I am signed up to get newsletters from many of the PD programs doing research and get updates about new medications on a fairly regular basis. Recently, a new medication was approved for use during off periods that would give a quick and short-term blast of dopamine to help smooth things until the regular dosage takes effect. This treatment was developed in part due to requests from CarePartners. We shared stories of our partners who were having such a tough time between doses and researchers listened. This is just one more way we can be support our partners by being involved in research that can make a difference for us today.

I like to read about possible new treatments, it helps keep my hopes up. So many people are working every day either for ways to figure out what causes this illness, to make life better, or to find a cure. It is encouraging to know that people care and that positive things are happening. Even the smallest of discoveries may lead to something bigger and by staying informed I feel part of the team that will one day figure this out and win the war against PD.

Click these links to check out the organizations I follow: Michael J. Fox Foundation, the Parkinson’s Foundation, the Davis Phinney Foundation, Parkinson’s Resources of Oregon and SW Washington, and the Pacific NW Parkinson’s Foundation.

As my husband will tell you, patience has never been my strongest virtue, waiting for anything is a challenge for me. So, of course, one of the dominant symptoms of his diagnosis with PD has been stiffness and rigidity which slows down everything we try to do. I get to practice my patience with this disease on a daily, no make that an hourly basis, and I often come up lacking.

Why is it that I remember my failures and frustration so much more clearly than my successes? I can tell you that I was short with my husband at least twice yesterday, for things outside of his control. Even when I don’t say the words, I know my body language can be unkind. What I don’t recall as well are the times when I smiled at him, hugged him and gave us the time needed to finish the task. I don’t remember when I waited patiently or planned extra space into our daily routine, knowing that it would be needed.

I have often said that I was put on this earth to learn patience. As we move forward in our journey with Parkinson’s, I believe that I am especially supposed to learn to be patient with myself. I need to remember that, just as my husband struggles with this diagnosis, I struggle with the role of CarePartner. It is different for each of us but can be equally challenging. I am always attempting to do my best, and that is all I can possibly do. While I may not always be the perfect Caregiver, I can still strive to be the perfect loving Partner for my husband and remember to give myself credit for doing that well.

I cannot take credit for today’s blog and apologize in advance to anyone who might be offended, but sometimes we just have to laugh or we would cry. I googled Parkinson’s jokes and came across these lovely comments, that have been modified slightly to meet a CarePartner perspective. I hope they bring you a smile…

We were getting really bored with our normal day to day life so my husband developed Parkinson’s Disease to shake things up. He tells me that it was tough to detect the tremors at first because he grew up in California and was used to everything always shaking. He is now part of a club for people with Parkinson’s, they have their own secret handshake. What instructions are not needed on his Parkinson’s medicine? Shake well before use.

My husband did share a hilarious joke about Parkinson’s last night, but I don’t want to tell it because he was a little shaky on the details. You know the best thing about my husband having Parkinson’s? I never have to buy him another electric toothbrush. He is thankful that he was diagnosed with PD instead of Alzheimer’s because, as he puts it, it’s better to spill only half your drink than to forget where the bottles are kept.

A friend asked me the other day if I had any advice for dealing with my husband’s diagnosis of Parkinson’s, apparently “just shake it off” wasn’t the right answer. So instead I offer this, may you always keep a smile on your face and love in your heart as you share in this challenging and difficult PD journey.

For these and many more fun PD jokes visit https://upjoke.com/parkinson-jokes.

Whoever said that the small stuff doesn’t matter wasn’t a CarePartner. Sometimes it is the littlest of things that make the biggest of differences in my day. A smile when I wasn’t looking for it, an unexpected message from a friend, the look in my partner’s eyes. A morning when things are going well and he doesn’t need my help getting dressed, it all matters.

Walking alongside someone with a chronic illness can be depressing as we tend to see only the challenges as their disease progresses. In our case, his tremors are more pronounced today or he seems stiffer and is moving more slowly. CarePartners are always on the lookout for the next issue so we can smooth it over and make life better. What if we looked for what’s going right instead of what’s going wrong? What if, instead of worrying about increased tremors, I celebrated those times when he appears to be shaking less? What if I acknowledge that his routine is going well this morning and mention that he seems to be having a good day? How would that change our daily journeys, would it lighten the load for both of us?

My husband knows that I will always be there for him when he needs me, what about when he doesn’t? I need to remember that we are in this relationship for good and bad and learn to acknowledge when it is good. If I can consciously make note of those times when all is going well, I think that it will remind us both that they still outweigh the others and help us recognize all the small victories in this battle with PD.

This is definitely not how I expected life to be when we both retired. We were going to travel and I was going to have time to explore new interests. I was going to write a novel and finally get it published. Life was going to be easy and fun. Then, my husband developed a tremor that shook our entire world.

And so, our plans have changed. Not quite the travels we anticipated, we get to go back and forth to visit his neurologist and other specialists regularly. Instead of writing that novel, I am writing a blog about caring for someone with a chronic illness. The new interests we have developed all focus on PD and finding ways to make life better whether it is through boxing or support groups. And all that extra time I was going to have? I spend it doing work around our home, chores that he once was able to do, or helping my husband with his daily living activities.

Yes, I do miss the carefree man that I married and yes, I do wish he had never been diagnosed with this illness. There is a sadness deep inside, a piece of me that grieves the life we might have had and wonders where it might have taken us. I miss his easy smiles and quick wit. Yet, I know that he is still here with me. So, on those days when I am feeling particularly nostalgic for what might have been, I take a look beyond the PD at what we do still have and find the love. We are still here, we are still moving, and we will keep on fighting this disease together. As I grieve for what might have been, I will rejoice for what we still have and look forward with an open heart to new opportunities we will share in the future.

For more on dealing with your feelings of grief check out this article entitled “Grief and Loss” on the Family Caregiver Alliance website.

There are many ways to help others, one of the easiest is attending a support group, whether virtual or in person. While most people normally join to find support for their own needs, the group also provides a common understating that we are not in this alone. I know that when I attended my first PD group, it was the many smiling faces around the table that brought a sense of belonging to my soul. The guest speakers were just icing on the cake.

Another way to help others is to participate in research as a member of a study group. Many programs are for People with Parkinson’s only, but the Michael J. Fox Foundation has a program called “Fox Insight” and they need people without the disease as well. I have been actively participating in this project for several years now and I hope that I may be making a small difference for someone else down the line.

Finally, reach out and be a friend to someone else. Listen to their story and share some of yours. You never know what struggles they might be facing nor the impact you can have until you open your heart and give it a chance. Our journey as CarePartners can be lonely if the only person we interact with is our Partners, find someone new to share it with today.

For more information on research programs visit “Your Role in Research”  on the Michael J. Fox website or “Patient Engagement” through the Parkinson’s Foundation.

I think we all have those times when the challenges seem overwhelming and we wonder if we can go on. It is especially tough when I think about what might be coming. If I can’t make it through today, how will I ever make it tomorrow?

Those are the times when I remind myself to simply step back, take a breath, and look for the good things that are still all around me. I look at the blue sky or the green trees. I look at the home we have created together or pictures of our families. I look at my loving husband and realize that no matter how difficult things can be, I am thankful to have him in my life.

Then, if I can determine the thing that is causing me the most distress, I can usually find a way to tackle it differently. Addressing the challenge with a new perspective should allow me to move forward. One small victory can reset my overwhelmed outlook from one of negativity to a more positive can-do attitude. And, I will have one more thing to be grateful for as we move together in this daily journey with PD.

The longer I live the more I realize just how little I actually can control in my life. If I had control, my husband would not be fighting Parkinson’s Disease and we would not be living in a world where the smallest of viruses can bring our society to its knees. Life would be simpler and the world would be a friendly and open place for everyone to live.

Unfortunately, I am not the ultimate Goddess of the Universe with control over everything and everyone in creation. I am just me, a CarePartner who strives to do her best every day as she cares for her loving partner with PD. Which brings me little control in my life but does give me a sense of fulfillment when I do it right.

So, what do I have control over? I can control some of the schedules around our lives, making sure that I provide a supportive environment for my husband as he struggles with his illness. I can accept my lack of control when things get too crazy or overwhelming and take a step back so I don’t make it worse. Most importantly, I have control over my actions and reactions to our daily challenges which allows me to choose to face them with a positive attitude. The winds will blow, and I can withstand anything that comes, as long as I keep a positive outlook and seek the joy wherever this journey takes us. 

Caring for a loved one can wear you out and may eventually wear you down. It is important that you always keep an eye on how you are feeling and try not to do too much. Having said that, I am probably the queen of tackling things I shouldn’t and taking on more than I can handle. Gutter cleaning, power-washing and chopping firewood are just a few examples of times I probably should have said not me.  

On those days when I finally do admit that a break is needed, I talk with my husband and let him know that I am tired and that I am going to do try to catch up on some rest. We did this yesterday, sat on the couch and watched movies all afternoon, and it was good for both of us. We laughed and cried with the movies and were able to escape our lives with PD for a while. I slept well last night and feel better today and ready to take on all my regular challenges.

After a day of R&R, my body and soul are refreshed and, even though the tasks are still there waiting, I can tackle them with renewed energy and motivation. I can also take a moment and look at them with clearer eyes as I decide whether I need to do them or if I need to ask for help and then move on. A rested CarePartner makes wiser choices in this lifelong journey of ours.

Stress comes at us in so many different ways and we are so busy trying to be patient with our partners that we don’t always see it happening. In this moment, I am very stressed about something I saw on the internet. I recognize where the stress is coming from but am not sure how to redirect it and make it positive. I think the first step is to walk away from the source, but then how do I let go of the stressful thoughts and move forward?

When I am faced with something that stresses me out, I try to find the source, take a couple of deep breathes and begin the process of letting it go. One technique I learned a long time ago is to ask myself if this will matter in 5 years? More often than not, the answer is that I won’t even remember it in 5 years making it easier to laugh and let it go. When that doesn’t work, I try to physically move myself into doing something more positive. I know that when my body is involved in a positive activity, my brain will eventually follow. This may be something as simple as making myself and my partner a cup of tea. Anything that will derail me from the original train of thought so I can begin again in a more positive direction.

Being a CarePartner is an interesting journey without adding unnecessary stress. I am learning to avoid things that can be triggers for drama and search out the things that sooth my soul. I am a fan of yoga, cozy mysteries and light jazz music. I like scented candles and warm fires. There will always be stressful times in my life and if I can continue to be conscientious about providing time for soothing activities, I will be ready when it strikes.