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.

Just when I think we have a handle of this disease, PD comes back in a new and different direction. Our latest, no make that my husband’s latest, challenge is lower limb dystonia. He wakes up in the morning with the toes on his left foot curled up and his left leg twisting inward when he walks. It reminds me of a club foot and can make his mornings quite difficult. It doesn’t seem to be painful and usually works itself out within a couple of hours as his medication levels out for the day.

Doing some research, I find there are a few different approaches he can take that might alleviate this symptom. The first involves taking more medication or a longer lasting formulation to keep his dopamine levels higher overnight. He is already taking controlled release carbidopa levodopa before bed, so the only other option there might be to add a dopamine agonist. When he was given one of those before it caused extreme acting out in his sleep and he doesn’t want that again. The other accepted treatment is botox injections, something we are now in the process of trying. 

He had his first round of injections about a month ago. His neurologist gave him a couple of shots in the bottom of his foot and one in his calf muscle. She told him that the drug takes 2-3 weeks to work and that once it does, he should expect to wake up to a more relaxed foot and leg. So far, he hasn’t seen a lot of relief, perhaps he needs a higher dose of the medication? He had Deep Brain Stimulation surgery so that he could take less medication, now he has dystonia and may need to take more? Where is this PD pathway leading us?

                For more information on dystonia and PD visit Dystonia | Parkinson’s Foundation.

My husband and I used to have wonderfully engaging, and often silly, conversations. I remember one road trip along the northern Oregon coast when we created a business plan to sell galoshes for cows to dairy farmers to protect their herds from annual flooding. Between the chuckles, we decided optional cow floaters had to be available too. This was when he was still able to be behind the wheel so the conversation and the drive were very much a shared experience. It’s a memory I treasure. Now, I am the chauffeur and our drives are much quieter, our lives in general are much quieter. We still try to open conversations, commenting on things we might see on the news or read in the paper, but it is happening less every day.

I know that part of the reason we talk less is that we have been together for more than 20 years and, especially during the pandemic, not much new is happening to us. I also believe that the act of holding down a conversation has become more difficult for my husband. He has told me before that the words form in his brain but getting them to come out of his mouth is a challenge. Since it takes more time and effort, he holds out for important communication, not just the everyday stuff.

As he talks less, I find that I am talking more as if I can fill the void with words. But that is exhausting and often meaningless. Instead, I need to understand and accept that life can be quiet, we don’t need to talk all the time. We can still have conversations to make sure that he is practicing his speech and cognitive skills, but galoshes for cows? That is one for the memory books.

I was at a Parkinson’s Support Group meeting yesterday afternoon and they had a presentation about housing and care options in our local community. The presenters serve as advocates for their clients and can help them find everything from hourly in-home care to respite care to full time nursing services in a facility. The service is free, they are paid referral fees by the businesses they recommend. They are familiar with Medicare, Medicaid and Long-term care insurance and can help navigate the financial challenges of finding safe and appropriate care for your Person with Parkinson’s. They even said that they are able to help those people, like us, who are hoping to age in place.

I have been advised by others to take the initiative and visit the many housing and homecare providers in town to know what is available so we can figure out who we like best. This organization knows our county and can provide a pre-screening and serve as an intermediary. I make one call and then they do the leg work for me so that all I have to do is check out available programs that actually fit our needs.

The one comment that really struck home was they cannot guarantee help if I wait until a crisis to call. What works best is for me to connect with them now, when things are going well, and begin a conversation about what our future needs might be. The initial interview lays the groundwork without committing me to anything, so that when I do need help, they know us and what to suggest. Their presentation was informative and motivating and I will be making that call very soon.

The company that came to talk with us advertises as a “no-charge service to help seniors and their families find the right senior housing and care options.” Check the internet for options that might be available and appropriate for your situation.

There are things he doesn’t or can’t do anymore thanks to Parkinson’s Disease as well as things we aren’t able to do together, and I have learned to grieve those losses and let them go. I like to focus on what we can do together and find joy there, rather than worry about what we might be missing out on. I am thankful every day for the slow progression of his illness and the fact that he is still present in my life.

My husband has always been extremely independent, and I know how difficult it is for him to ask for help. I also recognize the importance of my not stepping in until he asks. It is tough to stand by and watch him struggle, yet it is great to see the satisfaction on his face when works through his challenges. Knowing when he usually needs help allows me time to make sure that any assistance I provide just happens naturally. We like to joke or tease, perhaps connect with a kiss or a cuddle, to make the contact about more than the task itself. We refer to it as a toll for the assist. He often tolls me too when I ask him to help out with minor chores.

I have to admit that there are times when I feel guilty because he doesn’t ask me for help very often. I see my fellow CarePartners dealing with more challenging issues and wonder if that will be us one day. Just as I shouldn’t worry about our past losses, it doesn’t help to worry about what the future has to bring. Instead, I need to stay grounded in today and the support my husband needs in his current state. And always appreciate the positive sides of our journey as much as possible, those little things like listening to him prepare for his day.

My thought here is don’t procrastinate too long or the piles get too high, something I know from experience. Facing those piles of unfinished business in the middle of a crisis can make them seem unsurmountable. It’s the little things that I am talking about, things that could be handled with a letter or a phone call. Especially things that might need input from your Person with Parkinson’s since they may not be able to provide that at a later date.

My husband and I weren’t married yet when we bought our home so the title is in my former name. It has always bugged me, but never enough to do anything about since I expected it would be a hassle. I finally realized that putting it off could complicate things later. Deciding to move forward, I learned all I needed to do was submit a copy of our marriage license to the appropriate county office. It was a much easier process than I anticipated and I wish I had done it sooner.

We have been looking at other things to streamline our lives that include consolidating our credit cards into one account and closing those we are no longer using. My husband worries that this can impact our overall credit rating, but I think simpler is better. My goal is to declutter our personal/financial lives by eliminating unnecessary items. Everything that is left needs to be in both our names with me as primary contact. Life will become more complicated as we age and my husband’s disease progresses, I need to do whatever I can now to simplify things for our future.