I was at our monthly CarePartner get-together this past week when our conversation turned away from Parkinson’s and to a more controversial topic. It was an interesting discussion because even though our group is relatively small, we had 8 at the table, different viewpoints were represented. The thing I was most reminded of was that this disease can hit anyone at any time. It is thought of as a disease of the elderly, but that is not true. It strikes men more than women, but it appears that statistic is changing. It is now reported that approximately 40% of those diagnosed are women, 20% are under the age of 50.

There are over 10 million people worldwide diagnosed with this disease. PD crosses all races, genders, ethnicities, socio-economic groups, religions and political affiliations. When I add in family members who serve as CarePartners, it would be ridiculous to assume that we all share the same ideologies. Which is why I shouldn’t be surprised to learn that even in our small group there are disagreements about politics and social issues, yet we all stand together to support one another in this battle.

Our backgrounds have been very different but our paths have crossed now thanks to someone we love being diagnosed with Parkinson’s Disease. I don’t know why we are here, but you should know that even though I may not vote for the same politician or share your personal beliefs, just as you may not like some of the things I say or do, I will always be here to support you in whatever way I can in your personal journey as a CarePartner.

The statistics I mention come from an article I found on the PD Avengers website. It can be found here Not your Grandfather’s Parkinson’s Disease by Rebecca Miller – VISIBLE Magazine.

Over the years since my husband was diagnosed with Parkinson’s Disease, I have learned so much about this disease, but I fear I have forgotten as much as I have retained. I have stacks of books about PD and pamphlets with information about local and national resources. I know more than I ever thought I would need and yet I still find myself stumbling when facing a new or unexpected situation. Maybe it’s time to go back to the basics.

What were some of the things I learned in the beginning? I remember a workshop about helping him get out of bed and in and out of cars but it wasn’t relevant at the time. Thank goodness I saved all of the handouts. I have a copy of Every Victory Counts from the Davis Phinney Foundation and Coping and Caring, A Caregiver’s Guide to Parkinson’s Disease from the Parkinson’s Foundation. I even purchased a copy of Parkinson’s Disease for Dummies but have since given it away. I read all of these books but didn’t need the information at the time as it didn’t fit with my husband’s symptoms. I think it’s time to revisit those materials, looking specifically for what we need in our journey rather than try to absorb it all.

The thing I have held onto over the years is the knowledge that Parkinson’s Disease is going to look different for everyone who has it. That means that everyone who gets to be a CarePartner will also have a unique journey all their own. There are some basics I need to embrace, things like “don’t blame the person, blame the disease”; “don’t try to do it all yourself”; “look for and use supports within your community”; and always “put your own care first”. Hopefully, the other practical tips will be available for me when, and if, I need them.

For some great basic tips on caring for someone with Parkinson’s Disease see Practical Pointers | Parkinson’s Foundation.

My challenge today is going to be an opportunity to let go of worry about my husband’s issues with balance. I will start by looking at it as an adventure. It will be an opportunity for me to practice being alert to his movements so I can help him stay safe. Wow, what a bunch of baloney! I can be as alert as possible, but I can never know for sure when he is going to go down. Even if I am there, I can’t stop it from happening, I can only watch and hope he doesn’t hurt himself. It’s anything but an adventure as I hold my breath to make sure he is okay.

It has been an opportunity to learn that the most likely place for him to fall is in the bath or bedroom. The space is limited and he tries to turn too sharply. We both know it but that doesn’t change the fact that he sometimes forgets. The second most likely time for a fall is when he is exercising. He struggles doing an exercise called “sit to stand”. It’s a necessary move if he wants to stay mobile but it can be difficult. A lot of the time he will get all the way through the exercise segment and then fall when he is getting up from the chair for the next activity. I am always in the room with him when he is doing these and have removed as many obstacles as possible to make his fall safer but we both know it is going to happen some of the time.

 Which brings me back to the adventure and learning theme. What we have both learned about PD is that it is completely unpredictable. The adventure is in trying to look at all options and prepare for anything. As far as relieving my burden, I think accepting the inevitable rather than fighting it may be the best thing. Balance issues are going to be a part of our lives with PD and gravity always wins. The transformation I made in my thought process is the understanding that I don’t need to constantly worry about being ready for everything because that is impossible. I just need to be ready with a helping hand whenever those things happen.

I recently came across a quote attributed to Henry Kissinger that reads, “There can’t be a crisis next week, my schedule is already full.” I can identify with his words only I would amend it to say there can’t be a crisis today because I live with a full schedule. Granted the situations he was referring to were global in scale and my crises are only within my world. It doesn’t make them any less overwhelming for me.

One example from this past week. My husband got a new pair of shoes on Thursday. He insisted on getting a size bigger and they seemed a bit loose but he felt they would be okay. He sets up for exercise on Friday wearing the new shoes and before he can even get started takes a fall. He hit his head and shoulder on the way down, no bruises yet. He missed exercising and I spent the rest of the day watching over him to make sure he was okay. I am not sure it was because of the shoes but they are going back and we are getting the smaller size.

It doesn’t take much to switch a normal day into crisis mode. A fall, a choking incident, or even just an off day with his meds. Things outside our PD world that need my attention fall away and I am focused fully on caring for my husband. Our reality is that these things will happen and I just need to remember that I can handle them. No, let me rephrase that, we can handle them. Fighting PD is a team effort for us and I rely on my husband to tell me when he needs additional help as much as he relies on me to provide it. Getting back to Mr. Kissinger’s remark, Parkinson’s Disease- bring it on! We’re crisis ready here.

And remind yourself that you are always doing your best in a very difficult situation. I don’t take enough credit for the things I do. I am my biggest critic, always wondering whether I made the right decision about something or if I couldn’t have done it better. I hold unrealistic expectations for myself and don’t acknowledge the good that I am doing everyday. I am not very loving when it comes to me.

How can I change that? First, I need to do just what it says above, I need to use my environment to remind me of the things I do that matter. I have several mirrors that I look in throughout the day, I think I will post notes to me on them. Positive thoughts like “You got this”, “You are strong enough”, or maybe just “You’re doing it, good job!”. I write in a journal on a daily basis, I need to start making notes about my accomplishments, not just the challenges or the failures. I need to accept compliments from others for what they are and just say thank you rather than brushing them off.

The bottom line is that I really need to start being kinder to myself. I would never treat someone else the way I treat me. If I can switch my thinking to consider what I would say to a friend if they were in my situation, I believe I can stop being so critical. I hope so because underneath all the doubt I am an amazing woman with multiple talents, I just need to embrace them and continue on in my journey.

We went to see a documentary about Michael J. Fox and his journey with Parkinson’s Disease. It was interesting and inspiring as he shared both the dark and the light sides of learning to accept and live with a degenerative and progressive illness. I won’t tell his story other than to say that I noticed his low times make our struggles look like a walk in the park. But it isn’t. My husband’s challenges and my challenges in caring for him are just as real as those Michael and his wife face and I need to be sure I don’t forget that.  

One of the positive aspects of our situation is that my husband wasn’t diagnosed until he was in his late 60’s. He had already retired from a couple of careers and was working on his third when the tremors started. He was able to continue working for several years before his symptoms and age finally forced him to quit. He still managed to stay active with exercise and activities around the house. This continuous engagement has helped him stave off the disease and actually made him healthier than he might have been without Parkinson’s Disease.

This journey can be very depressing if you let it, my husband chooses not to go there. We find things we can do rather than lament things we can’t. We blame the disease and not the person when things go wrong. We find time for fun things be it going to a movie or just taking a short walk in the neighborhood. We appreciate the many good friends we have found thanks to his diagnosis both in and outside the PD world. We respect each day we have together a little bit more because we understand how precious our time is and that we could easily lose it all. We put our smiles on and continue fighting this battle together because, after all, what else is there to do?

We live in an old home that occasionally needs work done. This means having contractors either in or around our home who work on their own schedule and disrupt our lives. This week our drive and entryway are being replaced. They have been breaking up concrete and hauling it away with lots of noise and even some ground tremors. Needless to say, my husband is not napping while they are here and both of us are stressed by the constant sound. He mentioned that his balance is worse than normal and I noticed he seems to be interacting less, I suspect because he is tired. His PD symptoms increase in relation to his levels of stress. It’s not been a fun couple of days. Thank goodness the contractors will finish soon.

We planned for this but really couldn’t have done much to lighten the load other than stay somewhere else while the work was happening. That would add the stress of being in a strange environment so that really isn’t a great solution. I am trying my best to keep things peaceful inside the house. Our meals have been on schedule but that is about all that I can do to minimize the disruptions. Things are going to be challenging here for a while longer and I just need to stay calm myself until it is all done.

Life can’t always be controlled, there are going to be times of disruption and stress. I want to talk to my husband’s neurologist to see if she has any suggestions, perhaps we should be upping his meds a bit when we know things are going to be stressful? It might be time to talk with my doctor about something to support me during these stressful times, perhaps an anti-anxiety med? In the meantime, we have earplugs and our evening glass of wine. And we’re going to have a brand new driveway soon so it will all be worth it.

My husband had his annual eye exam recently and I was so excited because his ophthalmologist was able to answer my questions regarding PD. She spoke about potential dry eye issues and explained that some people experience double vision. She suggested blinking exercises to help lubricate his eyes. Then she gave him a prescription for bi-focals and sent him on his way. I don’t think she knew, even as we didn’t, that bi- or multi- focal lenses create a unique challenge to his brain and can actually increase his risk of falling.

According to Ali Hamedani, MD, MHS, Professor of Neurology, Divisions of Neuro-Ophthalmology and Movement Disorders, Perelman School of Medicine at University of Pennsylvania in her article How to Spot Parkinson’s Vision Changes on the Parkinsons’s Foundation website, my husband’s diagnosis of PD slows his eye movements just like everything else in his body. The lack of dopamine in his brain means he struggles to move his eyes within small spaces such as the focal points on corrective lenses. Most neuro-ophthalmologists recommend people with PD use single focus lenses, a separate pair for reading and walking. Perhaps more of a hassle but a safer alternative.

He can use the bifocals for reading and watching tv. He is safe with them as long as he stays seated and says he will be keeping the glasses. I plan to share the articles listed below with his opthalmologist to better educate her on the issues he faces. We are also going to be looking for a pair of single focus lenses that will work for him while walking so he can once again enjoy the scenery around him rather than just see a blur.

To learn more check out https://www.parkinson.org/blog/awareness/vision-changes; Parkinson’s and Vision: 6 Things to Know (davisphinneyfoundation.org).

The first and most obvious place where I need boundaries is in my home. What are my boundaries with my husband? Letting him know when I am tired and cannot handle anymore. I set boundaries around what I am willing to take on as a chore and what needs to be delegated to someone else. I have established time and place boundaries that allow me to have some privacy during our day. The key in keeping these boundaries is communicating clearly, concisely and sticking to them.

In addition to boundaries with my husband, I also created boundaries with my family. I love my grandchildren but don’t babysit them anymore because I have found it is too much for us to deal with. I realize this is not true for everyone and am jealous of those who can do both, I have accepted that I just can’t. I like to host all family events at our house because it is less stressful for us, my husband feels more comfortable and can rest when needed. I ask for help from family members when I need it and try to communicate clearly regarding our situation in living with PD.

I also need boundaries with the outside world. Everyone knows that my husband and my home are my priority. I volunteer at a local museum with the understanding that I can be there as long as all is well at home. I help out with our local support group but do it on my own schedule and around other things that I need to do for my husband.

It has been important for me to actually think about these issues and mentally create boundaries. Once I had the basics figured out, I was able to share them with the appropriate people in my life. It has gone well for me as most understand and want to be supportive. These boundaries will need to be reassessed on a regular basis as our journey progresses. They are working for now and that is all that I can ask for.

Some days it is all I can do to make it to bedtime. More often than not, that has more to do with the things I am trying to do outside of my role as CarePartner. It’s the extra things that I do for our house or for myself that add additional burdens to my day. I forget that if I already have a full load, I need to let go of something before I add something more to it. It’s common sense that a full bucket can’t hold any more water, so why do I keep trying to pour more into mine?

Which brings me to the real challenge I face, how to prioritize my day so I can get the most done and not wear myself out. If I am honest, that often means leaving out things that I want to do and just getting through what I have to do. I forget that those things I want to do are important too. The “want to do”s are where much of my self-care lives. If I am choosing between doing a load of laundry or sitting quietly in the sun for a few minutes, the laundry always wins.

I have the capacity to accomplish a lot in my days, I just need to make sure what I am doing balances those things I have to do with the things I want to do. Yes, my days can get tough but I am resourceful and resilient. If I am mindful about the things I choose to do, more will get done and I won’t exhaust myself doing them. By being intentional, I can and will make it through.