I was reminded of this at a recent support group meeting. Looking around, I was surrounded by my peers in the other CarePartners in the (Zoom) room. My husband, on the other hand, was surrounded by others with this disease but their differences outweighed their similarities. One has high blood pressure another low, one has vison problems another hearing, my husband faces mostly physical challenges others are working through cognitive issues. Treatment plans range from Sinemet to CBD and the one or two who have had Deep Brain Stimulation. They all have Parkinson’s Disease, but the symptoms have presented uniquely in each and every one of them and most also have other factors at play. While I think this group does serve him as a social intervention, I am not sure whether he gets a lot of help on managing his particular symptoms.

This CarePartner group, however, is very much my team. These are people who know me and understand the shared challenge of watching our partners fight this disease. While there are differences in what our People with PD face, our lives are very much the same as we continue to love them and care for them. I know that they can identify with the days when I am exhausted by the needs of my husband and my home. I know that they get me when I say that I can’t take on any more at this time because my plate is too full. I know that I can turn to them when days are dark and they will help me see my way through.

My team may not include professionals like my husband’s does, but my people are experienced and compassionate with a wisdom born only of living the journey. They are walking a similar path to mine and, while they may not be on the exact same trajectory I am, they can still reach out and take my hand to help me along. I can only hope that I may be the same helping hand for others as we all move forward to wherever this life as CarePartner is leading us.

This is a reprisal of something I wrote a few years ago. I wanted to share it again in honor of World Parkinson’s Day on April 11th, I hope you enjoy reading it.

I have known of Parkinson’s Disease for about 30 years now. My father was diagnosed with it, and I tried to help my parents as he struggled with severe cognitive and physical symptoms. I felt that desperation when, no matter what we did the illness progressed, and he passed away in just a few years.

When my husband was diagnosed with PD we were somewhat surprised but also thankful to have an answer for his tremoring. Unfortunately, as his symptoms progressed, it became so much more. We found that Parkinson’s could easily take over our lives with a strict schedule of medications, medical appointments and exercise programs. Someone once asked me why we didn’t just forget about it for a while; if only it were that easy.

Instead of forgetting about it, we are learning to live fully with it. We have accepted that Parkinson’s is going to be with us for the rest of our time together so we might as well make the best of it. My husband is open about how he is feeling, and we build our days around his needs. After all, can’t we both learn to enjoy a nap after lunch? We continue most of our activities, albeit at a slower pace, which makes us appreciate them more. We have decided that this disease will only limit us as much as we allow and we are not going to allow much!

I’m having one of those today. I was restless last night, didn’t sleep well, then this morning I woke with a headache and a general feeling of lethargy. I would have been perfectly happy to curl up in bed and read a good book today, instead I have responsibilities to my husband, our pets, and our home so I am up and taking care of things. But, I am only doing those things that absolutely have to happen and am taking rest breaks regularly. I am allowing myself to have that low energy day and recharge so I will be able to face tomorrow at full power.

The first thing I did when I realized I wasn’t feeling great was to tell my husband. He needs to know why I am not as attentive and understand that I may need his help more than normal today. He is going to notice that I am acting differently, I want him to know why and not think it is something he has done. Actually, he has lots of ups and downs with his energy levels thanks to his PD so this is a time when he can really relate to what I am feeling.

Making it through today may mean leftovers from the freezer for lunch and take out for dinner, but that is okay. I could try to push myself and ignore what my body is saying but, from experience, all that will do is prolong my recovery from whatever is causing this. I will put off as much as I can today with the hope that tomorrow will be a stronger day for me. And it it’s not, oh well, who says I can’t take two easy days in a row as long as my husband is safe, fed and happy?

Sounds good, doesn’t it? The only thing I would add is to be aware of my limitations because my brain often thinks I am capable of much more than my body can handle. I’ve been working in my yard for the past couple of weeks and, even though I exercise regularly, I have developed aching muscles I never knew existed. I guess success, in this case, also has its cost.

New tasks don’t have to be physical. I was part of a support group yesterday where we discussed the administrative pieces involved in caring for someone with a chronic illness. Appointment scheduling, insurance hassles, advance planning and prepping for whatever might go wrong. It can be daunting and often leads to piles of papers on desks or stuffed in drawers. How do I tackle a task that seems to be growing and shifting every time I look at it?

I have decided to tackle things one step at a time, whether it is yardwork or paperwork, and let the rest go. I will start by making a list (I love lists) of the things that need to happen now. There are yardwork priorities, but it might mean only weeding one section at a time. In-home, it might mean connecting with part time care that could expand to more as the needs arise. Next, I will look at longer-term issues, things like hiring help to do bigger jobs outside, finding respite care or creating emergency plans for the unexpected “what ifs?”. Finally, I will revisit end planning, which we hopefully won’t need for a long time, but who can really know? Breaking everything down into manageable bits gives me the confidence to overcome these challenges. Creating a successful strategy that matches my capabilities will bring me through anything PD throws my way.

When I started writing, I sat down each morning and wrote one positive thought about what was happening in my journey as CarePartner. Then, when I started sharing my blog, I took those thoughts and expanded on them. It is interesting for me to revisit words I wrote years ago and find that they are still relevant today. I thought I might share some of my favorites with you today. Here’s hoping they bring you some peace…

Some days are easier than others but no matter how many challenges you face, there is always something positive if you look hard enough. Find it and hold tight!

Minor setbacks will happen, don’t overreact, tomorrow will be a better day.

Anger and frustration will be a part of your journey, don’t let them be the only part.

Your life needs to be about more than caring for your partner. Find things that bring you joy and do them, then share that joy in all you do.

Remember that even in the darkest hours, there is good happening in your life, if you only want to reach out and find it.

Sometimes you will get frustrated and act in less than kind ways. Stop judging your actions in those moments and remember to forgive and love yourself because this is your journey too.

Moving forward, even when the way is not certain, keeps you going and any movement is always better than none.

Remember to be grateful for everything you have and experience throughout the day today.

Joke, play, be silly, laugh with your partner whenever you can. Enjoy each other and the world around and let your journey be filled with light, not darkness.

It can also help you understand when to call the doctor because things just don’t seem right.  Before you read this, I need to say that I am not a medical professional and none of this is meant to be advice on medications your Person with Parkinson’s should or should not take. My husband has been taking Carbidopa-Levodopa for over a decade now. He uses a nasal spray for chronic rhinitis (runny nose), but no other prescription medications. He takes vitamins b, d, and an iron supplement as recommended by his medical team. It is important for me to know all of this because I can watch for contraindications between the meds he takes, at this time there are none.

Carbi-dopa is designed to increase dopamine levels in his brain and is a standard for most people with Parkinson’s Disease. Other types of medications are often prescribed for PD based on symptomology and the direction the illness is taking. For someone with motor issues, like my husband, dopamine agonists can be used either in place of the carbi-dopa or alongside it. These meds are designed to mimic what dopamine does. Other types of medications that might be used are COMT Inhibitors or Selective MAO-B Inhibitors designed to block enzymes that interfere with normal dopamine levels in the brain and compounds that impact the neurotransmitters in the brain to stimulate or block dopamine. There is another list of medications that cover non-motor symptoms of PD, thankfully we have not needed those yet. All of these drugs, including the basic carbi-dopa, come with side effects that can be as bad or worse than the illness itself and it is essential that I am aware of what could go wrong.

My husband’s neurologist has suggested that he try some of the other medications in addition to his basic regime to extend the benefits of the carbi-dopa. We talked with others in our support group about their experiences and found that there was no real consensus. Some were using dopamine agonists with success; others swore by the inhibitors they were prescribed. When he agreed to try an agonist, we found that he was acting out in his sleep, his brain was foggier, and he was drowsy all the time. The alternative treatment he finally settled on was Deep Brain Stimulation with the outcome that he could take less medication rather than more.

It is a challenge to know what is best for my husband. It is also important to remember that his responses to any of the meds are simply his responses and do not indicate that it would or would not be good for someone else. Just as this disease affects everyone differently, the treatments have different outcomes for each individual. I wish there were a pill that could take it all away, until that day comes I will continue to do my research and consult with our medical team to make sure that his treatment is safe and working for him.

The topic of medication is complicated and should always be a decision you make with the advice of your Person with Parkinson’s medical team. For more information on the different types of medications available please visit Approved Medications | American Parkinson Disease Assoc. (apdaparkinson.org) found on the American Parkinson’s Disease website.

My husband buys me a daily calendar for Christmas every year and I keep it next to my computer. The theme changes, for a few years I was looking at cute cats then it was sarcastic comments, this year it is inspirational quotes. Today’s quote comes from the writings of Buddha, and I thought I would share because it is so pertinent to my life. It reads “Each morning we are born again. What we do today is what matters most.” My role as a CarePartner is exactly this, living in the day, in the moment, ready to face whatever happens because this minute is what matters most.  

These gentle words emphasize the importance of letting go of yesterday so it will not impact today. I must be able to look at what is in front of me with fresh eyes. My husband’s condition fluctuates daily and my role must be fluid to adjust, not necessarily a bad thing. It simply calls me to give appropriate value to each and every moment that I have with my husband, reminds me to treasure my time wisely, reminds me that life is to be fully experienced.

In addition to the calendar my desk hosts a picture of myself mastering a zipline from a couple of years ago that reminds me I am adventuresome and capable. I have a copy of the Caregiver Ten Commandments to remind me that I am not invincible, and I have a picture of my son to remind me that I am leaving a loving legacy behind. My life can be meaningful every day if I open my mind to it and surrounding myself with positive energy is a great way to start. What I do today will matter and then I will start again tomorrow empowered by positive thoughts and intentions.

It has been a difficult couple of years as we navigate a pandemic and Parkinson’s Disease. First, we were in lockdown with little or no outside contact, then I learned new computer skills as we all started “zoom”ing. The on-line connections helped me stay active in our PD community, but I really missed the one-on-one meetings. Finally, we are getting back to the point where we can meet in person again and I am so excited to see our friends. The support groups are a lifeline for me, especially in this uncertain Parkinson’s world.

My outside commitments include volunteering at a local museum a couple of hours every week. It is an opportunity for me to leave my role as CarePartner behind and take on other responsibilities. The people at the museum don’t know my husband and are not actively involved in our story so they relate to me differently. I am an individual there, a piece that can get lost when you are caring for someone with a chronic illness.

I treasure the times I get to connect with my husband outside of our home that have nothing to do with his diagnosis. We recently visited the Oregon coast and are planning a fall trip to Hawaii. Mr. Parkinson’s disease comes along, but the change in environment allows us both to escape and see a different side of our relationship. Outside activities are essential reminders that we are bigger than this illness and that life can be about so much more for both of us.

Sometimes other people offer me help and I am not sure how to respond. It’s not that I think I am doing great on my own and don’t sometimes need the help, it’s more that I feel okay in what I am doing. Those times when I really need assistance are, thankfully, few and far between. I am also hesitant to ask for help when it is my husband who needs the support and I feel like I am being disloyal or breaking a confidence. It’s an interesting conflict as I try to figure out when and where I can use help without impacting my husband’s individuality and dignity.

It is often difficult for me to acknowledge that I can’t do it all. I want to be able to care for my husband and house on my own, but, I’m not wonder woman and recognize that my expectations are too high. Friends and neighbors offer help from yard work to visiting with my husband to allow me to run errands. I am learning to accept some things now, and will keep the other names and numbers in my back pocket. We may not need their help right now but who knows what tomorrow might bring?

I appreciate that the offers come from concern, respect, and friendship for me and my husband and am so grateful to have people in our lives who care. We are lucky because our needs, at this place in our journey, are relatively small. Having a network of caring people are out there for when things change or progress lightens my load tremendously as I continue doing my best to make it through each and every day.

We went to dinner at a new restaurant the other day. I had to park a block away and my husband seemed a bit concerned about the walk. I encouraged him, offered him my arm which he quickly declined, and off we went. The sidewalk was broken and uneven, but we took our time and made it there and back safely. And the food was well worth it. Sometimes my husband underestimates his abilities and needs a bit of a push to make it through.

It’s spring and time for yardwork which was always my husband’s domain pre-PD. Unfortunately, there is little he can do outside safely now other than watch me work. I finally had to have a conversation and ask him not to come out because it was too challenging for me to try to look out for him and keep him safe while trying to get something done. I had to pull him back from helping with yard work.

I think of the two-headed llama from the Dr. Doolittle stories known as the “Pushmi-Pullyu”. It has a head in both directions to stay safe from predators as it climbs the mountains of Tibet. An interesting analogy as I think of the pushing and pulling I do with my husband attempting to keep him safe in our environment. I just hope he has the patience of the llama, known to be a very calm and sensitive creature who only occasionally spits at others. I think I can deal with that.