“Just because we always have” or “because it’s a family tradition” are horrible excuses for continuing activities when everyone comes simply because they feel obligated to participate. If you are still doing things that you did 10 or even just 5 years ago, why are you doing them? Do they bring you joy or are they just a lot of work for nothing? These are questions that I had to face over the past couple of years and the answers have been surprising.

I started by thinking carefully about the things I was inflicting on myself and my husband in the name of celebrating holidays and family milestones. While it is nice to get everyone together, could we do it in a simpler or less stressful way so as to not exhaust ourselves? Does it need to be a family dinner at our house or can we just get together in a nice restaurant for lunch? If I really feel that the family dinner is essential to stay connected, can someone else be the host? Most importantly, do my husband and I have the energy to do this? Maybe the time has come to pass on some of the duties and to let go of some of the others that no longer have meaning.

Traditions are wonderful and well worth preserving when they bring value to family relationships. I have realized that they can also make for wonderful memories when participating in them is no longer a reasonable expectation for us. In this world of Parkinson’s, we are working to live more meaningfully each and every day. Let us also work to find new ways to celebrate so we can all enjoy those special times in our lives.

My husband is diagnosed with a chronic and progressive disease, things are changing and not for the better which is something I have had to accept. Sometimes we see the changes coming and other times they come on so slowly that we don’t realize they have happened. I suddenly find myself doing more for him and wonder why.

One change we have had to face involves social interactions with other people. My husband is an intelligent man and a great listener, which was something that drew me to him in the first place. He has always been able to hold down a conversation and has a sharp wit. As his illness takes its course, he is more likely to withdraw from speaking when we are out with friends and instead turns to me to respond for him. He still has so much to offer but the physical process of speech has slowed so that by the time he forms the words and gets them out, the group is off on another thought. It has become much easier for him to sit and observe than to be an active participant. We have found that conversations work much better if we limit ourselves to smaller groups that take the time to welcome all voices. We also go out with our friends in the PD community as often as possible because they are much more understanding and many share in his struggles.

There are times when I worry about what additional changes will come and what challenges we will face. I know that the only thing that slows the progression is exercise and so we box, we move, we sing and talk and even yell at times. We will keep on fighting back because it is the only thing we know to do and we will keep on growing as each new challenge comes our way.

This is so true. Too often I accept defeat before I even give things a chance. There is so much value in attempting new challenges as I always learn something regardless of the outcome.

I think one of the biggest challenges I have faced since my husband’s diagnosis is that he no longer drives. If we want to go somewhere, it is up to me to get us there. I am finding out that I am a much more capable driver than I thought and that we can go anywhere we went when my husband was behind the wheel. So far we have found our way home even when we get lost. It has been a growth experience for me.

Even more important though is how I “try” to help my husband as he is impacted by this chronic illness. The role of CarePartner is difficult at best and can sometimes feel devastating. Simple daily tasks have become challenging as he struggles with a body that doesn’t cooperate any more. I struggle with knowing when to step in and help and when to step back and let him do it on his own. “Try” for me can often mean doing nothing as I work to figure out how best to support him.  Success for us is almost always defined in different terms, for me it may be patience and for him perseverance or persistence.

We are both learning new ways to interact as we move forward together. We are learning to laugh when things are tough and to respect each other as we find our limits. There will be trials and errors, there will be successes and failures, but most importantly, there will always be love. We can make it through this together no matter what the challenges as long as we never give up and stop trying.

The instructor of my husband’s movement class is someone I’ve come to think of as a good friend and she tells us that simply smiling, whether it is real or not, will change your personal demeanor. The muscular contractions you make with your face fool your brain into thinking you are happy. I have tried it when I am having a difficult day and it really does work. She also teaches that laughter, fake or real, can help lift your spirits, another concept that I have tried and found to be true. If we can change our individual reality with such simple actions, can sharing concerns and positive feelings about others through thought, meditation or prayer help bring about a change?

It does sound rather unrealistic, yet even taking the time to consider positives changes I would like to see for other members of my community changes my perspective. If I can look at challenges other people are facing with compassion and caring, it also helps me look differently at the challenges I have in my day. I don’t need to compare our situations or lessen anything they are going through, simply think of them with hope and love. I know from experience that when I take the time to create and send positive thoughts out to someone, it can bring about positive feelings within me.

Making conscious choices to wrap my friends in positive thoughts does change the way I interact with them and positively impacts the way I move through my days. If I am presenting the universe with a positive face, how can the universe respond back any differently?

We have a corgi named Yogi. He was a rescue dog, but I am going to paraphrase something I saw on a bumpersticker the other day “I’m not sure who rescued who”. He joined us on our Parkinson’s journey about 8 years ago and it has been a very good thing for both of us. While having a pet creates an additional burden, the benefits that come alongside owning a dog definitely outweigh the challenges.

It is great having Yogi and feeling the unconditional love and devotion that he brings. He is always happy to see me and will accept whatever I have to give. He can be a bit demanding at times but he is not judgmental, and always understands that what I often need most is just a hug.

Yogi gives my husband and I both a reason to get up every morning and then later takes us out of the house for his daily walk. He also knows the importance of taking naps and loves sharing the cuddle bench with us at the end of the day. He is a great listener and is full of kisses when things are not going well, or anytime really, his licking is limitless. There is the fact that he is just so darn cute that all he has to do is be here and it puts a smile on my face and lightens my load.

Sometimes I wish I could have his life, so carefree with the only worry when his next meal or walk is. While he does appear to have some emotions, they are limited and short term unlike the intense and complex life I share with my husband. So, on those days when I want to give it all up and have a dog’s life, I need to look at all the wonderful people who surround me and be thankful that I can love and appreciate them fully, PD and all. Then, I need to grab the leash and take a walk with my best four-legged friend ever.

And then, even more importantly, let me remember the choice I make as I move through the day. It is so easy to wake in the morning and say that I am going to be loving and kind, the true challenge comes in later when things aren’t going quite the way I expected and I find myself feeling frustrated or upset. That is when things go haywire and when I really need to remember this choice so I can respond calmly to all situations and with kindness in my heart, not anger.

I once had a job where I had to make collection calls to people. These were difficult and often uncomfortable conversations with people who really didn’t want to be talking to me. I put signs up around my desk reminding me to “breathe” and “smile”. Surrounding my workspace with those positive messages helped me remain calm and find ways to communicate more easily to resolve issues.

What signs would help me through the day as a CarePartner? I do have a copy of the Caregiver Ten Commandments hanging over my desk that was put together by a group called Elder Care at Home. It reminds me that I don’t need to be perfect or feel bad when I need to take time for myself. The sign I don’t have but need to see regularly is “it’s the illness, not the person” to remind me to direct my feelings of anger and frustration at PD and not my husband. Other sayings that I need to add are “don’t try to do it all” and “remember what matters most” to remind me to prioritize my tasks and my day to provide the best care for both of us.

Our home is filled with symbols of our love and those are the things that direct my actions throughout the day. There are pictures of family and past travels, photos from our wedding and silly gifts we have given each other. I am constantly reminded of the love we share and the message is clear- I need to make the choice to be calm, patient, and kind because he would be if I were the one with the disease. I will be conscious of the choices I make with my words and actions, and do my best to always make them with positive motivation and love.

Find your own copy of Caregiver Ten Commandments at www.ElderCareatHome.org.

I know that sometimes I am too independent. I am great at offering and helping others, yet I don’t reciprocate. I really don’t like to ask anyone for help with tasks I feel I should be doing. Perhaps it’s because I was raised in a can-do family who did everything on their own. My Dad was the king of duct tape and crazy glue, I think I inherited that same attitude. One thing that my husband is still trying to teach me is that just because you can do something doesn’t mean you should.

There are times in our lives when we all need a little help. My first option has always been my husband, but his symptoms of PD are starting to get in the way. As we walk this journey together, I don’t want to make him feel any less because he can’t do the things he has always done. Neither do I want to be the one who is too tired all the time because I am trying to do the work of both of us.

It feels great when someone asks me to help them; I love the feeling of satisfaction when we are done. Knowing that they trust me and feel I have something to offer boosts my ego and builds my emotional sense of wealth. I need to remember that I can give these positive feelings to others simply by allowing them opportunities to help me with jobs that are difficult or too complicated to complete alone.  The decisions I am making are not just about me anymore, they impact my husband too. I am going to learn to prioritize tasks so that I can ask for and accept the help we need so that we can both stay healthy and happy.

Sometimes it is important to get back to the basics of life and remember how lucky I am just to be here. I lost a friend last week who was younger than me, things happen. I have several friends who have lost their partners to diseases or accidents. Life is short and precious; we need to live it fully.

I can’t always know where each day is going to take us so I need to remember that no matter what type of mood I wake up in, I can choose to be thankful for the things that are good in my life and find positive ways to move forward.

When I wake up “on the wrong side of the bed”, I will turn over and look at the amazing person who shares it with me. I will think about our lives and how wonderful it is just to be walking beside him no matter what challenges we face. I will remember that he has always been there for me through my difficult times and I will be thankful that I have the opportunity to be there for him. I will find happiness in the knowledge that we have one more day to share in this journey together.  

I wonder if trying to keep a positive attitude is too much to ask when facing PD but it is the only way I know to get through. I found another interesting perspective in an article entitled “Don’t Worry, Be Happy: Parkinson’s and the Limits of Positive Thinking”.

I am in this journey because 20 years ago I fell in love with an amazing man. That loving relationship included a spontaneous and fulfilling physical component. If I let that go, I am cheating myself, and my partner, out of some the wonders that our togetherness has to offer.

When thinking about the physical relationship we share, it is important that we take the time to explore options that age and PD provide. There are changes but they are not all with him nor are they all PD related. It is important to remember that I am getting older and that my body and needs are changing too. It may be that we need to slow things down and take our time or that we need a little assistance to get things going at all. Maybe spontaneous intercourse isn’t possible, can we still find other ways to fulfill our needs and find mutual satisfaction? Sometimes a naked cuddle can bring as much pleasure as a wild night together used to bring. We work to find ways to connect and let our love hold us together.

As the disease progresses and we both age, the challenges will get greater. I spoke with a woman recently who talked about how they have adapted their cuddles to be more comfortable for her husband. She spoons from behind and it gives them the opportunity to be close without pain. When my parents reached the point that Dad was in a wheelchair, they used to put his chair next to the couch so they could hold hands while watching television. Sometimes just touching each other is enough to maintain an intimate connection.

There are many great articles on sexual health with PD and I particularly liked this page on the Michael J. Fox website entitled Sexual and Reproductive Health.

This journey with PD has been so difficult because there is so little that we can control, especially as the carepartner. I am a control freak, freely admitted, and it has always been a joke in our relationship. My husband gets it and puts up with it, unfortunately Parkinson’s Disease doesn’t.

Neither of us can control when he has good days or bad days. I can’t speed him up or make his movements easier. I can’t take away the aches and pains associated with stiff joints. I can’t stop the tremors. All I can do is recognize the uselessness of my attempts to control it all and let it go. And, remember not to complain to him because he is not able to control it either.

This is a lesson that I am still trying to learn so that I don’t become frustrated with him when my real adversary is the illness itself. I need to remember that in this shared journey, there will be battles I can fight and others that I need to step away from. I need to do my best to always maintain a positive outlook especially when things are difficult for us. As I learned a long time ago, I must learn to control my own reactions to the challenges we face and let go of all the rest. I can be a supportive and loving partner in this journey as long as I remember that we walk side by side and I am not leading the way.