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Muhammad Ali’s Life and Parkinson’s Legacy

Muhammad Ali

Dad has always loved films about fighters.

There’s an allure to watching an underdog rise to fame. Maybe he’s mesmerized by the strength of characters like Rambo and Muhammad Ali because he hopes there’s a fighter in him as well. He won’t define himself by his circumstances or sink into indifference. Instead, he steps into the boxing ring, lifts his hands, and swears to fight his best fight.

Dad has taken a particular interest in Muhammad Ali, who was one of history’s most accomplished boxers. His legacy persisted, even when he was diagnosed with early-onset Parkinson’s disease. Maybe my dad sees himself in Ali, believing himself to be a literal and figurative fighter. Just like Ali, he fights Parkinson’s every day.

Stepping into the ring

Ali wasn’t just a fighter. He was witty, charming, and entertaining — the stuff of legends. After he won a gold medal in the 1960 Olympic Games at the age of 18, he continued his rise to fame by becoming the only three-time heavyweight world champion. He adopted a regal attitude when met with challenges, and he won the heart of America.

In 1971, Ali fought Joe Frazier in history’s greatest boxing match. Both men were undefeated when they stepped into the ring. After 15 heart-wrenching rounds, Frazier was victorious, but in 1974 and 1975, the men faced each other again.

Ali was named victor both times.

In reference to his battle with Frazier, Ali said, “I once read something that said, ‘He who is not courageous enough to take risks will accomplish nothing in life.’ Well, boxing is a risk and life is a gamble, and I got to take both.”

Ali and Parkinson’s

In the late 1970s, the public observed changes in Ali’s speed and speech. However, he wasn’t actually diagnosed with Parkinson’s until 1984 at the age of 42. The news came just three years after he formally retired from boxing.

It’s generally speculated that Ali’s boxing career was linked to his development of Parkinson’s. Wins turned to losses as his speed and agility suffered. By the time he took one of the greatest beatings of his life at the age of 38, the neurological symptoms were glaring. His speech was slurred and his hands were trembling visibly.

Philanthropy and activism

Ali’s life as a philanthropist was as mesmerizing as the grace he exhibited in the boxing ring. He dedicated himself to volunteer work and hoped to positively impact people who struggled.

Eventually, America’s hero established the multicultural Muhammad Ali Center, which includes a museum dedicated to Ali’s life and legacy. He hoped it would inspire others to “be as great as they can be.” To this day, the center develops programs that cultivate six principles: confidence, conviction, dedication, giving, respect, and spirituality.

Ali passed away from Parkinson’s-related complications in 2016 at the age of 74, but his mission lives on.

Ali’s impact on Parkinson’s

Heroes like Ali paved the way to understanding Parkinson’s by sharing their own experiences. A 2017 study found that Parkinson’s substantially impacted Ali’s speech, even before he was formally diagnosed. By studying the changes that Ali observed before his diagnosis, medical professionals can better understand the early symptoms of Parkinson’s.

There’s cause for speculation regarding Ali’s relationship with boxing. Would he have been diagnosed with Parkinson’s at age 42 had he stepped out of the boxing ring earlier? Is there a relationship between neurological disease and head injuries? If so, what can we learn from Ali’s experience with Parkinson’s?

No matter the answers, it’s clear that Ali played a significant role in the public’s growing interest in Parkinson’s.

We’re still captivated

I can’t help but wonder why we’re still captivated by Ali.

Perhaps we’re mesmerized by Ali’s poise throughout his Parkinson’s journey. He was a symbol of hope, showing other Parkinson’s patients that they don’t have to limit themselves. He lived for the journey and was determined to test his own limitations. He was unwilling to back down when he lost a match.

Whatever the reason for our continuing fascination, Ali’s tale of regality and triumph inspires generation after generation.

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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 Muhammad Ali’s Life and Parkinson’s Legacy appeared first on Parkinson’s News Today.

‘Get It On Time’ Petition Seeks Better Access to Parkinson’s Meds in UK

petition

A healthcare petition called “Get It On Time” is circulating in the U.K. among people with Parkinson’s disease (PD). According to the petition, hospitalized PD patients are not getting the medications they need on time, if at all.

Over 700 patients in the U.K. were surveyed from May to July. Seventy-eight percent said their health suffered setbacks as a result of missed medications, including tremors, anxiety, decreased mobility, and communication issues. The Guardian health policy editor Denis Campbell noted that some Parkinson’s patients are unable to walk or talk because they don’t get their medications on time.

On Twitter, David Sangster, a Parkinson’s advocate in the U.K., described his hospital experience as a “caring environment, clean and professional. The visiting specialists nurses were … experts in every facet of PD, they were remarkable. … But #parkinsons was not understood on the ward and that’s wrong.”

Dawn Iola Chappell, another U.K. resident, responded to a tweet regarding the petition by saying, “[M]y Dad did not get his medication on time and it was the beginning of the end.”

It’s not just an issue in the UK

Before my deep brain stimulation surgery, my doctor told me to bring my medications to the hospital and administer them myself. The staff was unaware of the importance of distributing medications accurately or on time. Hospitals can be a frightening place, so it’s important that you take an active role in your healthcare, no matter how much you trust your medical team.

When medication schedules are not adhered to, a variety of problems can occur. The patient may begin to flail about. Tremors that were under control may worsen, or the patient may appear to be experiencing seizures. In response, hospital staff might treat the patient for seizures, resulting in dangerous and even fatal outcomes, which you can read about here.

What can you do now to prevent a mishap later? If possible, people with PD should have an advocate with them who knows the medication schedule and can help with administration should the need arise. One patient suggested the use of flashcards when a patient is coherent but unable to communicate verbally. For example, one of the flashcards could include: “Need PD meds now!”

If you’re a resident of the U.K., consider signing the petition. Every name helps!

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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 ‘Get It On Time’ Petition Seeks Better Access to Parkinson’s Meds in UK appeared first on Parkinson’s News Today.

Parkinson’s Makes Us Role Models

role model

Sherri Journeying Through

We didn’t stand in a long line, waiting our turn to collect the perfect life. Nor did we have a choice as to what kind of life we would be handed. We were just given a box, wrapped in paper with “Surprise” written on it. When we opened our “gift” — some of us at birth, some as toddlers, some as teenagers, some as young adults, some old, and some older — we were definitely surprised. 

While in our mother’s womb, we may have been making plans. Perhaps we planned to be the next Beethoven, Marie Curie, or Albert Einstein. Having our course set before us, we were ready to run as soon as we exited the birth canal. Then, eventually, we opened our gift. To say we were surprised by what was inside might be putting it lightly. For some, sideswiped might be a better word. Needless to say, when we saw Parkinson’s disease sitting inside, we wanted no part of it. 

“What do I do with this?” we quietly asked ourselves. Maybe we even asked our doctors. We couldn’t send it back. Once opened, it wouldn’t fit back into the box in which it came.

So, what do I do with this?!

This time we were crying out loud.

Parkinson’s wasn’t what we thought about in the confines of our mother’s belly. We thought about warm, fuzzy things like raising healthy families of our own. Maybe we would run marathons with a strong body. Maybe we would even do some medical research with a brilliant mind. We watched as some opened their gift at age 82, while others unwrapped it in our late 20s or 30s. We called it unfair.

After the initial shock wore off, we became more familiar with our “new” life. We began to see that we had a choice of how we would live with this gift. Returning it wasn’t an option because we didn’t know where it came from or how we got it. So, we had to find some way to live with it.

The rest of our lives could be spent commiserating our plight in life. We could exert precious energy complaining and expressing our discontent. Or, we could spend it being a role model for Parkinson’s. We could advocate for a cure, encourage others on their journey with this disease, and teach people about PD.

Being a role model for PD wasn’t in our plans, but unfortunately, we don’t have a choice.

This is the quandary we find ourselves in. We are a role model for PD, whether we like it or not. We can live well in this life we’ve been given or we can waste it feeling sorry for ourselves, whining to those who will listen. 

Without this gift we’ve been given, we may not have known the depth of compassion and understanding for others we’ve experienced. Our “people connections” would have been limited and most likely not have included our Parkinson’s network. Without storms in our lives, we could not appreciate the sunny, more carefree days. 

Which will you choose?

Will you choose to fight this gift by complaining and bellyaching, making others around you miserable in the process? Or will you fight the fight of living your best with Parkinson’s? We are a role model for PD. For good or bad.

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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 Parkinson’s Makes Us Role Models appeared first on Parkinson’s News Today.

Educating the Educated About Parkinson’s Disease

EDUCATING

Sherri Journeying Through

I went to the dermatologist yesterday for a skin check. Those of us who have Parkinson’s disease (PD) should make a habit of getting a yearly check because our condition increases the odds of getting skin cancer. The Mayo Clinic reported that patients with Parkinson’s “were roughly four times likelier to have had a history of melanoma than those without Parkinson’s, and people with melanoma had a fourfold higher risk of developing Parkinson’s. …”

So, I had an appointment with the dermatologist.

After a thorough body check and five biopsies, I was free to leave. The nurse stayed back with me after the doctor left because I struggled to move. She asked when I was diagnosed with Parkinson’s. After I answered “2004,” she replied, “Isn’t that young for Parkinson’s?” Not as young as when the symptoms began 10 years before that, I wanted to answer. 

She followed that question with another: “Did it run in my family?”

No.

“Not even one relative?”

No.

“Are you sure?”

Yes.

While I dressed and walked out to where my husband waited in the car, I shook terribly. That’s something I hadn’t done in quite a while. I was sure it was the combination of numbing five different areas with an intrusive needle and the anxious feeling that came over me with the news that spots could be cancerous. However, what caught me almost more off guard was the nurse’s questioning. 

I guess what surprised me is how uninformed so many still are.

I have spoken to groups about my 20-year journey with Parkinson’s disease. I write about it on my blog. I am open about it with others. I have written articles for several different publications. I am a PD advocate. I know a lot about the disease. I just figure others do, too. What surprised me most about her questions was that she worked for a dermatologist who should be very familiar with PD since the disease can highly affect the skin.

As patients, our job is far from finished.

As long as we live with PD, we are responsible for getting information about this disease out to everyone we can, as best we can. Not just to newbies in the patient club, but also those in the medical fields. Perhaps the patients and caregivers should hold a conference for medical professionals instead of the opposite. After all, we are living PD day to day, feeling it moment by moment. As my movement disability specialist once told me, “You patients are the experts. The doctors take their cue from you.”

If that is true then we need to be proactive with the hand we’re dealt. We must educate those around us, whether they’re a patient, nurse, caregiver, doctor, dental hygienist, or medical transporter. It’s going to take a whole lot more than answering the question of whether Parkinson’s disease is hereditary — it was obvious to me the nurse wasn’t buying my answers.

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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 Educating the Educated About Parkinson’s Disease appeared first on Parkinson’s News Today.