My husband’s initial diagnosis reminded me of the difficulties my parents faced when my father had Parkinson’s and I wanted a better pathway for us. Thankfully, we have access to resources that didn’t exist thirty years ago and we went to the internet to see what was out there. We quickly learned to let go of any assumptions about what this diagnosis would mean, there was no standard profile. Even though there are some basics characteristics that lead to the diagnosis, PD impacts everyone differently and the symptoms vary widely. Lots of things could happen, we were already experiencing the tremors, what else might be coming? Some of the alternatives were scary, how would we know what to prepare for?

As we explored the possibilities, we talked openly about the possibility that my husband could be facing advanced movement disorders and cognitive challenges. We did the what if’s and discussed plans for our future. What happens if he can’t drive, what if he develops hallucinations, what happens if I can’t provide the care he needs, we had a lot of conversations and tried to make plans. It was difficult to talk about but we knew it was essential to have the conversations.  We both realized there might be a time when he wouldn’t be able to participate rationally anymore, we needed to be prepared and I needed to know what he would want.

The conversations were difficult and are ongoing, the point is that we have opened those doors. Some of the challenges we discussed, such as driving, have already come and gone, some we may never face. My husband realizes that there may come a time when I have to move beyond difficult conversations with him to make even more difficult decisions by myself and now is the best time for him to provide input. We still can’t be sure where this journey will take us so we continue to talk, we continue to plan, and then we move forward and live each day to the fullest hopefully ready for whatever tomorrow will bring.

Being a CarePartner for my husband has definitely made me stretch and rethink my capabilities on numerous occasions. Who knew I could wield an axe and split firewood? (My father was a lumberjack; he would be proud.) And, while it wasn’t something I thought I would like, there are days when that exertion is really a great way to let go of pent-up stress and frustration.

When I am facing a new challenge, I try to be open to the possibility and take a chance. If I allow myself the opportunity to succeed, I may develop a new skill. I will definitely find out something new about my own capacities. Even if I fail, at least I know I tried and can better determine the help I need to finish the job.

In the example of the firewood, I quickly learned what my limitations are. I can chop smaller pieces of wood with a hatchet and can do some medium chunks with the axe, but the larger pieces need to go elsewhere. I have neighbors with fireplaces and they are more than happy to respond to my “free firewood” signs. The bottom line is that had I not tried, I would have missed a great opportunity for personal growth and some wonderful winter fires.

It is a beautiful day today, the sun is shining and there are light, fluffy clouds overhead. It is inviting us to get outside and enjoy the day. This weather definitely makes it easier to have a positive outlook and teases us with the prospect of better days ahead.

Positive feelings for me can come from something as simple as an unexpected smile or kind word. They can come from a sunny day or even a ray of sunlight sneaking through the clouds and rain. Recently my outlook improved when I received a message from a friend I hadn’t heard from in a while, it really doesn’t take much.

Having said all of that, a sunny day doesn’t change the basics. My husband still needs to take his meds and we need to adhere to our meal and rest schedules. If anything, I may need to be more vigilant as he reacts to the better day and pushes beyond his limits to enjoy it. On the other hand, I don’t want to be the PD police and will try to encourage his fun while we both share a good and a positive day.

My husband has good days and bad days thanks to his Parkinson’s diagnosis. On the good days it feels like we can do anything we used to do; on his bad days, I just want to get the basics done and get past it all. Unfortunately, we can’t know which type of day we are having until it is upon us and this means we always have to keep an alternative plan for the day ready, just in case.

Bad days can look like my husband’s disease is progressing quickly. The other day he seemed rather unsteady on his feet, does that mean that he is losing control of his balance? Do we need to start shopping for a walker? No, what I needed to do was stop and think. We limited our activities, waited and watched. Sure enough, the next day he felt better and more in control.

I used to wonder if it was something we were doing to cause the challenges but then I realized that this up and down happens to everyone with PD. It doesn’t matter if he has slept well or what he had to eat. It especially doesn’t matter whether we have plans or not, the good and bad days will come as they will. I just need to be aware of where he is and not overreact since I know that each day on this journey is distinctive and irreplaceable. I need to remember to treasure them all.

It has been a difficult year, finding ways to meet my personal needs while in a locked down environment with my husband due to the pandemic. I miss our social interactions both in and out of our PD network because they gave me a sense of belonging. I miss being able to do my volunteer work because it gave me a sense of purpose. I miss being able to go out for fun because it made me feel alive.

It hasn’t all been bad, I am using the internet more to connect with others for that sense of belonging and know we will be together again someday. I haven’t found a replacement for my volunteer work, but have gotten involved in additional projects here at home that help with my sense of purpose and get me out of bed in the mornings. I am learning to look for fun in new and different ways and to take advantage of every opportunity that comes my way. We have been using takeout and outdoor dining to explore restaurants in our area.

I know I am the least effective as a carepartner when I am not taking good care of myself. If I am tired, hungry, or just feeling out of sorts, it is reflected in my interactions with my husband and that is not good for either of us. I need to do whatever I can to make sure that I am healthy in both mind and body, and that my needs are met so that I can be here for him when his needs exceed his capabilities, I know he would do it for me. If that means ZOOM meetings and takeout, so be it, I’ll get through.

Living with someone with a chronic illness can mean that you walk on eggshells all the time afraid to upset them or your delicate home balance because, after all, they are sick and not responsible for their actions, right? Wrong. My loving husband occasionally did boneheaded things before he was diagnosed with Parkinson’s Disease and that hasn’t changed. I still get frustrated with him, not with his disease, at times and need to let him know.

If we are going to have a healthy relationship, we need to be able to disagree and, yes, even argue at times to clear the air and move on. I need to be sure that whatever he has done is something he has control over. It is not okay for me to get angry at him because it takes him longer to dress and makes us late unless he has intentionally stalled. It is not okay for me to be upset with him when his tremor causes a spill or a mess unless I have asked him to wait and let me help. It is perfectly okay for me to be angry at him when he does things he knows he shouldn’t, especially those that could be dangerous for him.  

It is a fine line learning how to maintain a positive and respectful relationship when dealing with an illness like PD that can change your partner both physically and mentally. My litmus test for whether I should be angry at him or not is whether what he has done is something he might have done before. If the answer is yes, then we start with “what on earth were you thinking?” If this is not something he would have done before, I assume Parkinson’s is to blame and then we can be angry at the disease together.

When I anticipate some upcoming event or life change, it is usually based on my perception of what it should look like which may or may not be real. I can only work from what I know as I consider what is coming. When my husband was diagnosed with Parkinson’s Disease, I immediately started looking for the same signs and symptoms my father had shown. I was expecting the tremors, followed by freezing, and accompanied by dementia. I was terrified of what this diagnosis could mean for us.

Thank goodness we had a very good neurologist who assured us that everyone’s journey with this disease is unique and we shouldn’t base our future on anyone else’s experiences. As they say, “when you’ve seen one person with Parkinson’s, you’ve seen one person with Parkinson’s”. He and his Nurse Practitioner helped us work through those early years and gave us information about resources and supports that would help us prepare for what might come instead of fearing what we thought would come.

Now, when I start to get anxious or have concerns about something happening within our PD world, I turn to my support group or to the many resources on-line. I look for good information so that I can make positive preparations for anything that our future might bring. No matter which direction this diagnosis takes us, we will be informed, prepared and ready to face it together.

For a good perspective on what a PD diagnosis can mean, check out this Symptom Map from the Me over PD website.

The first step for me was recognizing that changes were happening and that they could impact us both. I had to find ways to communicate respectfully with my husband about my areas of concern that would impact his independence such as driving. We had to look differently at his daily activities and chores he was doing around the house to decide which were safe and where we should find someone else (often me) to take over. We had to accept new realities in our relationship with each other and with the world around us.

Change is inevitable, but we have learned that we can slow it all down. He takes his medications and has had DBS surgery, both necessary and positive actions, yet the most effective thing we have done to counteract the change was exercise. We began working out together and, on days when I am tired or lazy, he inspires me to keep on going. I can’t believe his dedication and determination as he works daily to stretch, cajole and encourage stiff muscles and increase his range of motion.

I have seen many changes in our 10-year journey since Parkinson’s became the third wheel in our marriage. Some changes were due to natural aging, some due to his diagnosis of PD, issues he has had with his shoulder may be a little of both. At any rate, I will continue to honor and accept where he is each day so I can best support him as life moves on for us both.

It is snowing today, it snowed yesterday and will probably be snowing tomorrow. We are snowed in during a pandemic lockdown. If that isn’t an unexpected challenge, I don’t know what is! My patience is beginning to wear thin.

I wrote those words earlier this week and, while the snow is mostly gone now, the storm caused disruption in our lives and it is hard to get back on track. Thanks to the snow, appointments had to be rescheduled, exercise classes were missed, even our daily walks were impacted because you can only do so much when trapped in your house. I am thankful that we weren’t hit as hard as many people in our community, we never lost power and had plenty of food and water. And, the snowy wonderland outside the windows was beautiful to look at, just not for 3 days straight.

Things are slowly returning to normal and I am realizing how much I depend on our routines. I always blamed my husband’s Parkinson’s diagnosis for our tight schedule that seemed to limit what we could and couldn’t do. Now I understand that his schedule is a framework that creates a positive roadmap for both of us as we navigate the daily challenges of both retirement and PD.

I didn’t sleep well last night and yes, I am tired today. The first thing I need to do is tell my husband so he understands if I don’t respond quite as quickly when he calls. The second thing I need to do is consider whether I nap with him this afternoon to catch up a bit on that sleep I lost. The third thing I need to do is let it go.

Just because I am tired doesn’t mean that anything changes in our daily lives. If my husband has an appointment, we must still go. If he has an exercise class, he has to participate. I still need to make sure that there is food on the table for both of us. Activities of daily living need to continue.

Recognizing those responsibilities that can’t be put off, I can now look to see what I might be able to change. Does the laundry have to be done today? Do I have to cook or could we do take out instead? Can we take a short walk with the dog rather than the mile we usually do? How can I make it through this day without exhausting myself so I am ready for sleep tonight and a better day tomorrow?

My husband proofs these postings for me and after reading this he asked “what if I am the one who didn’t sleep?”. I wanted to say “you take an extra nap” but instead just smiled.