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.

When my husband was first diagnosed we didn’t realize that his Primary Care Physician was familiar with Parkinson’s Disease because his father-in-law had it. Even with his personal knowledge, the doctor didn’t recognize the signs in my husband, and we lived with a missed diagnosis of essential tremor for years before being referred to a neurologist. The PCP would later admit that he should have known. I wound up gifting his office with a copy of “Every Victory Counts” from the Davis Phinney Foundation, I hope they use it to make themselves more aware.

At least they weren’t as uneducated about Parkinson’s Disease as the staff at a local urgent care facility. My husband wasn’t feeling well, could barely stand on his own, so I took him in thinking he had a viral infection. The staff at the facility hooked him up to a heart monitor and decided he was having a heart attack because they didn’t recognize that his tremor was triggering the sensors. They called an ambulance and sent him to the ER which nearly gave me a heart attack all because they didn’t know how to properly evaluate someone with PD.

We were pleasantly surprised recently when my husband had his annual meeting with his ophthalmologist. Normally she is very robotic and the appointments are routine. This time I decided to change things up and asked what we should expect because of his Parkinson’s diagnosis. She dropped the doctor persona and immediately responded with a very concise and friendly answer. It was obvious she was informed about the complexities of treating someone with this disease.

I have decided that the best thing I can do as his advocate is be prepared for any alternative we may encounter. I need to have information that I can share or that is easily accessible. It is important for me to take advantage of every opportunity to share our story and educate others about life with Parkinson’s Disease. Let’s face it, most people are going to know someone who receives a diagnosis of PD in their life. I might even be giving them a heads-up on what is coming in their future and it never hurts to be aware.

There is a great tool put out by the Parkinson’s Foundation called the Aware in Care Kit. Click here to learn more.

I had one of those nights last night. We have a big project we are working on here at home and then there are always other things going on. My “what-if” brain was working overtime and wouldn’t let me sleep. By 2 am I had exhausted all rational thoughts and moved into the ridiculous, but it did give me an idea for this blog.

The thing about “what-ifs” is that they either are or are not going to happen, worrying about them doesn’t change that fact. It is good to accept them as possibilities, maybe even consider alternatives should they happen, then let them go. The letting go process, for me, is to write them down along with potential solutions. Making a “what-ifs” list gives me the opportunity to see the challenges more clearly and enables me to put things aside knowing I have addressed them and can revisit should they become relevant.

Moving forward in life is not always going to be easy, smooth or predictable, but trying to outsmart the world will only give me sleepless nights and ulcers. It is also impossible to define every variable for every issue life throws at me. I create lists for work that needs to be done and, within that list, I will add my “what-ifs” column. Life may give me challenges but “what-if” I can prepare for them in advance?  I think that’s a much more useful approach to the challenges I know I will encounter and will keep my brain from circling the “what-if” drain in the middle of the night.

This is tough and can be a potential disaster for you especially if you choose to do things differently. My approach to tasks is to get them done in the quickest and most efficient manner, my husband is much more driven by perfection. I am learning not to try to do things when he is watching because he likes to tell me the “correct” way to do them. He is learning that once he turns something over to me, he needs to back off or he is going to get grumped at. These are simple facts that we are both learning to accept in our changing roles.

We are in the process of hiring a contractor to redo our drive and entryway. I am the one who has to make the contacts and will probably be tasked with supervision of the work as it progresses. Our first disagreement came when I scheduled for a contractor to come and give me an estimate during my husband’s exercise class. He wanted to be there even though being there was simply standing by watching someone take measurements. I convinced him to skip this one because his exercise class is more important and scheduled the next one at a time when he could be with us. Sometimes it’s just not worth the battle.

I have no intention of choosing a contractor or accepting an estimate without first discussing it with my husband. The final decision, however, is going to be mine. While I know how important it is for him to know that I respect his input, it is equally important for me to know that he trusts my judgement. We will have many more opportunities where I will need to take the lead and he will have to let me and it will be with decisions that are a great deal more important than who pours our concrete. We both need to believe that I am capable of making those choices when they come up and be able to trust that I will make them well.

Perhaps I should have listed that third thing first since it is so basic and vital to the role. If I don’t take care of myself, I am unable to do the other 2 jobs. So, this week I am seeing my doctor to check out some pain I have been having in my shoulder. It hasn’t kept me from caring for my husband yet, but I know it is impacting how we interact. I get cranky when things don’t work right and my left arm isn’t working the way it should, I need to get it fixed.

My role of providing care varies  based on how my husband is feeling. On a good day, he needs minimal help because his symptoms are mild and the meds are working. However we do have bad days when he seems to be tired or off and I need to step up my support. It would be great if we could predict when those bad days are going to strike but there really doesn’t seem to be a reason, they just happen. We deal with them and move on.

Being a loving partner is the easiest component of this journey because I loved this man before PD and I will love him no matter what happens. I just have to remember to take the time to let him know how I feel. Parkinson’s Disease may try to come between us at times but I won’t let it. PD will be a challenge for the rest of our time together, the love we share will help us overcome it.