I wear a smart watch that allows me to answer phone calls and texts. It helps me feel good about being away from my husband knowing that we are still able to connect. It also has features that support my safety like fall detection and SOS calls.  My husband also has a smart watch but his is strictly for fitness tracking his steps and workouts. My hope is that he will want one like mine when he realizes the advantages, it’s a remote hope at best. Some of our friends utilize emergency alert buttons you can wear around your neck to help them feel safer. We have smart appliances that make many of our tasks easier and more automated. Our grandson has a car that practically drives itself, that day isn’t too far off for all of us. I do wonder what happens when the devices get too smart for us, but that’s a thought for another day.

My husband had DBS surgery and when we replace his battery/control in a couple of years, I expect it will be adaptive. It will read and respond to his physical needs and adjust automatically as opposed to the current manual control. There is great work being done on other assistive technology devices such as gloves and glasses that may help manage symptoms for some people. Telehealth alone is allowing more access to the medical supports we need. My husband exercises through interactive Zoom classes, something we hadn’t even thought about just 5 years ago.

The newer technologies may be scary but they may also give back some of what PD is trying to take away. Much is happening in the PD world and I need to stay informed so I can help my husband embrace whatever tools come our way that might make our journey easier and out lives better.

Learn more about adaptive technologies and the possibilities at this link Assistive Technology For Parkinson’s Disease (occupationaltherapybrisbane.com.au).

Vacations are not relaxing anymore. We have made a lot of accommodations to our home to make life easier for us and those accommodations can’t come with us. Going anywhere takes more time planning as I arrange for hotels and transportation in advance of any trips. Even with all the careful work in advance, once we get to the location it takes a day to adjust to the new environment. Often, I find that what I was told about the site may not be quite accurate. I think of rooms where the grab bars are being used as towel racks and the only restaurant onsite isn’t open for breakfast. The time the bathroom was so small that I had to stand in the shower stall to help my husband get off the toilet. I always try to plan for the best but still need to be ready for the worst to happen.

Going on vacation is not only exhausting for me, it wears out my husband too. I find that the optimum timeframe for a vacation is 5 days. The first day is travel and the second day is adjusting to the new location. Days 3 and 4 we actually get to enjoy our stay, as much as possible in our current reality. Day 5 we are travelling home and then he spends a couple more days just recovering from the trip while I am getting caught back up with chores. Maybe it just isn’t worth the hassle anymore?

I recently started thinking about what a vacation might mean, what would I need to truly relax? It would be someone else preparing our meals. It might mean visiting a pretty location and taking a walk. It would definitely mean taking a break from chores to sit in the shade and read a good book without feeling guilty. There are lots of local restaurants I want to try, we have some great parks and a lovely riverwalk, I have lounges and a shade tree in my own backyard. I can easily create this at home, I think it’s time I figured out how to take a staycation.

At a recent CarePartner get-together, we were discussing what to do when someone takes a fall and can’t get up. One suggestion was call a neighbor, another was call 911. It was at this point that one of my friends and a former support group leader gave the advice “Give yourself permission to” in this case it was call 911 for help. Sometimes it’s okay to call a neighbor, other times it is best to have a fully trained professional. The important point here is to give yourself permission to assess the situation and make the call you feel is appropriate regardless of what your PwP is saying. 

I think this can be extended beyond emergency situations. There are times when I want to do something and my husband doesn’t agree. I tend to defer to him, especially in issues that involve his care. Something for both of us to remember is that while he knows his capacity in the moment better than me, I can factor in what I have to offer. Our relationship has always been one of joint decision making. That will, unfortunately, need to change as I am tasked with more responsibility. It is time for me to give myself permission to make some of those decisions alone.    

So here goes, my list of permitted activities. I give myself permission to make my own health a priority. I give myself permission to ask for appropriate help when I need it whether it is caring for our home or providing care for my husband, regardless of what he says. I give myself permission to find ways to relax both with my husband and on my own. I give myself permission to grieve the little losses I face everyday as long as I remember to celebrate the victories too. I give myself permission to have a life that includes more than my role as a CarePartner and to know that it’s okay to do that.

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.