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Brian Grant Won’t Back Down From Parkinson’s Disease

by Chris Ballard

He could hear the roar from the back hallway of the Rose Garden, the clatter of 20,000 fans.

For years, Brian Grant had fed off that roar, back when Blazers fans wore T-shirts that read “Rasta Monsta” and embraced him as they had few others. Never the fastest, biggest or most skilled, Grant got by on hustle and desire. What was it Tim Duncan once said? “Hardest-working guy in the league. You’ve got to respect that cat.” And Grant took pride in that. On playing an entire season with a torn labrum. On never backing down, whether it was guarding Karl Malone or levering his 6’9″ frame into Shaquille O’Neal. On trying harder than anyone else. He got out of Georgetown, Ohio, by not trying; survived 12 years in the league by trying; tore up both knees by trying.

But now, standing in that concrete corridor on a November night in 2008, two years after his final NBA game, Grant felt only fear and anxiety. He was there to honor an old friend, former Blazer Kevin Duckworth, who’d died of heart failure at 44. All Grant needed to do was be present. Wave, bow his head, pay his respects. And yet he’d already sweated through his white undershirt, the perspiration breaching his blue button-down and threatening his navy blazer. He thought about ducking into the bathroom to towel off, maybe even bolting the arena. Read more at Sports Illustrated…

Source: Sports Illustrated

 

Pre-clinical research may slow effects of Parkinson’s

by: ABC 33/40

ABC 33/40′ spoke with two people who live with the disease about new findings from Purdue University researchers.

Published in the scientific journal Molecular and Cellular Neuroscience, the researchers say they have pinpointed an important compound in the development of Parkinson’s disease in the brain.

Their work could be significant because it may impact how we treat the disease in several ways: like better therapies, new drugs and earlier diagnoses or preventative care.

Two men gave reporter Patrick Thomas a glimpse into what new treatments in their lives could do.

Whether he stands or sits, with shaky hands and trembling feet, Parkinson’s is life for Wayne Cook for the last ten years. “The things that you, used to take for granted,” Cook says as he tries to raise his left hand to his chest but can’t hold it still. “The fine motor skills are difficult.”

The same goes for Ken Cater over the last nearly 13 years of his life. “But you know it’s tough. Right now I’m dealing with a progressive disease,” says Cater.

Which Purdue University researchers say when they located the compound called Acrolein, it may lead to discoveries that alleviate symptoms of Parkinson’s. Cook tries to explain how it affects his speech. “You get something here (points to his brain) and then you know what you want to say, but it just stops right here. It won’t come out all the way.”

Cater explains what he thinks most fighting the disease want right now. Cater says, “The Holy Grail that we are looking for right now is something that can slow or stop the progression of the disease.”

Right now the research includes work that has been tested in animal models and cells, not humans.

Cook says he is even willing to be a part of any research that may eventually include human testing. “I’m anxious for it to happen. If they have got a study and they need volunteers I raise my hand,” says Cook.

But through the research, scientists say they lessened and reversed effects of Parkinson’s using the drug Hydralazine

Since it’s still only pre-clinical research Cater says he will wait and see. “I’m hopeful for a cure in the near future if not at least better treatments,” he says.

If you have questions about living with Parkinson’s as a patient or caretaker, the Parkinson Association of Alabama may be able to help.

Source: Pre-clinical research may slow or reverse effects of Parkinson’s, patients weigh in

Parkinson’s Foundation Enrolls 10,000th Patient in Largest Clinical Trial of the Disease Ever

By Carolina Henriques

The Parkinson’s Foundation has enrolled the 10,000th patient in the largest clinical trial of the disease yet to be conducted.

Among the critical discoveries so far, the research has shown that regular visits to neurologists, more exercise, and more attention to mental health could help improve patients’ wellbeing.

The Parkinson’s Outcomes Project is evaluating a broad range of factors associated with the disease, including medications, treatments, movement symptoms, cognition, anxiety and depression, and the disorder’s burden on caregivers.

Launched in 2009, the project has become a comprehensive platform for studying the lives of Parkinson’s patients. And it has led to the formation of a consortium of 29 experts in five countries.

The study includes over 100 people who have lived with Parkinson’s for more than 30 years and 83 who learned about their diagnosis before they were 30 years old. Its records include 25,000 visits to doctors and information from almost 9,000 caregivers.

Key conclusions drawn from the study include:

Regular visits to neurologists should be a priority for patients and caregivers because it could save thousands of lives a year.

Recent research has listed regular visits to a neurologist as an important step in Parkinson’s management. However, in a 2011 study, only 58 percent of 138,000 Parkinson’s-related difficulties led to neurologist care. Race was a significant demographic predictor of neurologist treatment, with non-whites being less likely to receive care.

Doctors should give patients’ physical activity more attention because studies have shown that increasing exercise and movement to at least 2 1/2 hours a week can slow the decline in patients’ quality of life.

Researchers have found that, in Parkinson’s, it’s not the type of exercise a patient engages in, but the frequency of the workout that’s important. Physical therapists recommend exercises whose goals include improving balance and coordination, flexibility, endurance, and strength.

Patient’s mental health should be a priority because researchers have found that depression and anxiety are leading factors in patients’ overall health.

Depression is one of the most common non-movement symptoms of the disease, with up to 60 percent of patients affected at one time or another.

Finally, doctors should do a better job of addressing gender differences between patients. A key reason is that many men can rely on wives and other family members for daily support and doctor visits. Women are less likely to have family caregiver support and be more frequent users of formal, paid caregiver services.

This discovery is supported by recent findings that confirm these gender disparities, such as a study in Neurology in 2017.

“We have obtained a wealth of information in what now represents the broadest and most inclusive patient population ever assembled in a clinical study of Parkinson’s,” Peter Schmidt, the senior vice president of the Parkinson’s Foundation, said in a press release. He has been directing the study.

“This project is truly innovative in that it not only follows thousands of patients over time, but that it studies everyone with Parkinson’s, from the newly diagnosed to people who have lived with the disease for 30 years or more,” added Thomas Davis, the study’s co-chair.

Researchers have been using the Parkinson’s Foundation’s Centers of Excellence network of 42 medical centers to enroll patients in the study.

In addition, “we are studying the quality of Parkinson’s care delivered at our Centers of Excellence to help patients who aren’t being seen at one,” said Fernando Cubillos, who oversees the study’s operations. “Our goal is to help identify the best care and disseminate that information widely.”

The post Parkinson’s Foundation Enrolls 10,000th Patient in Largest Clinical Trial of the Disease Ever appeared first on Parkinson’s News Today.

Source:: Parkinson’s Today

First Drug Approved for Dyskinesia in Parkinson’s Disease

By Kristen Teesdale

Adamas Pharmaceuticals yesterday announced U.S. Food and Drug Administration (FDA) approval of an extended-release formulation of amantadine (GOCOVRI) to treat dyskinesia in Parkinson’s disease (PD). This is the first drug indicated specifically for dyskinesia — uncontrolled, involuntary movements that can develop with long-term levodopa use.

Extended-release amantadine is intended to be taken once daily at bedtime. In this way it can control dyskinesia during the day, when it typically is most prevalent. The new therapy’s approval is based on data from three placebo-controlled trials that demonstrated safety and efficacy. In addition to easing dyskinesia, the drug also may lessen total daily “off” time, when Parkinson’s symptoms return because medication is not working optimally.

The Michael J. Fox Foundation (MJFF) helped move this drug to market by supporting the creation and authentication of the Unified Dyskinesia Rating Scale, a tool that was used to measure the drug’s impact in trials.

“Dyskinesia can significantly compromise quality of life for people with Parkinson’s,” says Todd Sherer, MJFF CEO. “We are pleased that patients have another option to manage this aspect of the disease and glad the Unified Dyskinesia Rating Scale — a tool our support helped develop and validate — could show clinical efficacy of GOCOVRI for the treatment of dyskinesia.”

Extended-release amantadine is a reformulation of a currently available generic immediate-release version, which is approved to treat Parkinson’s symptoms. (Read more about this and other medications for Parkinson’s disease.)

Read more about extended-release amantadine.

Register for Fox Trial Finder to participate in dyskinesia and other studies to advance PD understandings and therapies.

Source: Fox Feed Blog

Find a Potion for Parkinson’s

PAA is thrilled to be a part of the Find a Potion for Parkinson’s event – a 10K/5K and 1 mile fun run/walk from our friends in Jasper on Halloween morning. All proceeds benefit Parkinson’s disease research and we can’t wait to see you there!

Location: Jasper, Alabama (Gamble Park) 10K/5K starts at 9:00 – Fun run/walk starts at 8:30

  • Please click this link to download an entry form
  • Entry Fee: 10K: $30 5K: $25 Fun Run: $15 Due by Friday, October 16th.
  • If you sign-up by October 16th, you are guaranteed a t-shirt.
  • After October 16th through day of race, entry fees are: 10K: $35, 5K: $30, Fun run: $20
  • T-shirts are not guaranteed after October 16th. We will order a few extra, but they will be issued first come, first serve.
  • There will be a Packet Pick up (Bibb and shirt) at Inspire Fitness (511 19th ST West) Friday, October 30th from 4pm-6pm. If you can’t make the pickup, you may pick your packet up the day of the run at 7am.
  • If you plan to register for the run on October 31st, please be at Gamble at 7am. Registration will close at 7:45 AM.
  • Minimal age for the 10k/5k portion is 14, with parental consent.
  • There will be a costume contest. The judging will be held prior to the 10k/5k at 8:00.
  • Costumes are optional. Please, NO scary costumes! We want happy , wacky, silly or heroic costumes. You will be disqualified for scary costumes.
  • Categories for Costume Contest: Team/Group and Kids Individual
  • All participants in the 10k and 5k will receive “Finisher Medals.”
  • Trophies will be awarded at the end of the race for the top 3 male and top 3 female runners who participated in the 10K and 5K.
  • Please click this link to download an entry form
Birmingham Symposium

2015 Birmingham Symposium: Living Your Best Life with Parkinson’s Disease

The Parkinson Association of Alabama (PAA) is thrilled to host its annual Birmingham Symposium on Saturday, June 13 at the Embassy Suites in Hoover from 8:00 AM to 1:00 PM. Register online now!

Check-in and Breakfast are from 8:00 – 8:30 AM. The program is from 8:45 AM – 1:00 PM and includes a boxed lunch. Admission is free with registration, but donations are appreciated and may be submitted online or at the event. Space is limited, so we do encourage everyone interested in attending to register online.

The theme for this years forum is Living Your Best Life with Parkinson’s and we encourage anyone affected by PD to attend. Whether you’re a PD patient, caregiver, medical professionalthought leader, or simply want know more – the Birmingham Symposium offers something for everyone.

Contact the PAA Executive Director, Mary T Miller, for more information.

 

The Case For A National System Protecting Research Subjects

By Jean Burns

Can you imagine facing experimental brain surgery knowing that if you had a stroke on the table, your family’s only recourse to get Long term care for you would be to sue the federal gov’t?  I know how it feels. I took that risk.

I hope you will read this article about my participation in a recent NIH Bioethics Grand Round:

http://nihrecord.nih.gov/newsletters/2015/02_27_2015/story1.htm

Don’t humans who volunteer for risky clinical trials deserve a safety net? Isn’t it time for change? If the research community that experiments on human beings is unwilling to care for those whom they may damage during research, why should humans continue to volunteer? (and by the way, I DO believe in fairness & justice.) Can we start making noise about this problem? I need your help. ALL  human clinical trial participants need your help.