s Disease and that usually means I need to find the flexibility to support him through it. I can adapt more quickly and easily and then I can help him come along with me.

I still make plans and schedule things but understand that they need to be open to change. My husband’s symptoms are best controlled in a stable environment. His life is often rigid, just as his body can be at times. I am still flexible in both mind and body and I need to use that to make our lives work. I may not always be happy with the changes I need to make, but I understand the necessity of them. Flexibility is the key to meeting my husband where he is at any given time so that I can walk alongside him in this shared journey.

My husband and I watched a webinar on chronic pain and PD yesterday. They specifically talked about lower back pain; it seems that my husband is part of the 80% of People with Parkinson’s who have this complaint. What frustrates me is that many of the things they were recommending were things I had suggested to my husband, suggestions I felt he was ignoring. Now, because he hears about them on a Parkinson’s Foundation program, they are great ideas and worth trying. It was as if he had never heard of these interventions before. Rather than get upset, I simply turned to him and said, “Wow, too bad we didn’t think of these sooner.” He knew what I meant, and we both had a good laugh.

Some of the things that I find frustrating are within his control but many are not. For example, I get frustrated when he needs assistance but won’t take it and also when he needs to be doing something for himself and asks for help instead. I forget that he has good and bad days and his capabilities fluctuate. There are pieces of this disease that can be extremely frustrating for me, the slowness, the stiffness, the soft and muffled speech, the poor posture, all things he can’t help. I hear myself encouraging him to stand up, speak up, slow down and walk with purpose in an attempt to be helpful but I realize he must feel frustrated too.

Probably the most difficult thing about this whole situation is the fact that it is chronic. At this point there are no magic cures and we have accepted there may not be in our lifetime. It frustrates me terribly that no matter how hard we work, and my husband is working very hard to fight this diagnosis, we are not going to win. Parkinson’s Disease will most likely be with us until the day he dies. In the meantime, I am thankful that he is here with me and I will remember to use laughter, not anger, to deal with my frustration while we work together to make every day matter.

Accepting my husband’s diagnosis terrifying, but the reality of it was somewhat easy at first. In those early years, not much was changing. We were both still working, he had a slight tremor but was still very capable of caring for himself. We were able to maintain the status quo, his Parkinson’s Disease was not really impacting our lives. His symptoms, all physical, were progressing slowly. As time went on, however, he began having trouble with his handwriting and his voice got quieter and muffled. Eventually it became too difficult for him to work and he retired. It was obvious that his PD was beginning to control many of the decisions we were making.  

I had to modify my life to fit the increasing demands of this diagnosis if I wanted to continue living with this man. I cut back to half-time at work and then retired early so that I could be at home with him. I started going to exercise classes with him and we joined a local support group. Our social network was changing. It was difficult realizing that we were not going to be able to do all the things we had planned on doing in retirement, but it was our post diagnosis reality and I made peace with it.  

We have given up many of our former activities, yet are still able to find fun things to do together. As it is, I try to plan only one outing or appointment per day, otherwise it becomes too much work for me as the CarePartner and overwhelming for my husband. I also have some things that I do just for me, things that allow me to escape from the responsibilities of being a CP for a little while. I try to be conscious of not exhausting either of us and still find ways to live a full and rewarding life together in spite of PD. My pathway may not be what I expected from life, yet it is what works for me today.

I am great at remembering everything I do wrong and beating myself up for it. I know that we are hard-wired to remember our mistakes so we can learn from them, it doesn’t mean I couldn’t learn just as much from looking at my successes. If I can take just a few moments at the end of my day and look for the positive moments, it reinforces the good times and helps bring balance to my mindset.

It might be something as simple as helping my husband with his shoes or making a call to a friend. Maybe I cooked something really tasty for dinner or took care of a chore I’d been putting off. Whatever those good accomplishments were, they need to come to the forefront of my mind because the missteps are always going to be there trying to bring me down.

I don’t want to live a life of regrets and disappointments, I would much rather live with a positive mindset and a smile on my face. Life can be challenging and it can beat me down, I don’t have to help it. When I really stop to consider my role as a CarePartner, perhaps even make a list of the typical things I do in a day, it is obvious that the positives outweigh the negatives. Maybe it’s time I recognized that.

I thought it might be time for me to share something I found years ago on the internet called “Caregiver Ten Commandments”. I’m not sure who first wrote it, I found it on at www.eldercareathome.org and it was credited to “Unknown”. I hope you find it useful and inspirational. A copy hangs next to my computer and I reread it daily.

Caregiver Ten Commandments

1. Thou shalt not be perfect or even try to be.
2. Thou shalt not try to be all things to all people.
3. Thou shalt sometimes leave things undone.
4. Thou shalt not spread thyself too thin.
5. Thou shalt learn to say “NO”.
6. Thou shalt schedule time for thyself and thy support network.
7. Thou shalt switch thyself off and do nothing.
8. Thou shalt not even feel guilty for doing nothing or saying “NO”.
9. Thou shalt be boring, untidy, inelegant and unattractive at times.
10. Especially, thou shalt not be thine own worst enemy, but be thine own best friend.

I wish I knew who originally wrote this so I could thank them for making my journey just that little bit better!

This is so true, and joy is sometimes in short supply so we need to find it whenever we can. Today I want to take time to recognize the contributions others make to my joy and express my gratitude.

 Where do I start? I am thankful to my husband’s medical team who care and really try to provide the best options for him. I am thankful for my own team as well, my PCP and therapist, who listen and try to help me face my personal challenges. I am thankful for my husband’s exercise coaches because they encourage and enable us both to be more physically fit. I am thankful for family who are here to help when they can and who are always here to listen. They see the changes PD has created in our lives and love us for who we are. I am thankful for the people in my life who help me take care of things, the gentleman who cares for my lawn and the others who come to help when called. They are patient and kind and always offer good advice. I am especially thankful to everyone in our local Parkinson’s community, the People with Parkinson’s Disease and their CarePartners. I appreciate their willingness to share their journey with me through laughter and tears. They show me a way to live with grace in a time of adversity. Their strength, patience and resilience inspires me to do better.

Finally, thank you for reading my words, for giving me an opportunity to explore and share this time in my life. I say it often, writing these thoughts down helps keep me sane. It means so much to me when you take a moment to comment on something I write. It helps knowing that someone else understands the challenges, understands me. And for that I am eternally grateful.

Today is the Fourth of July. There are community celebrations taking place all around us including firework displays. I remember the days when we would go together to see the show or simply out to enjoy the day, that just doesn’t happen anymore. It might be our ages, but I think it is more that Parkinson’s Disease doesn’t recognize holidays, the demands and limitations it places on my husband are the same regardless.

He still needs to take his meds on time and he will want to exercise today since that is the most important component of his treatment plan. He’ll need to rest mid-afternoon as usual. Our daily schedule is pretty structured and when we vary too much it can take days to get back on track. Added to that is the fact that I know what he needs from me when we are at home. Going out to new or different locations takes planning, can be unpredictable and adds to my burden. Celebrating holidays can be very stressful for me as a CarePartner if I let it.

In our house I will try to keep things low-key. We have been talking about the fourth for days and know that it will be noisy and disruptive tonight. We will hunker down and hope for the best. If we want a fireworks show we will watch one on our tv. Not as noisy, no traffic, no crowds and we can be comfortable while it is happening. I wish friends and family a Happy Fourth through social media and encourage them to celebrate as they choose while they can. We choose to have a quiet one.

I can’t walk through my house without seeing something that needs to be done. It may be a dust bunny peeking out from under the sofa or a basket full of laundry that needs to be put away. No matter how hard I work there is always something more calling my name. I often spend all day long working to care for my husband, our house and yard and end up totally exhausted at the end of the day. I drop into bed only to find that it all has to start over the next morning. It’s a never-ending cycle that has more to do with being alive than being a CarePartner. However, the CP part definitely has added to the list. Which brings me to the question, how to manage it all without wearing myself to a frazzle?

The first and foremost answer is to accept that I can’t do it all, but I should be able to manage it if I prioritize my tasks. There are always things that have to happen so those come first. This would include the care I provide for my husband. Then there are things that either need to happen or that I want to have happen. It’s a delicate balance figuring out which things go on which of those last two lists and tends to be flexible as our situation changes from day to day. It’s a good day when I can find a way to do some of both.

Trying to stay in control of everything my life is one way I fight back against my husband’s Parkinson’s Disease. It is my way of saying, ‘No, you can’t win.” I wonder what would happen if I redefined control to include letting go of some things? I can continue trying to do it all and fail, or I can modify the list to find success and contentment. The dust bunnies will be there tomorrow. I can be too if I can only learn to let go and let them be.

We were headed to an appointment with my husband’s neurologist yesterday when I finally found the courage to mention that I had noticed a new odor on him lately. It’s not overwhelming and only happens when he has been sweating heavily, but it reminded me of the CarePartner in the United Kingdom who swears she can recognize PD by the way a person smells. What I realized in that moment is that there may be physical changes brought about by this disease that my husband doesn’t even recognize. If I don’t mention it to the doctor, who will? And, what if it isn’t related to his PD diagnosis?

When I brought the subject up my husband admitted that he too had been noticing a more distinct odor. After our talk, he was the one who mentioned it to the doctor and had me chime in. What I was afraid would be an awkward conversation went okay. His neurologist shared that she has heard of this happening and that it usually has to do with the changes in the microbiome of the skin. The  sebaceous glands secrete more sebum which is where the PD smell originates. She did suggest that we mention it to his PCP as well just in case she might want to look into other causes but really felt it probably was one of those lesser talked about symptoms of PD.

When I see something new or different happening in my husband’s body, I need to stop worrying about whether it would embarrass him and speak up. It is important to discuss everything I notice, no matter how small, first with him and then with his Neurologist and PCP. Changes are going to happen and we need to be on the same page if we want to understand the causes and work to minimize the impacts. We can’t address a challenge unless we both are aware of it. If I make sure to let everyone on the team know I’m seeing something new, then we can face it together.

To read more about this study visit Musky Smell and Parkinson’s Disease | Psychology Today.

I have a gift for worrying about things that are totally outside of my control. I think I inherited it from my mother but that may just be an excuse. I worry about the world, the community we live in, problems facing my family, friends and acquaintances. I often take on another person’s worries and set aside my own issues while I look for solutions for them. It isn’t that their challenges are more important than mine, rather that it gives me an opportunity to escape from my stuff to work on theirs. When I try to fix other people’s problems I am just avoiding my own.

Caring for a loved one with a chronic illness is not a picnic. The task is much bigger than I ever imagined and comes with a whole boatload of potential worry. I am anxious about our health, our home, our financial welfare. My primary concern is always about our future and “what will tomorrow look like?” With Parkinson’s Disease in our lives, we can never know for sure.

My personal journey contains enough challenges without adding additional burdens. I need to be able to differentiate between those things in my life that I am in control of and those I’m not. I want to be able to express my concerns to other people, share my thoughts, maybe discuss options and then let it all go. Given the chance, everyone has the ability to find their own solutions without my intervention or worry. Just as importantly, I have to stay focused on what matters most when I am not trying to fix things for everyone else.