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Parkinson’s Disease and the Uninvited Guest

parenting

When Parkinson’s entered my life, it brought an uninvited guest along with it: Parkinson’s me.

Parkinson’s me follows me everywhere and is part of everything I do. Most of the time, she quietly stays in the background. Other times, she is overwhelming, to the point where putting on my brave face becomes exhausting. Until recently, I didn’t always like Parkinson’s me, but I’m trying to understand her instead of simply being afraid of her.

Parents with early onset Parkinson’s are in the busiest times of their lives. Any situation can become stressful and trigger symptoms. Despite my best efforts, Parkinson’s me tends to arrive front and center. It’s not uncommon for her to have a completely irrational response to things. Indeed, anxiety and Parkinson’s are good friends often seen together. Their relationship manifests as a nonmotor symptom that, when overlooked, can be debilitating, frustrating, and embarrassing.

I feel helpless when Parkinson’s affects my ability to parent my child. Parkinson’s me always seems to arrive when my kid needs me — at tryouts, auditions, school functions, and other crowded events. For example, Parkinson’s me accompanied my son to a crowded audition, complete with tremors and a feeling of panic. My son put his hands on my shoulders and said, “Mom, I’ve got this. You can go.”

I was embarrassed and felt horrible for leaving, but he was right to send Parkinson’s me on her way. Rather than being embarrassed by what I could not do as a parent, I should have been proud of my son’s confidence and his ability to handle this situation and many others.

If we’re open about Parkinson’s and willing to talk to them about our diagnosis, kids are incredibly perceptive and resilient. In my opinion, we should help them understand Parkinson’s so they are not afraid of it.

Ultimately, we are still their parents. We just happen to have Parkinson’s.

If you find yourself embarrassed by your disease as a parent, stop and ask yourself the following questions: Did you get the job done? Was your kid strong and confident? The answers will be “yes” because you are a parent. Your kid knows that you don’t quit.

You may stumble and fall, but you will always get up. They are confident that you will be there for them, which is a direct result of your efforts, despite the challenges that come with Parkinson’s.

It is not easy to admit, but Parkinson’s me actually can get the job done. The job is just done differently, and that’s OK.

***

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

The post Parkinson’s Disease and the Uninvited Guest appeared first on Parkinson’s News Today.

Finding the Little Surprises in Life

Sherri Journeying Through Parkinson's

My youngest grandson is 4. He loves to do whatever we’re doing, whether it’s cooking with Grandpa, changing the oil in his dad’s truck, or planting seeds in the garden with me, Grammy. 

When he comes into the house, he almost immediately climbs onto the bar stool, ready to “mix stuff.” He mixes up anything he can get his hands on: flour, sugar, salt, oil, milk, or eggs. When he goes home, a sign of the day’s activities usually is stashed somewhere in our house. For example, after he left today, I was getting something out of the cupboard and found his cooking tongs sitting on a shelf in the pantry.

I love finding little surprises like that. They are little surprises that remind me where he had been or what he was doing. It made me think of how God leaves little surprises — little reminders — of what He is doing in our lives. 

For those of us living with a chronic illness, sometimes it can be difficult to see anything good happening in our lives.

We can often dread each day instead of looking forward to it with anticipation. When our day consists of trying to stay upright and being clearly understood, or dealing with relentless pain, it’s hard to find nice surprises awaiting us.

Living with Parkinson’s disease, sometimes it’s hard to see reminders of where God is working in our lives because often it can feel as though He isn’t working — the way we want Him too, anyhow.

We want to be nicely surprised that our medications are lasting longer and are working better. We want to be surprised that the exercises we just started are making a noticeable difference and are proving to be beneficial. We want the nutritional changes we have made to make us feel better. We want a cure. We want to be surprised with a miracle of being healed. 

When we fail to see anything much changing for the better in our lives, we eventually stop looking for anything better.

We tend to lose hope. And then one day, we open a cupboard door and see a yellow bottle of pills on the shelf and realize we forgot to take the last dose, which in turn makes us realize we went longer than usual before needing the next dose.

A nice surprise.

Another day, we notice we are jumping farther than we have ever jumped before in exercise class, and that is another nice surprise. We notice that the pain we were fighting last week has eased up some, and that is another very nice surprise. And suddenly, where we were once starting to feel defeated, we again have hope. All because our day was sprinkled with unexpected surprises. Surprises that God hid in the little places of our lives, in order to remind us that He’s still working — and He’s full of surprises.

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

The post Finding the Little Surprises in Life appeared first on Parkinson’s News Today.

Accepting the Invitations You’re Afraid to Accept Can Be Worth It

Sherri Journeying Through

Several years ago, my youngest son discovered the camera, and through its lens, he discovered a whole new world.

On one particular day, I was feeling down and he asked why.

“I don’t know,” I replied. There was no real reason. Some days are just like that when you have Parkinson’s disease. It comes for free with the experience of having the disease.

“You wanna come with me to take pictures?” he asked. That was unusual, as he usually went alone to do his assignments for his photography class.

“No, I’ll stay here.” No one else was home and I wasn’t going to go with him and make him miserable.

“Are you sure?” Rarely did he ask someone to go. Even rarer was the second invitation. I was tempted but replied with the same answer.

“Come on. You’ll feel better,” he said with a slight grin and cocked his head in an attempt to cheer me up.

I smiled inside, my outside smile refusing to work. Thanks, Parkinson’s (sarcasm intended). “You go ahead. I’ll be fine,” I answered.

And so he went off to get a few things from his room and as he went out the front door, I went downstairs.

As I got to the bottom stair, I turned around and went back up as fast as I could. Yes, I did want to go. I did want to feel better. But most of all, I never wanted to regret turning down that rare invitation of spending time with my youngest son. I opened the door, hoping against hope that he was still there. The car was gone, but he was running up the driveway!

“Can I still come?” I asked.

“Yeah, I just forgot something.” I thanked God, put on my shoes, grabbed my camera and my coat, and got into the car.

That day, we took pictures of moss and birds, pictures in blues and greens, squawking geese and floating ducks. We saw thunderclouds, rusted cars, and nests hidden in the limbs of trees. We climbed over barbed wire fences and stepped in mud holes. We heard blaring guitars in the middle of nowhere and froze in the icy cold air of an Idaho winter. We chased a hawk as it teased us while soaring above in serpentine circles with the air currents over a meadow of frozen wheat stubble. And then, like the moss and the squawking geese and the iced stream, he spotted it.

With blues and grays, pinks and yellows dabbed with gold, there it was, the picture of the day. The sunset sang out to both of us at the same time. And as we both grabbed our cameras to capture the moment, we noticed the tree, framed before the sunset. It was a magnificent picture and moment. A glorious moment.

And I thanked God. I thanked Him for all things good and not so good. For moss on trees and squawking geese. For barbed wire fences and mud holes. For floating ducks and iced-over streams running through snow-covered meadows. For bird nests hidden in limbs of trees and little birds on bare treetops huddled together to keep warm. For the freezing cold and that silly, playful hawk. But most of all, I thanked God for my son and that he forgot something and ran back up the driveway.

“Come on,” he said, “You’ll feel better.” And he was right.

An invitation that wouldn’t quit. A glorious afternoon. Time spent with my son. Parkinson’s? Worth it.

***

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

The post Accepting the Invitations You’re Afraid to Accept Can Be Worth It appeared first on Parkinson’s News Today.

Source: Parkinson's News Today

Sometimes Grace Hurts

faith

Sherri Journeying Through

Steven Curtis Chapman said it best:


”I don’t even wanna breathe right now
…I don’t even wanna be right now
I don’t wanna think another thought
…I don’t wanna feel this pain I feel 
[but] right now, pain is all I’ve got.”

It was a hard day.

I waved goodbye to my son, his wife, and my two grandchildren as they drove down the street. They were heading north to a new home, new jobs, a new life. Twelve hours away instead of 12 minutes. My two grandchildren — one 5, the other 1 — I had watched almost every day. All day.

I helped those little ones learn to walk. Eat with a spoon. Drink from a cup. I sat in that rocking chair over there and rocked them to sleep. Sang them songs. I read to them the story about the pants with nobody inside of them, by Dr. Seuss. I held them when they were sick or well or when they just wanted to be held. We jumped in puddles, planted flowers, played games, went for walks.

I sat at that table over there and played games with “Boo.” We colored, we painted, we had tea parties. Then my son announced a new job opportunity and you can guess the rest. That’s why I stood outside on that summer morning, waving goodbye to a car filled with oh-so-precious ones.

I went to the rose garden later, and everywhere I walked, I heard Boo. I saw her chasing blackbirds. I heard her excitement upon finally seeing the elusive jackrabbit we’ve been tracking for months.

The next day, I worked in the garden and watered her row: larkspur, bachelor buttons, poppies. She was so proud of her little garden. I worked out there all day. I worked until I couldn’t move. I worked so I didn’t have to think. I watered the ground with tears.

The following day, I still couldn’t move because I moved too much the day before. I had lost mobility and gained pain. I sat on the couch and worked on pictures and cried. My grandchildrens’ smiles fill my digital albums; I could almost hear the giggles behind those smiles.

The next day, I felt like I was locked in a blackened room — hopeless, lost, empty — weeping for lost things. And it felt like my heart was breaking in two. The crack in my heart a week before was now a massive crevice. The strength that held me together became jello.

God, how am I going to do this? I whispered through tears I hadn’t spilled out so hard in so long.

My head told me those two little ones were not mine to hold onto. I was not even their parent. Can a grammy love her little grandchildren so much? Yes. She most definitely can.

I sat on the bathroom floor. I cried more and through the tears, whispered, God, I lived for those kids.

They were my daily dose of laughter, love, smiles, hugs, and joy. God used those little ones to bless me over and above in so many ways never deserved. I viewed them as little disciples, and we talked about God everywhere we went. In everything we did.

How I found the energy to do it every day, only God knows. I napped when they napped and again when they went home. I fought through the pain within my body and never refused to hold them or change diapers, even when I didn’t think I could stand the pain another minute. I was determined not to let Parkinson’s dictate my life, but my body was screaming to let go. My heart was screaming to hold on. My head was saying it was time. Time to listen to the body. The disease that strives to claim more ground with each passing day was doing its job. It was time to let go.

The grace of God intervened. Sometimes grace hurts. That still, small voice that you can hear because you’re not busy making incessant chatter. The comforting, life-giving voice of God.

God, I lived for those kids, I had whispered through tears. And before I could go on to the next thought of despair, He whispered back, “Live for me.

Uncontrollable sobbing became controlled. The tears dried up as a tiny ray of sunshine, a tiny grain of hope took hold deep inside my heart — the crevice began to close. A few more tears fell, not from grief but because of grace. The grace of God. The trustworthy grace of a merciful God.

I don’t know what living for Him looks like in the days ahead as I live this life with Parkinson’s disease, but as I live for Him, I will trust Him completely. I’ve been through too much in my lifetime to do anything less.

As I said, Steven Curtis Chapman says it best: “Even when I don’t understand, even then I will say …
 You are my God, and I will trust You.”

Through losses, heartaches, pain, diseases, we can trust Him.

***

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

The post Sometimes Grace Hurts appeared first on Parkinson’s News Today.

Source: Parkinson's News Today

Caregivers: We Wouldn’t Make It Without You

caregivers, dance

Sherri Journeying Through

Sitting in the neurologist’s office, my questions usually get answered, my fears often get calmed, my symptoms often are addressed. However, I sometimes wonder how my husband feels sitting there, listening in, adding his two cents worth. How does he feel about what he sees happening to me daily, what he might be missing, how he is coping, or going to cope?

Who asks questions of the caregiver? Where do they go to for support? Is there someone who can put their fears to rest? What should they (the caregiver) expect?

Because I’ve never seen an article address the subject much (although, I’m sure they’re out there), I thought I’d try. Since I am not the caregiver in my situation, I have researched some material to find some answers.

So, caregivers: What could be ahead on this journey with Parkinson’s for you?

You are in for some changes. Your loved one is going to be changing physically, emotionally, and mentally day by day. Because each case differs in how Parkinson’s disease or any chronic illness affects the patient, it is hard to say how much change will occur or how long it might take or last. This could very well cause fear, and understandably so.

You fear your spouse will no longer be that beauty or that hunk you once fell in love with and were attracted to. You no longer have those deep conversations you used to have. Their concentration level just isn’t there, and it’s frustrating you can no longer have talks like you used to under the stars. The cognitive issues that so often accompany Parkinson’s disease can be harder to handle than the physical changes. And so often, it may seem that the disease now outshines the person you once knew.

It’s OK to grieve because what you are experiencing is worth grieving over. Someone doesn’t have to have died to be dealing with grief. I grieved for years over my oldest son moving his family away in hopes of finding a better job so he could provide more for them. No one died, but the grief was (is) real. Your loved one may not be anywhere close to passing, but still, you grieve over the one you are slowly losing to a malicious disease.

When the disease is diagnosed, it can be confusing. A lot of misinformation can be floating around in cyberspace. It is best to get your information from a qualified source and to remember that each person wears PD differently. You may very well face family members and friends who don’t want to believe what is happening, and they will offer no help or support whatsoever. You may feel left alone to fight this battle. You may fear being alone to finish your life, a life that now looks so different from the one you and your loved one had dreamed of.

You may realize that the support just isn’t there. The support you expected or anticipated. Family and friends may stop calling or stopping by. They may not invite you to get-togethers as they once did. They may ignore you.

They just don’t understand. They can’t understand unless they walk the same path, or a very similar one.

It can be a pretty dismal place. But remember: Everybody’s situation is different. Everybody will respond to this disease differently, both as patient and caregiver.

What I wish to convey in this column is this: We couldn’t make it without you. I am sure it’s only going to get harder. And hard is hardly the word to describe a caregiver’s situation as they care for someone with Parkinson’s disease. But you chose, and still choose, to stay through the long haul even though you could have left and gone your own way.

I know of people whose spouse left when they were diagnosed with Parkinson’s disease. But you haven’t. You have chosen to hold tight to the promise you made at the altar or as a loyal friend. And we love you for it. And because we love you, please get some support for yourself. Don’t go this journey alone. Move closer to family if they can’t come to you. You do (and will) need each other.

And we, the needy patient, may get to a point where we can’t say it or show it, but we are so grateful and blessed to have you in our life, and we love you for all that you are: our caregivers.

***

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

The post Caregivers: We Wouldn’t Make It Without You appeared first on Parkinson’s News Today.

Source: Parkinson's News Today

Grandparenting with Parkinson’s Disease

grandparenting

Sherri Journeying Through

You’ll soon be blessed with your first grandchild. The news brings joy to your ears and puts a spring in your step, until you begin to reevaluate: You have Parkinson’s disease. Will you prove to be of no use? Will you be a burden? A bother? Just in the way? Or somewhat of an asset? Can you be a help to your children on their new adventure — your grand, new adventure? What can you expect?

I became “Grammy” when my first grandchild, a beautiful little girl was born four years after my Parkinson’s disease diagnosis.

I was in a fairly good place physically. I was slower, but still capable of walking on my own and getting around. I was losing upper body strength, but I began watching my granddaughter every day when she was 6 months old. Babies are born small and grow into big people, not vice versa. So, while I watched my granddaughter grow, I noticed I was growing stronger in my upper body. My granddaughter had become my “home gym.”

I now have three grandchildren; the youngest is a 3-year-old whom I watch every day. On certain days, because of my health, my grandson and I take “our” activities at a slower pace. On other days, I need a little extra time. That’s one blessing of being around smaller children. Everything fascinates them. They stop to notice things instead of hurrying by with an eagerness to get to their destination at a record pace. And children bring joy into our lives that nothing else can compare to. They are good in uplifting our souls and our spirits.

My husband is unemployed, which has been a serious hardship on his desire to support his family financially. But often I look out the window and, with tears silently filling my eyes, I give a prayer of thanksgiving for what God has done. God knew my heart would yearn to watch my grandkids — all of them — if their parents needed to work. God also knew, that in my present condition with Parkinson’s disease, I wouldn’t be able to do it day in and day out, alone. He gave me my husband as my caregiver. He is an exceptional caregiver to me and helps tremendously in the care of his little grandson.

I needed to learn to make some changes, though, to be able to watch my grandkids. I have had to:

  • Let go of my pride.
  • Let others help me.
  • Recognize every single need has been filled month in and month out.
  • Let go of my perfectionist personality and let things wait until I have time to clean them or until I have the energy to do it.
  • Realize some things are no longer as important as they once were, like housework.

What might you, as a grandparent, be able to do with your grandchildren when you have PD? For those who are still able to get around independently, you know from having your own children that they love to go on walks and “explore.” Walking is one good exercise for grandparents with Parkinson’s disease. Play games as you walk. “I spy …,” pretending to fly, looking for ladybugs, and naming different flower types and their colors are all fun ways to spend a sunny day outside, and they are easy on grandma and grandpa. On rainy days, you’ll find us jumping in puddles. Make sure to keep a spare pair of rubber boots and a raincoat at your house. Thrift stores are good places to look for spare rain gear.

Check my column in a couple of days. I’ll share specific ways to have fun with your little ones without losing your mind or your strength!

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

The post Grandparenting with Parkinson’s Disease appeared first on Parkinson’s News Today.

Source: Parkinson's News Today