The drugs treating Parkinson's

Readers Digest
April 16, 2016

Helen Cowan

There is no therapy more potent than levodopa for the symptoms of Parkinson’s, even four decades after Dr Cotzias first showed its ability to ‘awaken’ Parkinson’s patients. But is this about to change?

The Levodopa Story: Zombies and frozen addicts

A still from the film adaptation of Oliver Sacks's Awakenings

Levodopa is converted into dopamine in the body: an essential brain chemical that is deficient in Parkinson’s.

Long before the ‘elixir of life’ dopamine was first discovered, a strange sleeping sickness swept the world from 1916 to 1927. Many of those who survived were ‘as insubstantial as ghosts, and as passive as zombies’, sitting motionless and speechless all day in their chairs.

Administration of levodopa restored dopamine levels, ‘awakening’ the patients, as beautifully portrayed in the book of the same name by neurologist Oliver Sacks.

Meanwhile, a group of young drug addicts in California suddenly developed an exceptionally severe form of Parkinson’s in 1982 after taking a contaminated form of heroin which destroyed their dopamine-producing brain cells.

These unfortunate events have proved the importance of dopamine in controlling movement.

Restoring dopamine – add it, mimic it, boost it or ‘regrow’ it

Dopamine can be added to the brain by swallowing levodopa, often in combination with a second drug that prevents it being converted into dopamine until it reaches the brain. This reduces side effects and means that lower doses can be prescribed. Common combination drugs include Sinemet and Madopar.

Drugs that mimic dopamine include pramipexole and ropinirole. Unlike levodopa, their action is relatively constant: levodopa can have a troublesome ‘on-off effect’, where the patient suddenly stops whilst walking and is rooted to the spot, probably due to fluctuating blood levels of the drug.

Drugs that mimic dopamine have, however, been linked to excessive sleepiness, hallucinations and even compulsive behaviours such as gambling.

Dopamine levels can be boosted by drugs that prevent its natural breakdown in the brain. One such recently-introduced drug is Xadago. According to Professor Olanow from the Mount Sinai School of Medicine, “Xadago is the first drug to be approved for the treatment of Parkinson’s disease in the past 10 years.”

It has been tested on more than 3000 patients in 30 countries and is welcomed in the EU, but is yet to convince the US market.

Regrowing dopamine neurons sounds like something out of science fiction, but experiments into stem cell transplants and gene therapy keep the dream alive. Meanwhile, Dr Alan Whone and his team at Frenchay hospital are looking into injecting a drug called GDNF into the brain of Parkinson’s patients to trigger growth of brain cells.

Beyond dopamine – surprises in store?

Love them or hate them, statins provoke mixed reactions in the media. Used to prevent heart attacks, a ground-breaking new study is testing whether statins can stop dopamine nerve cells from dying.

Investigator Dr Mary Akinola from Oxford states; “This is an exciting prospect because all current drugs only reduce the symptoms of Parkinson’s: statins may actually slow or halt the progression of the disease”.

Other common drugs such as ibuprofen, levetiracetam (an antiepileptic), metformin (a diabetes drug), minocycline (an acne drug) and coenzyme Q10 (a food supplement) also show promise in Parkinson’s therapy. There is hope on the horizon.

http://www.readersdigest.co.uk/health/health-centre/drugs-treating-parkinsons?

James Levine to retire as Metropolitan Opera's music director due to Parkinson's disease

April 15, 2016

Boston Symphony Orchestra music director James Levine, right, conducting the symphony on its opening night performance at Tanglewood in Lenox., Mass. The Metropolitan Opera said, Thursday, April 14, 2016, that Levine will retire as music director at season's end. Photo Credit: AP

James Levine will retire as the Metropolitan Opera's music director at the end of this season because of Parkinson's disease, ending a 40-year run that lifted the company to a golden era but became increasingly problematic as his health declined.

Met general manager Peter Gelb said Thursday that Levine, who turns 73 in June, will become music director emeritus and a successor as music director will be appointed in "a couple months." While Levine intends to conduct in future seasons and will remain head of the company's young artist development program, the Met said his health has made it difficult for him to retain a full schedule.

"It had to be done. Jim recognizes that he needs to move on to a new chapter in his career," Gelb said during an interview. "The tragedy for him is that his musical mind and ideas are as great as ever. Physically he's not able to relay the information because of his Parkinson's."

Levine made his Met debut in June 1971 in Puccini's "Tosca" and eight months later was hired as principal conductor starting with the 1973-74 season. In May 1975, the company said he would become music director in 1976-77, and his title was upgraded to artistic director in 1986, a position he held until it reverted to music director in 2004, when he also became music director of the Boston Symphony Orchestra.

He has led 2,551 performances of more than 85 operas with the Met, by far the most by a conductor in the company's history. His tenure with a single orchestra is a rarity in a business where frequent podium shifts are commonplace. He instituted regular symphonic concerts with the orchestra in 1991 and a chamber ensemble in 1998.

 Bryan Cranston in "All the Way," a new Broadway production surrounding President Lyndon B. Johnson, after an assassin’s bullet catapults him into the presidency. (Credit: Evgenia Eliseeva)

"I am tremendously proud of all we have been able to achieve together as a company, from expanding the repertory to include new and seldom-heard works, to the development of the orchestra and chorus into one of the glories of the musical world," Levine said in a statement. "Although I am unable to spend as much time on the podium as I would like, I am pleased to step into my new role and maintain my profound artistic ties to the Met."

The favorites to succeed Levine appear to be Yannick Nezet-Seguin, a 41-year-old Canadian who is music director of the Philadelphia Orchestra, and Gianandrea Noseda, a 51-year Italian who is music director of the Teatro Regio in Turin. Because conductors are booked years in advance, Gelb said "there cannot be a seamless transition."

Levine led upward of 110 performances in a season in the 1980s, including tours. His successor likely would not conduct one-third that total.

"That was a superhuman effort that has never been attempted or equaled," Gelb said. "There's no conductor who's going to give that kind of time commitment to any organization."

While Levine upgraded the quality of the orchestra to the highest level since the company began in 1883, his health has been an issue for more than a decade and his baton and cues became harder to follow this season.

Levine has conducted from a chair since late 2001, and when tremors in his left arm and leg became noticeable in 2004, he said they began a decade earlier. His health worsened in 2006, when he tripped and fell on the stage of Boston's Symphony Hall during ovations that followed a performance and he tore a rotator cuff, which required shoulder surgery.

He had an operation in 2008 to remove a kidney and another in 2009 to repair a herniated disk in his back. He then suffered spinal stenosis, leading to surgeries in May and July 2011. He had another operation that September after falling and damaging a vertebra, an injury that sidelined him until May 2013. He relinquished his BSO position in 2011.

Gelb said the Met came close to announcing Levine's retirement earlier this winter but held off, waiting to see if a change in medication would improve Levine's health. While there was improvement, Gelb said there was not enough.

Levine is scheduled to conduct his remaining Met performances this season of Verdi's "Simon Boccanegra" and "Die Entfuehrung aus dem Serail (The Abduction from the Seraglio)." He is withdrawing from next year's new staging of Strauss' "Der Rosenkavalier" but remains slated for revivals of Rossini's "L'Italiana in Algeri (The Italian Girl in Algiers)," Verdi's "Nabucco" and Mozart's "Idomeneo."

Levine will be scheduled in the future one season ahead of performances. He hopes to conduct for many years.

"If it was up to him," Gelb said, "he would die on the podium."

http://www.newsday.com/entertainment/theater/james-levine-to-retire-as-metropolitan-opera-s-music-director-due-to-parkinson-s-disease-1.11695895

'I was 37 and married with two kids when Parkinson's struck but now I've climbed Mount Kilimanjaro'

 15 APR 2016, BY GRACE MACASKILL

Steve Moss was diagnosed with Parkinson's in the prime of his life but he has refused to let the debilitating illness end his life

Dad with Parkinson's, Steve Moss, climbs Kilimanjaro

Diagnosed with Parkinson’s in his prime, dad-of-two Steve Moss, 42, vowed to grab life with both hands.

Here he tells his story:

AS I stood breathlessly on the summit of Mount Kilimanjaro, the sense of elation was incredible.

Climbing the 5,895m peak had been a dream of mine. I could hardly believe I’d fulfilled it.

But the moment was also bittersweet, for the mountain I’d scaled was much more than a physical one...

Two years earlier, like most men of 37, I’d thought I was invincible - married with two kids, seemingly fit and health, with a passion for running and hill walking.

But I noticed that my right arm seemed to be dragging against my side when I ran.

Dad with Parkinson's vowed not to be beaten by illness

I was exhausted too, but put that down to having small children and a busy job as a chartered engineer.

Eventually, I went to my GP. Within 24 hours, a specialist made the life-changing diagnosis of early-onset Parkinson’s . 

It was a shock, although looking back, early signs were there, like a hand tremor whenever I was tired.

I didn’t know a lot about this degenerative neurological condition or what to expect.

I was told there was no cure, that symptoms progressed differently for everyone and experts had no idea why certain people develop the disease.

But I knew I couldn’t dwell on the fear that a cure wouldn’t come and my family would be forced to care for me.

Instead my wife Hannah and I decided to be pragmatic, taking steps such as moving into a bungalow.

Read more: Cure for Parkinson's in sight

I also vowed to embrace life - and my seven day mission to scale Kilimanjaro in 2013, before the chance was lost, was part of that.

It was a good thing, because since my trip, my symptoms have got considerably worse.

I have to take Levodopa, an artificial form of dopamine - the chemical lacking in the brain of sufferers - to control my hand and leg tremors.

Without it, I struggle with my balance, have very noticeable tremors and tend to limp.

It can lead to some strange looks in the street from people who think you’ve had too much to drink.

I’m also easily fatigued and describe myself as a “crap rechargable battery”, need to charge up frequently.

To start I tried to hide my Parkinson’s from colleagues. For the first 18 months, I’d quite literally sit on my hands to stop the tremor.

I worried about how I’d be perceived, if people would consider me incapable over doing my job.

But over time people started to suspect and I had to come clean, doing so just before my Kilimanjaro trip , adopting the mantra ‘accept-adjust-adapt’. 

Sharing the truth was like a weight lifting.

Dad with Parkinson's, Steve Moss, climbs Kilimanjaro

One way I’ve come to terms with my situation sharing my thoughts and feelings on Twitter, initially anonymously, under the ironic name @steadyhandsteve.

It’s been hugely cathartic.

I also started a blog and recently wrote an emotional letter to my ‘just diagnosed’ self.

It said: ‘I’m pleased to tell you that four years from now you live with Parkinson’s like many other suburban families with both parents juggling work; providing taxi services to the kids activities; time with friends; family time; nights out; fun; laughter.’

It also describes how part of my strength comes from a quotation Hannah found in a magazine, shortly after diagnosis, which reads: “Life isn’t about waiting for the storm to pass, it’s about learning to dance in the rain.”

I’m determined to carry on dancing - and running, doing an annual 10k and even a marathon in my hometown of Nottingham.

And climbing mountains too. But like Kilimanjaro, I’m going to tackle them head on.

http://www.mirror.co.uk/news/real-life-stories/i-37-married-two-kids-7765129?

Don't judge: It's Parkinson's

April 15, 2016

Pam Tritz-Okia

Sometimes at the end of the day, Pam Tritz-Okia sits down in a chair and doesn't get up for an hour.

Her two teenage sons and husband know to go on with their evening, preparing dinner and leaving her alone.

For Tritz-Okia, it's not your normal type of tired.

It's Parkinson's disease.

"I get home, I sit down, and sometimes I'll sit there and I don't know if I have the energy to walk to the bathroom. And I don't have the energy to turn on the TV. I literally just sit," Tritz-Okia said.Since her diagnosis in 2009, she and her husband have learned to plan more carefully and her boys have developed a stronger sense of empathy.

To share these experiences and to learn more, Tritz-Okia joined a St. Cloud support group for people with the neurodegenerative disorder and their caregivers.

The group has more than tripled since she started facilitating it a few years ago. At nearly 160 members, usually 40-50 show up at a monthly meeting at St. Cloud Public Library, but all are linked via the email.

The newly diagnosed often don't know what to expect, other than what they've seen from famous cases — Michael J. Fox, Muhammad Ali Janet Reno and others.Parkinson's can be difficult to diagnose because every case is unique. For instance, Tritz-Okia's was originally thought to be carpal tunnel because of an extreme pain in her right hand.

A speaker outlines some facts about Parkinson's disease during a Parkinson's support group meeting Monday, March 21, at St. Cloud Public Library. (Photo: Dave Schwarz, dschwarz@stcloudtimes.com)

The progression is slow in most people, and many live for years with the disease, according to the National Parkinson's Foundation.

With Parkinson's, a person's brain slowly stops producing dopamine, a neurotransmitter. With less dopamine, a person has less ability to regulate movements and emotions.

The disease itself is not fatal, but complications can arise. There is no cure, but doctors can treat symptoms to try and maintain quality of life.

Most experts believe it is caused by a combination of genetic and environmental factors. About 10-15 percent of cases are thought to be genetic. The average age of diagnosis is 62, and about 2 percent of the 1 million people with Parkinson's are thought to be below the age of 40.

Parkinson's is more common in whites and in men and has a higher incidence in the Midwest and northeastern U.S.

Many chemicals have been associated with the disease, and the chemicals are among those used in welding, farming, military activities and industrial processes. Some risk factors include: insecticides, fungicides, herbicides, head injuries and Agent Orange, which was used in the Vietnam War.

The disease covers a wide range of symptoms that go beyond a tremor, from those that don't interfere with daily life to those that require around-the-clock care.People with Parkinson's can have sensory mishits, where something tastes or smells like something it's not.

For instance, Tritz-Okia often smells smoke in the middle of the night.

"I get up and I start checking every room. ... You know it's not real, but it's such a strong smell you have to check," Tritz-Okia said.

For St. Cloud resident Marlyn Anderson's husband Charlie, his most significant symptoms are stooping and stiffness.

Diagnosed in 2015, the stoop even affects Charlie's vision. His bifocals don't work the way they're meant to when he's stooped over. His condition is complicated by Type 2 diabetes.

Treatments include various medications, surgical procedures such as deep brain stimulation, as well as lifestyle remedies, such as exercise and nutrition.

Because you're dealing with the brain, medication affects everyone differently, so patients and doctors will tinker with dosage, frequency and timing of medications to find what works well.

"You become extremely aware of your body," Tritz-Okia said.  Sometimes, the caregiver becomes extremely aware of the the person they're caring for.

People perform exercises during a Parkinson's support group meeting Monday, March 21, at St. Cloud Public Library. (Photo: Dave Schwarz, dschwarz@stcloudtimes.com)

Exercise also helps. Research shows people with Parkinson's who exercise a minimum of two and a half hours a week slowed the decline in quality of life.

In the support group, they learn about adaptive martial arts and Nordic walking, a form of fitness walking that uses specially designed walking poles. Tritz-Okia has a 30-minute sequence of stretches she does before she even gets out of bed.

Pete Froehle of St. Cloud used to bike and cross-country ski but hasn't been able to as his balance has worsened. Through the support group, he was introduced to Nordic walking.

"Doing that is a way for me to walk and not worry about my balance too much," he said. He uses poles to steady himself.

It lets him get out of the house. "That's where life should be done, is outside," he said.

Ruth and Arlen Johnson took the surgical route. Ruth was diagnosed in 1988, when she was in her mid-40s. As her symptoms progressed, medication wasn't helping and her quality of life was really poor. So she and Arlen explored deep brain stimulation, getting the surgery in 2004.

"As soon as the surgeon turned the battery on, she was a different person," Arlen said.

It worked so well the couple was even able to give away her motorized wheelchair. More than 10 years later, she can still walk.

The group offers an opportunity to compare notes, brainstorm and problem solve. They discuss ways to make the world friendlier for people with Parkinson's and others with disabilities.

Simple changes like sink and door handles that don't require a twisting motion, adding ramps and handrails, removing rugs and installing motion lights can all help. Even electric toothbrushes and smartphones are useful.

The group invites professionals to speak, on understanding the diagnosis, treatments, ways to make life easier, acupuncture, physical therapy, exercises, finances and more.

Another mission of the group is to raise awareness. When a Parkinson's person is in public, their symptoms can be misinterpreted for intoxication. You'll sometimes hear: "I'm not drunk. It's Parkinson's!"

The slogan catches people's attention and gives a pretty good visual of what Parkinson's may look like, if people aren't familiar. Characteristics like slurred words, balance, masked face and blurry eyes, tearing eyes, shaking or not walking smoothly, are common to both.

Care for caregivers is important too. It's hard to watch your loved one's health decline and it's exhausting, physically and emotionally. When Tritz-Okia saw her sons having to care for her, she had mixed feelings.

"I had this misunderstanding that I was always supposed to take care of them. That blossomed into the idea that we're a family and we take care of each other," Tritz-Okia said.

Marlyn Anderson says as a caregiver she's learned to be more patient. It may be faster and easier to go grocery shopping alone, but going to the store may be her husband's only chance to get out that day.

"I have to change my thinking and accept that that is a good thing for him," she said.

Sometimes, they'll divide up the support group between Parkinson's people and caregivers.

The group helps each deal with the complex emotions involved.

What's most important in dealing with the diagnosis?

Patience, being honest with yourself and working with the cards you're dealt, Tritz-Okia said.

There is some mourning that goes along with the initial diagnosis, Tritz-Okia said.

"I would call it an extreme depression," she said, "Did I got through it? You bet."

She had to quit a job that required public speaking because her tremors were too distracting to audiences.

"It just made me realize I was walking into a new chapter of my life," Tritz-Okia said.

She's not alone.

"A lot of people live in denial, which is the worst thing you can do," caregiver Arlen said.

That was true for Mary Kay Wagner of St. Cloud,  diagnosed in 1997. She joined the support group a few years ago.

"I didn't want to admit that I had the disease for a long time. I didn't tell anybody. I just didn't want to be one of those people," Wagner said.

Though her condition has taken away her job and activities like golfing and dance, she's found other ways to stay active. Now she swims at the YMCA and has found other activities, such as watercolor painting and scrapbooking.

Along the way, Wagner found a letter a woman wrote for her husband with Parkinson's, explaining the condition to those who are unfamiliar.

"Patience, my friend," it reads. "I need you. I'm the same person. I've just slowed down."

To recognize Parkinson's Awareness Month in April, the St. Cloud Parkinson's disease support group is inviting the public to an event.

When:1-3 p.m. Monday. 

Where: Independent Lifestyles in Sauk Rapids.

What: The event includes demonstrations of adapted martial arts and Nordic walking, information about Parkinson's and members' "two cents" on Parkinson's.

10 early warning signs of Parkinson's Disease

Tremor or shaking: Can be in fingers, thumbs, hands, chin, lips, legs

Small handwriting: Writing has gotten much smaller than in the past. 

Loss of smell: Unable to smell certain foods. 

Trouble sleeping: Thrashing around in bed or sudden movements during the night disrupt sleep. 

Trouble walking or moving: Stiffness in the body, arms or legs.

Constipation: Straining to move your bowels, on a daily basis. 

Low voice: Speaking softly, or a significant change in your voice.

Masked face: Face doesn't register emotion, or often looks serious or mad. Blank stare or not blinking eyes often is also a sign. 

Dizziness or fainting: Dizzy when standing up, which can be linked to low blood pressure. 

Stooping or hunching over: Not standing as straight as you used to, leaning or slouching. 

*Note: These symptoms obviously may indicate other health problems. 

For more details, visit parkinson.org/understanding-parkinsons/10-early-warning-signs.

Source: National Parkinson Foundation. 

By the numbers

As many as 1 million Americans live with Parkinson's. That's more than the combined number of people diagnosed with multiple sclerosis, muscular dystrophy and Lou Gehrig's disease (ALS). 

Complications from Parkinson's are the 14th leading cause of death in the U.S., according to the Centers for Disease Control and Prevention.

About 60,000 Americans are diagnosed yearly, but many cases go undetected. 

About 10 million people worldwide live with Parkinson's. 

Men are one and a half times more like to have Parkinson's than women. 

The combined direct and indirect cost of Parkinsons, including treatment, Social Security payments and lost income, is estimated to be nearly $25 million in the U.S. 

Medication costs for one person can average $2,500 a year, and surgery can cost up to $100,000 per patient. 

Source: Parkinson's Disease Foundation. 

Resources

St. Cloud Parkinson's disease support group: Meets the third Monday of the month from 1-2:30 p.m. at St. Cloud Public Library. For more information, contact Pam Tritz-Okia at 763-350-0368 or pamt@independentlifestyles.org. 
National Parkinson Foundation Minnesota: www.parinsonmn.org.            
National Parkinson Foundation: parkinson.org.            
Parkinson's Disease Foundation: www.pdf.org.

http://www.sctimes.com/story/news/local/2016/04/15/dont-judge-s-parkinsons/81940046/