There are days when it is more difficult to see beyond the illness. I am sure it must also be difficult for my husband to remember who he once was. He also has to try to look at me and see the woman he fell in love with rather than the bossy, pushy caregiver that I sometimes become. PD has changed both of us and our relationship is different. Now, more than ever, we need to remember and work on maintaining what brought us together in the first place. Holding tight to that love, even if sometimes it is through memories, can help us get through any current challenges. 

We recently began working out with a new trainer and it was tough. The first day of class, she was moving faster than either of us were able to manage. I found myself pushing my husband to do more, better, faster, when he finally got angry and yelled back that he was doing the best he could with his tremor. I have since realized that it was a difficult workout and if I was struggling, of course he would be even more. I was looking at him and seeing what he couldn’t do rather than the effort he was putting forth. When I stopped and saw how hard he was trying, I realized that he was doing a great job and, yes we both have a ways to go to be able to participate fully, but he was getting the exercise he needed.

If I remember not to look at my husband as someone with PD but to look at him as someone I love who has PD, I find he is still there. We both have adapted to this new reality in our lives but “we” are still here as we continue this journey in love and understanding.

Exercise is an important component in our ongoing battle with normal aging, let alone the additional challenges that come with a Parkinson’s diagnosis. If it is something that we both need, and often dread, why not find ways to address it so we can share the burden? We “encourage” each other by walking everyday and by setting aside 3 mornings a week that we refer to as exercise days. On those mornings, he uses our Wii fit program while I work out in another room so we can each get exactly what we need from the time. We also have memberships at the YMCA where he uses equipment while I partake in a yoga class which allows individual needs to be met at the same time.

Our bodies aren’t the only thing that need attention, we also need to make sure that our brains are working. For intellectual motivation, we read and discuss books and enjoy sharing our local morning newspaper. We like to be aware of what is happening and sometimes the news gives us challenging conversations. We also like to work on crossword puzzles together and try to find time at least once a week for a board game.

We meet social and emotional needs through positive relationships with people both in and out of the PD world. While we share a group of friends who meet casually for dinner or a glass of wine, we each have individual support groups made up of people who understand our personal journeys with PD. We are linked to a loving community that surrounds us and values us both as individuals, what better way to meet those needs?  

There are times when my husband asks for help with basic tasks because he is tired or having a bad day and I step in gladly. There are also times when he wants my help to “speed things along”. At those times, I often encourage him to do it himself because we need to remember that even though some things may be more difficult and take longer, he can still do them. Those tasks of daily living involve muscle-brain interactions that are vital components to his continued mobility, I don’t want to take that away from him.

Sometimes the “no” has to do with something he asks that seems unreasonable and so I have to ask myself if it is something I would agree to if he didn’t have PD? Other times, his requests obviously have to do with his illness and I have to take a moment to determine if it is in his best interest or not? Help can be empowering or it can be enabling, I need to make sure that any help I offer builds him up and encourages his independence, not his helplessness.

Our partnership is based on love, trust and the understanding that we are both here for the duration. All my decisions about helping need to be founded in what works best for both of us and what will help us stay strong as we continue on this journey with aging and PD.

When I wrote this, I was thinking specifically of my partner with PD but now I realize that I do it for so many people. I am always trying to “help” others, maybe because it allows me to avoid my own stuff? I need to step back and remember that people don’t always need help, sometimes they just need someone to listen and let them find their own way through.

It is important that I learn to recognize when I am overstepping and take a breath. Then, I can look at what is really going on and determine whether I am trying too hard to influence the other person while ignoring something important in my own life. It usually means that I need to engage my listening skills, not my helping skills.

This is a time when I need to look inward to see what is going on with me. Why am I trying so hard to “fix” things for this other person? Is there something happening that needs my attention but that I have pushed away? Do I need their help as much as I am thinking they need mine? If I can honestly look at the help I offer as a component of friendship and understand how to be a support for them, I can in turn ask for their input when I am faced with difficult choices. When I am open to building a mutual relationship, we can all benefit from shared experiences and wisdom in our daily lives.

I was once part of a 12-step program called Families Anonymous where I learned the mantra “keep coming back, it works if you work it.” I also remember the saying “everything worth having is worth working for”. These two mottos apply to so much in my life, but especially to my relationship with my husband.

As the symptoms of this disease progress, it can become more difficult to see the people you both were when you first fell in love. My husband and I have aged and with that we have more normal aches and pains. PD has also brought stiffness, awkward movements, and mobility issues into the picture. It is difficult to keep smiles on our faces when everything seems to be working against us.

We have found that we can give in to the negativity and be miserable together or we can do our best to overcome the challenges. We know that exercising together can alleviate much of the achiness and loosen stiff joints so we walk at least a mile everyday. We also take time for a morning cuddle which helps us start our day on a positive note. We are no longer spontaneous with our lovemaking but we do still plan for special times, date nights if you would. Some days we find we are just sitting together quietly holding hands or looking at old photos.

This disease has brought us many things but not all of them have to be unpleasant. Yes, it is impacting our roles as husband and wife, but it will not take away the love we share. I will always remember that caring is the most important component I, as a loving partner, bring to this role and treasure all the moments we have.

Your partner may not recognize all the changes taking place in their bodies due to Parkinson’s Disease. We expected stiffness, tremors and mobility challenges, we did not expect a perpetually runny nose. Rhinorrea, the technical term, is three times more common in people with PD than it is in the general public. Nor did we realize that the dry scalp and skin patches he has fought for years could be connected to his diagnosis of PD. This is a more common symptom and can show as either dry or oily patches according to the Parkinson’s Foundation.

I find that I need to be my husband’s “eyes” as things progress with this illness. He is quick to dismiss things that are happening or make excuses like “I’m sure it’s just allergies” or “I’ve always had a dry scalp”. It is true that these things may seem like they have been there forever, but it also may mean that he had PD at a much earlier age with limited symptomology. Unfortunately, we may never know for sure, and also unfortunately, traditional PD meds don’t help with many of these unusual symptoms. The good news is that there are treatments available that will work, once the problem has been identified.

In our case, my husband’s primary care physician has prescribed an antihistamine that controls his runny nose. He also sees a dermatologist annually and has a prescription for the dry skin patches. He uses a dandruff control shampoo to help with his dry scalp.

For more information on less common symptoms visit 10 Lesser Known Parkinson’s Disease Symptoms on the Michael J. Fox Foundation website or Is it Related to PD?, a presentation on the Parkinson’s Foundation website.  

Caring for someone else can be a full-time task and it is easy to let it take over your life. I find that I sometimes get engrossed in making sure my husband’s needs are met and forget that I have needs too. When I let this happen, I feel that I am no longer being a true CarePartner but am instead his caregiver. Not to minimize the role a caregiver can play, in our case it can mean providing a service that is less without my genuine presence and loving touch. I can’t totally be here for him without taking care of me first.

We woke late this morning and are running behind for an appointment. Yet, instead of rushing around and getting ready, I made a choice to care for myself first. I am sitting at my computer because this is what helps me maintain my positive mindset. I will take shortcuts on other aspects of self-care, maybe a quicker shower or less time dressing, but writing is like breathing for me and I won’t neglect myself by letting it go.

I found a great resource on-line called Self Care- What does it look like? on a website entitled CarePartner’s Resources, I think you’ll enjoy it too. 

Thanks for joining me here, this is my 100th blog and I hope you find it of interest and it gives you some things to think about in your journey.

Since my husband was diagnosed with PD, it is easy for me to assume that he can’t do things that we used to do together and that often puts me in a downward spiral. I find myself choosing not to involve my husband in activities simply because it may take longer. Everyday chores seem more difficult and I wonder why I have to do it all myself. Needless to say, my cranky side starts to come out.

When I choose to leave him out, I am unfairly limiting my husband’s potential, I am adding unnecessary stress to our lives, and I am putting more of a burden on me. I am not truly connecting to life, I am just surviving. My husband deserves better and, honestly, so do I.

If I am aware enough to recognize what is happening, I can stop and take a breath. Reaching out to my husband is often the first step to rebooting my attitude. If I take a moment to physically move myself out of the space I am in, I can often see where things are going haywire. Then I can look at what is not working, figure out what we can do to make it work, and begin again. PD likes to put up roadblocks on our journey, we will keep finding detours to make it through.

A treat for me can be something as simple as a trip to the store without my partner. It may be a stolen moment with a special chocolate or making my own favorite dish for dinner. I sometimes go outside to “check the garden” just to get a fresh breath and have a minute of my own.

As the disease progresses and my husband’s needs grow, it is becoming almost essential to build these treats into my schedule. There are the big ones, the monthly meetings with my PD partner’s support group and our exercise programs. Those connections help give me strength to continue the daily struggles, and remind me that others are on this journey with me, I am not alone. That is a treat in itself.

What I really need sometimes is an opportunity to escape the PD world entirely. So, in addition to my PD supports, I work to maintain a group of friends who know me for other reasons. We stay in touch and try to do lunch every couple of months. We laugh, we share food, and we don’t talk about PD, it is a wonderful break from the everyday challenges.

When I get together with my fellow CarePartners, we often talk about how difficult it is to be positive when you are physically and emotionally spent. Yet I still find myself tackling chores even when I know that I am tired and need to rest. There is always a reason to ‘take care of just one more thing” even when my body is telling me it is done. This is especially true when I have been busy all day with outside tasks only to find that I have neglected something essential like making dinner.

Beyond understanding my limits, another challenge seems to be pacing my day. Earlier this week, we had completed all our normal tasks only to realize at dinnertime that I had forgotten to cut the lawns. Knowing it is normally only a 45-minute job, I chose to take care of it when I finished in the kitchen. By the time the lawns were cut and then watered, I was tired, achy and cranky, and the rest of the evening was not pleasant. When we went to bed, I was overtired and had a very difficult night which impacted my abilities the next day.

My husband likes to remind me that I am not superwoman and don’t need to do it all. I have decided that I am going to start tracking home chores on our calendar so that I can make sure not to overschedule. I am going to learn to listen to my body because the signals are there, I just need to pay attention to them when they tell me to stop. An exhausted CarePartner is worse than no CarePartner at all. I will do what I can to respect my personal limits so that I can provide a positive life for myself and the one I love.