How do you experience rest and peace after a Parkinson’s diagnosis?

“I didn’t know what hit me. I went to the family doctor for a blue palm and later stood outside with two referral letters. One for the cardiologist but also one for the geriatrician. I ended up in the merry-go-round of all kinds of examinations with the diagnosis being Parkinson’s.” The lives of Stieneke and Martien are turned upside down. Yet they experience rest and peace. How?

Parkinson’s is not something you have alone

“Funnily enough, the diagnosis didn’t overwhelm us. When we had to fill in the long questionnaires, we recognized so much. It was also a confirmation of what we had already seen ourselves such as difficulty walking and in memory. But yes, after the diagnosis we did think…what now?”

“Parkinson’s you don’t have alone, you have it together,” says Martien. “Stieneke may be the one who is sick, but it happens to both of us. Also my life has already changed. When I went back to the office for the first time after the lockdown, I found it quite exciting. Wouldn’t she get the door up again or start ironing anyway? I also have a tracker on my phone now so I can always see where she is. But she can also see where I am,” they both laugh. 

Caregiver

“I am extremely happy to have such a good caregiver. Martien is very organized. I used to be that too, but I’m not that good at it anymore. He keeps track of everything. All appointments, arrangements and makes notes of everything to read back later. Now we sometimes suddenly find ourselves behind the pots and pans together, when I get stuck in the middle of cooking. We also talk a lot about it together.” And so Martien says: “We keep each other on our toes. We are grateful for the good days but sometimes I also have to remind her not to think as if nothing is wrong. Because she is sick and that will never go away.”

Uncertain future

“Our future is very uncertain. Because with Parkinson’s it can go either way. The course of the disease is very personal. No two patients are alike. We get a lot of information from the Parkinson Network, but I also have to be honest and say that I don’t go back to reading it in the evening because all that information doesn’t make you happy. I try not to focus too much on the deterioration but to look at what I can still do. And what I can do now to influence the course. For example, I am now practicing a lot to learn to walk properly. 

But if I don’t practice well now, there’s a good chance that I won’t be able to do it any more. I really have to think about each step.”

“I’m grateful for all the help and resources out there. But it’s also really hard sometimes.” Martien says: “I’m going to retire in a few years. Well that’s going to look a lot different than we thought.” And then Stieneke shares: “It didn’t occur to me until recently: will I be able to see my grandchildren grow up?

Rest and peace

“In the kitchen there are all the memo sheets of things I must not forget. Turn off the induction plate, turn off the iron. But also “pray for rest and peace”. And this is what we pray for every day. I wouldn’t know what to do in this situation if I didn’t have God. I would go crazy.”

“Angry at God we have not been. It is what it is. We can’t change it. I also don’t wonder why this happened to me/us. Why shouldn’t it happen to us? I certainly believe that God is good but that doesn’t automatically mean that we won’t experience difficult things in our lives. You can’t say, God is good so I will never get sick. We live in a broken world and what I love about it is to discover that God is right there.” 

Focus on God

“Lately I have been waking up very early. Sometimes as early as 5:00 am. Instead of being frustrated about that, I actually use that time as private time with God. I listen to the reflections from A Miracle Every Day or follow a reading plan on YouVersion. It helps me keep the focus on God early in the morning.”

“During one of the surveys, I had to do 6 assignments in 10 minutes. Something with language, math and storytelling. One was about the vacations. Piece of cake I thought, I’ve been traveling around so much. And I had to talk about what is important in my life. So I talked about my relationship with God. And you know what was so special? With that vacation story I scored below average, while my story with God scored above average. The doctor then explained that memories with emotions make a lot more connections in your brain. Your brain retains that much better. God is stored well in the memory.” 

Faith tested

“I used to be curious. What will it be like when my faith is tested,” says Stieneke. “When life suddenly doesn’t go so easily and you have to deal with setbacks and disappointments. I find it extraordinary that there seems to be peace and tranquility. We are actually surprised that we deal with it in this way, but above all grateful. That is why I like the song The Goodness of God so much. Despite the illness, we especially experience the goodness of God in our lives.”

Praying for healing?

“I found a very beautiful moment when our hairdresser came to our home to give us a haircut. She asked if we would mind if she prayed for healing. She didn’t know that just the night before I had told Martien that I had noticed that no one had offered this yet. It was a touching moment.”

“Yet we don’t focus on healing,” Martien explains. “People who think we should claim healing, we cut them off right away. We believe 100% that God can heal and we do pray for that. But who are we that we can claim or deserve healing? For me, the greatest miracle is precisely that we experience rest and peace in time. A Bible passage that inspires me in this comes from the book of Philippians, chapter 4, verses 6 and 7.

“Do not worry about anything, but pray for everything and ask God for what you need, grateful for everything He does. Then you will experience the peace of God, a peace that is beyond our human understanding and that keeps watch over your heart and mind, because you are in Christ Jesus.”

For Stieneke, the song “I Will Be There” is very special. “The title actually says it all, it’s a reminder that God is always there for you. That’s how I experience it too: God is with me. The moment I told my colleagues that I had Parkinson’s I also played this song. Just before that I was very restless. Yet I wanted to tell it this way. I want to show that in whatever situation of your life you are in, that you may experience rest and peace from God.”

The lyrics

How wonderful, Lord, is Your beautiful name;

The King of creation, all heaven proclaims

a mystery so deep and a treasure so rare.

Your name is ‘I am’ and ‘I will be there.’

A rainbow that shines for the promise you give

of love always faithful as long as I live,

through joy and through sorrow, through laughter and tears,

my rock and my refuge, through all the years.

My hope for the future is certain, I know.

You stand by me Jesus; You never let go.

When heaven awaits me I kneel at Your throne.

You welcome me Jesus, You take me home.

‘I am who I am’ is Your glorious name,

eternal and faithful, forever the same,

the Alpha, Omega, beyond all compare.

Your name is ‘I am’ and ‘I will be there.’

Oh name of all names, Lord, to You be the praise,

our God, everlasting, the ancient of days.

No pow’r on this earth or in heaven above

can set me apart from Your endless love.

Struggles

“If you are reading this and struggling with illness or disappointments in your life yourself I challenge you to just ask God for peace. Just try it. Let God surprise you.” 

Are you experiencing rest and peace in your life or just a lot of turmoil? Or do you have any questions? Share your story! Mail to martien@jesus.net or send a message to our e-coaches here.

Stieneke (62) and Martien van den Helder (65) have been married for 35 years and have two sons and 6 grandchildren. And number 7 is on the way. Together they live with great pleasure in Veenendaal. Martien is coordinator aftercare and training at Jesus.net. Stieneke works as a domestic help and as a volunteer at the Food Bank and day activities for the elderly.

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