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A Tale of a Beating Heart and the Will to Move Forward

heart

With Parkinson’s disease, a progressive nervous system disorder that affects movement, some days you need a little nudge to keep going. Other days require a huge push.

I recently watched a video that told the story of a pastor who asks his friend, a heart surgeon, if he can observe one of his heart surgeries. According to Randy Philips of the musical group Philips, Craig & Dean, the physician makes the arrangements. The pastor watches as the patient’s chest is cut open, the damaged heart is repaired, and is returned to the chest cavity.

The heart is massaged, and doctors wait for it to begin working. But nothing happens. The heart refuses to beat. So the heart surgeon massages the heart again. 

Still nothing.

After a few more attempts to restart the heart, it still refuses to beat.

Finally, the heart surgeon does something unconventional. He removes his mask, kneels beside his patient, and speaks to her.

“Mrs. Johnson, this is your surgeon. The operation went perfectly. Your heart has been repaired. Now tell your heart to beat again.”

A few seconds and her heart begins beating. It needed a little “nudge.”

Just like the patient on the operating table, our hearts need a little nudge — sometimes a big push — to get going again after we receive a diagnosis of Parkinson’s disease (or any chronic illness, for that matter).

We want to get better, but our fortitude is failing and we slowly begin to give up. We don’t want to isolate ourselves from others, but we can feel so self-conscious when we are out in public dealing with tremors, dyskinesia, drooling, and choking. 

We want to get up, go out, and exercise, but our legs freeze on us before we even get to the front door. Eventually, we quit trying.

Sometimes life with Parkinson’s can be so hard.

Former “American Idol” contestant Danny Gokey was inspired by the story of the pastor and the heart surgeon to write his hit single, “Tell Your Heart to Beat Again.” The beginning of the song illustrates how we can feel broken and shattered, as if we will never get back to the life we once knew or the person we used to be. It’s about the person who is traveling on a new and unfamiliar journey.

We may have to tell our heart to beat again, like the doctor told his patient. It may be time to say goodbye to the past, look forward, and move in the new direction we have been given. It may not be the life you once knew or dreamed of, but we’ve been set on a new journey — and it might even be a better one.

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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 A Tale of a Beating Heart and the Will to Move Forward appeared first on Parkinson’s News Today.

Strategies to Combat Freezing in Parkinson’s Patients

Strategies to Combat Freezing

Freezing” is when an individual suddenly feels like they’re glued to the ground. Parkinson’s disease patients often experience freezing during the late stages of the disease. It can occur while the person is in motion or after they’ve been stationary and then attempt to move. It’s associated with complicated movements like dodging obstacles or getting up from a chair.

The loss of automatic motor skills affects one’s sense of control and even their safety, as about 38 percent of Parkinson’s patients fall each year. Tracking when your struggles occur can help you to manage them, allowing you to challenge how frequently freezing occurs.

What causes freezing?

Not everyone with Parkinson’s experiences freezing, and the exact cause of freezing is unknown. But our relationship to balance gives insight into potential causes. Parkinson’s patients experience changes in the brain that affect the way they walk.

Dr. Howard Weiss, in his blog for the Parkinson Foundation of the National Capital Area, writes, “’Freezing of gait’ is often triggered by specific activities or circumstances that demand switching between motor actions.” While learning to walk, we strengthen the neural pathways that allow us to balance. But Parkinson’s patients see a degradation of these pathways, leading to difficulty in stabilization.

What freezing is like for my dad

Like many Parkinson’s patients, my dad notices that he usually only freezes when he’s not on his medication. It usually happens while he’s moving through doors: “When you pivot you’re worried about losing your balance. That’s why we shuffle our feet and take baby steps initially. Once I’m moving I’m fine,” he says.

Since he’s worried about maintaining balance while navigating, it’s possible that there’s a connection between fear and freezing. Continuous motion seems to bypass the risk of freezing, while shifting motion types can present challenges.

But curiously, stairs are rarely problematic: “I freeze just before I’m ready to go down the stairs. But when I’m actually walking downstairs I don’t have a problem. I can practically hop down them once I’m in motion. And going upstairs is fine,” he says. Getting started can prove challenging, but the act of walking up and down the stairs is still relatively easy.

So, what can you do to manage freezing?

  • If you find yourself getting stuck in particular places, try changing the layout of your living space. Freezing can occur because you have to pivot around furniture.
  • Exploring rhythm helps you to maintain momentum where you previously got stuck. Some Parkinson’s patients explore strategies like dancing, counting, marching, and shifting their weight from side to side.

Thinking outside of the box can assist you in unfreezing yourself. Dad finds that his posture can affect whether or not he’s able to unfreeze himself: “When I freeze, I stand up straight. If I move away from gravity, I can unfreeze. But if I’m hunching over, gravity pulls me toward the floor and it takes longer to get out of the freeze. And once I move my left foot forward, I can unfreeze. Freezing’s scary. That’s why a lot of Parkinson’s patients fall.”

Exercise and physical therapy can be game changers

Joining a Parkinson’s-specific fitness program like Rock Steady Boxing helps you to strengthen your motor functions. This ultimately allows you to stabilize with more ease. Since Parkinson’s patients often see a decline in motor skills, exercise can offer a good option for strengthening those skills. Rock Steady also uses portions of the class to teach Parkinson’s patients how to fall.

According to Dad, “About once a month or so, they’ll put mats on the floor and show you proper falling and rolling technique. They try to do things in boxing that’ll help people with different stages of Parkinson’s.”

While the exercise portion of Rock Steady Boxing is valuable in itself, learning how to fall helps mitigate risk as much as possible.

Freezing is a frightening phenomenon, but there are ways you can manage this symptom. Stay positive! Try to find Parkinson’s fitness classes or challenge yourself with rhythmic solutions to freezing. Other patients have found that these strategies can assist in the management of motor-related functions.

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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 Strategies to Combat Freezing in Parkinson’s Patients appeared first on Parkinson’s News Today.

A New Look at Freezing: ‘Scenario Looping Breakdowns’ As an Early Symptom

Reframing how we describe symptoms of Parkinson’s disease (PD) can help us understand the disease spectrum concept that I introduced last week. One such symptom is the movement disorder called “freezing.” I believe there is an early PD symptom variation of freezing, called “scenario looping breakdown.” Understanding it may help people realize what drives this symptom.
When I first heard the term freezing, I pictured a deer frozen in the headlights of a car. It wasn’t until I started experiencing subtle variations of inability to move a given muscle (it was frozen) that I understood freezing connected to something I lectured on when I worked with people who had neurological impairments. At that time, I called it, “scenario looping.”
Scenario looping is best described with a story: Imagine you’re at the grocery store to pick up dinner supplies. It’s early afternoon (no pressure) and while strolling aisles, your eyes wander about, checking people out. You see somebody vaguely familiar. The person turns to face you and your heart skips. It’s that gorgeous person you have a passionate crush on, walking to you with a big smile. Your face as red as the beets in the produce section, you smile and engage in pleasantries. The conversation turns to, “Well, what are you doing after you’re done shopping?” Every fiber in your body screams at you, “I want to spend intimate time with this person right now!” At the same time, you have in your hand a small shopping basket with spaghetti sauce, specialty meatballs, and gluten-free noodles. What do you do?
Arriving at the answer involves “looping” through the scenario over and over, weighing the consequences of any action until you arrive at a satisfactory answer of what to do. Scenarios of all types are presented to us every day. We constantly face decisions about how to use our time, how to structure our language, and even how to structure our internal dialogue. All of this connects to scenario looping.
Scenario looping also connects to motor sequencing. If you wanted to leave the spaghetti behind and immediately walk out with your old flame, then you would need to tell your body to do the necessary motor sequences. We may not think of motor sequences as part of how we interact with the day because so much of our movement, like walking, is nearly automatic.
The term “freezing” associated with PD commonly refers to freezing while walking. Walking is often automatic. We have done so much walking in our lives that it has become a motor sequence we don’t think of — an overlearned motor scenario loop. We don’t have to think about every step we take. We can run on autopilot. Think of autopilot as a small string of actions that almost automatically function in the background of your mind. If autopilot functions properly, you can simultaneously walk and have a conversation or listen to music. As the saying goes, “You can walk and chew gum at the same time.”
It is possible that scenario looping breakdowns are symptoms indicating PD’s

Source: Parkinson's News Today