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.

Spring is coming and with it all the extra duties of lawn and garden care. These are things that I can enjoy as long as I don’t try to tackle them all at once. If I can remember that the weeds always win, it’s nature’s way of reminding me who is really in charge, then I can work on them with a light heart and find pleasure. I am even finding ways to make peace with the moles who invade our yard from time to time by filling their holes with cat litter. It’s a win-win for both me and the cat. When it all becomes too much, I need to consider hiring help, because my role as CarePartner is full enough, I really don’t need to add full time gardener to it.

It is so easy for me to let life become overwhelming. I say let, because I have a choice about how much I am willing to take on. I know how much spare time I have during the day and when there might be opportunities to do extra tasks. We have a pretty strict schedule and taking on something new will mean that I have to give something else up, I have learned to accept that and prioritize my choices. There are things I do for and with my husband that cannot be changed, I understand and work around those. I also recognize that sometimes everything has to go by the wayside except caring for my husband, and I need to be prepared for those times too.

No matter how hard I try, there will always be more work than I am able to reasonably finish. I have been known to push myself to the limits and then pay for it with exhaustion and an achy body. My husband pays for it when I am cranky and too tired to be present for him. It is not healthy for either of us and is a signal that I need to slow down or look for outside help.

Spring is a time when I can look forward and create a realistic plan for the summer months. I can choose to care for either my yard and garden or myself. I think this year I will do minimal gardening so that I can spend more time enjoying the nice weather with my husband, not with the weeds.

This is tough for me. I love the life I share with my husband but also need something more at times. I recognize that my outside activities and interests bring more to our relationship, but I also struggle with feelings of guilt for doing things without him. I find myself not doing things that I want to do, things we would have done together pre-PD. I am letting my husband’s disease create limitations on my activities. Instead of going ahead with my life and bringing the experiences home to share with him, my guilt denies that opportunity for both of us.

We just returned from a trip to the beach. I enjoy walking along the shore watching the birds and listening to the surf. My husband can join me for short walks but a sandy beach is difficult and wears him out quickly. Even our Nordic sticks can’t offer much support in that environment. On this last trip, the closest I got to the beach was a brief period on a bluff overlooking the sea. We took a nature walk on a trail that led to the beach, but only made it about halfway before he needed to rest so we turned back.

How do I break through my self-imposed guilt barrier to open the conversation? In the example above, I tried suggesting alternatives to my husband but he didn’t want to sit in the car while I walked on the beach and not all beach access is handicap accessible. If I am walking, he wants to be walking too, I get it. So, rather than argue the point, I just didn’t go.

I know that my husband is not intentionally stopping me from doing things, I am doing it to myself out of a misplaced sense of guilt. I am not sure what the answer is going to be, but I do know that we need to have an honest and open conversation about this issue. If I can only figure out how to get it started.

We are headed out to the beach later today. We’ll be spending a couple of days, relaxing and just enjoying the change in scenery. My husband asked what I wanted to do while we were there and all I could think of was to read a good book, eat some good food, and nap whenever I want. I’m sure we will also go for a walk on the beach or maybe do some whale watching. Most of all I want to escape our day to day lives for just a little while and leave some of my worries behind.  

I’m looking forward to letting someone else cook my meals and pick up after me even if it is only for a couple of days. I am looking forward to not having to care for the pets or the house. I am looking forward to having a break. I know that I will still have responsibilities as a CarePartner but they will be different and I look forward to the changes.

I love the beach and I plan to find time to take care of me even if that means going out for walks while my husband is napping in the room. We both have cell phones so we are never totally out of contact. I plan to grab as many moments as I can so that when I come back, I am refreshed and ready for whatever PD brings next. And, I will be ready to plan our next outing in a couple of months, who knows where we will go then?

My husband and I have discussed this before, and we have all the correct documents in place so either of us will be protected financially when the other dies. We addressed what should happen if we both went at once, how our children should divide our assets. We shared our plans with our children including copies of all documents for each of them. They have contact information for the attorneys who helped us in case they have questions. What we don’t have is a comprehensive list of what to do and who to contact when one of us does die, we don’t have an end of life roadmap.

We each have multiple sources of retirement income as well as investment accounts. We both are active on social media and have accounts that would need to be closed or deleted. There are checking accounts and credit cards that are connected to automatic bill payment programs. There is real property in both of our names and shared debts. I don’t want either of us to have to think about how to take care of all of this during a time of grief. Hence, we need a map to follow.

 Life is complicated, death even more so. Beyond funeral planning, what else needs to be done? I googled “Put my house in order” and found several documents that consolidate all the information needed in a clear format that could be downloaded for free. I also came across a document on the National Institute on Aging website called Getting Your Affairs in Order that outlines steps I need to take to get things started. I don’t want to leave a mess behind when I go nor do I want to be caught in that same mess should my husband go first. Now is the time to do whatever I can to make sure we are ready for end of life challenges no matter which one of us is left behind to deal with them.

I have those days, I think we all do, when it seems like nothing is going well and it is all I can do to keep moving let alone smile. I just want to push through the things I have to do so that I can get to tomorrow and, hopefully, a better day. It may be that my husband is having a bad day or it may be that I am tired and feeling overwhelmed for some reason. The negative energy being generated on a “bad day” for either of us easily results in grumpy interactions and conflicts. It is not a healthy environment for my husband or myself.

It seems too basic to simply say “keep smiling” but, believe it or not, it can help. When I am facing a challenging situation, I try to remember to take a deep breath and put a smile on my face. I know that it is really tough at times especially when I am struggling to accept the changes this horrible disease has brought to our lives. The simple act of smiling resets my attitude, helps my husband relax and reminds my brain that I am in charge.

Staying positive doesn’t mean that there will be no tough times, it simply means that I am accepting the concept that I can handle them. There will be times when I am positive that I need help and times when I am positive that I need to walk away, both part of maintaining a positive and supportive attitude. I am strong and resilient, stronger than PD and more resilient than the worst of the symptoms that are slowly taking over my husband. I can be here for him and for me, together we can and will fight this with a smile and a positive mindset of what we can do to live more fully.