This article from LA Times focuses on Linda Ronstadt, who was diagnosed with supranuclear palsy, a variant of Parkinson disease, in 2013.
Free and inexpensive resources to help on your Parkinson’s journey
We asked, and you answered! Here are a few of your favorite FREE or INEXPENSIVE resources and tips that you have found helpful in dealing with your Parkinson’s.
Barb in Davenport: I use the CALM app on my phone. It’s not free but it is so worth it. Check it out for high quality meditations, sleep stories, daily inspiration, etc.
Nancy in Mount Pleasant: Subscribe to “Brain & Life” magazine. It’s helpful and free!
Bruce in Kaukana: I have Parkinson’s and we use a free app called Life360. It allows you to add family members and you can see/follow them as they are driving or riding in a vehicle. It gives some piece of mind knowing you can see where a person is while driving. You can add your aging parents, young drivers, drivers with or without a disability.
Anna in Milwaukee: The “Every Victory Counts” manual from Davis Phinney Foundation. The digital version is free, or the print version is $5.50. The Parkinson’s Foundation offers their free Aware in Care kit as well.
Joel in Fond du Lac: The Parkinson’s Playbook by Robert W. Smith. It’s available on Amazon for $14 and includes some tips on lifestyle improvements and healing techniques.
Jason in Whitewater: WPA’s program last week in Janesville was great, and connected me to a local gym.
Susan in South Beloit: I used a music stand to put my heavier books on when I’m reading. Also, I go to the YMCA several times a week to take water exercise class. It’s refreshing, easy on my joints and a great way to make new friends.
Have more ideas to share? Email [email protected] and watch for a future article!
“Sometimes, art can communicate what words cannot”
Framing OFF Through Art is a monthly art series inspired by the stories of people with Parkinson’s and their carers.
Each piece of art is made by artists with a personal connection to Parkinson’s, who partner up with people living with the condition to create art that symbolises one of their symptoms. The pieces focus on Parkinson’s ‘off’ episodes, which are the periods between treatment when symptoms re-emerge.
Artist Julie Beezy, known as Julie B. – who created the first piece last month – said: “I was honoured to be asked to be a part of this initiative. I am an artist and create pieces that can reflect many different meanings, so it was very special to create a piece that will, hopefully, help someone communicate something so complicated and emotional.”
“My mother has Parkinson’s. She was diagnosed about 10 years ago but keeps a lot of her feelings and symptoms about her diagnosis private. Working on this initiative really opened my eyes to what she experiences and how important communication is – with not only your healthcare team but your family and support system.”
For the initiative, Julie partnered with Steve Peters, who was diagnosed with Parkinson’s in 2012, and his wife and care partner, Leslie. They created ‘Reflections’ – a sculpture inspired by Steve’s journey with his condition.
Explaining the meaning behind her art, Julie said: “The four silhouettes represent Steve, his wife Leslie, and their two children. The tulip-covered silhouette at the center is a nod to Parkinson’s advocacy and the broader community, which are very important to the Peters family.”
Julie believes art can help people deal with their condition, especially at a time when it is difficult to verbally communicate.
“Sometimes, art can communicate what words cannot. Some aspects of Parkinson’s cannot be seen, so the emotional side of art can better communicate these symptoms. The release this artwork provides, not only creating it but also seeing it, can be beneficial.”
Taking part in the initiative has also provided Julie with a newfound understanding of her mother’s Parkinson’s experience.
“My mother kept things very private,” she said, “and after my experience with Framing OFF Through Art, I realised how lonely it can be. It is important to talk about how you are feeling with your family and care team.
“I hope creating this piece for Steve will help someone else with Parkinson’s live better and understand the importance of communication.”
To find out more about the Framing OFF Through Art initiative, created by US biotech company Acorda Therapeutics, click here.
The sculpture, titled ‘Reflections’, was inspired by Steve’s Parkinson’s journey.
WPA on The Morning Blend!
Jeremy Otte, director of outreach & education, and Dale Luedtke, a musician with Parkinson disease, were featured on The Morning Blend, a morning talk show on TMJ4 Milwaukee. Check it out!
WPA Podcast
We recently launched a Podcast/Online Radio Show!
We will create a new episode every other week, and we’ll interview doctors, people with Parkinson’s, caregivers, therapists and more!
Radical PD treatment tested in patients
A radical Parkinson’s treatment that delivers a drug directly to the brain has been tested in people.
Patients in the trial were either given the drug, which is administered via a “port” in the side of the head, or a dummy treatment (placebo). Both groups showed improved symptoms, meaning it was not clear if the drug was responsible for the benefits. However, scans did find visual evidence of improvements to affected areas of the brain in those given the drug. The study’s authors say it hints at the possibility of “reawakening” brain cells damaged by the condition.
Other experts, though, say it is too early to know whether this finding might result in improvements in Parkinson’s symptoms. Researchers believe the port implant could also be used to administer chemotherapy to those with brain tumours or to test new drugs for Alzheimer’s and stroke patients.
Parkinson’s causes parts of the brain to become progressively damaged, resulting in a range of symptoms, such as involuntary shaking and stiff, inflexible muscles. About 145,000 people in the UK have been diagnosed with the degenerative condition, which cannot be slowed down or reversed.
For this new study, scientists gave patients an experimental treatment called glial cell line-derived neurotrophic factor (GDNF), in the hope it could regenerate dying brain cells and even reverse the condition. Participants underwent robot-assisted surgery to have four tubes placed into their brains, which allowed GDNF to be infused directly to the affected areas with pinpoint accuracy, via a port in their head.
After an initial safety study of six people, 35 patients took part in a nine-month “blinded” trial, where half were randomly assigned to receive monthly infusions of GDNF and the other half dummy infusions.
Dr Alan Whone, principal investigator, said patients in the trial had, on average, been diagnosed eight years previously, but brain scans of those given the drug showed images that would be expected just two years after diagnosis.
He said: “We’ve shown with the Pet [positron emission tomography] scans that, having arrived, the drug then engages with its target, dopamine nerve endings, and appears to help damaged cells regenerate or have a biological response.”
Tom Phipps, 63, from Bristol, said he had noticed an improvement during the trial and had been able to reduce the drugs he takes for his condition. Since it ended, he has slowly increased his medication but is continuing to ride his bike, dig his allotment and chair his local branch of Parkinson’s UK.
“My outcome was as positive as I could have wished for,” he said. “I feel the trial brought me some time and has delayed the progress of my condition. The best part was absolutely being part of a group of people who’ve got a similar goal – not only the team of consultants and nurses but also the participants.
“You can’t have expectations – you can only have hope.”
Following the initial nine months on GDNF or placebo, all participants had the opportunity to receive GDNF for a further nine months.
By 18 months, when all participants had received GDNF, both groups showed moderate to large improvements in symptoms compared with their scores before they started the study. But the authors say the results need to be treated with caution because of the possibility of the placebo effect – when a patient feels better despite taking a medicine with no active ingredient.
Researchers hope that further trials could look at increasing the doses of GDNF or the duration of treatment.
Experts said it was “disappointing” that the difference in symptoms was not significant. But they said the study was still of “great interest” and warranted follow up research.
The findings from the trials are published in the medical journals Brain and the Journal of Parkinson’s Disease.
The study also features in a two-part BBC Two documentary series, The Parkinson’s Drug Trial: A Miracle Cure? on 28 February and 7 March, at 21:00. (Viewable only from the UK.)
WPA in the Community
Assisted living communities are prepared to care for older adults, but they aren’t always familiar with Parkinson disease. When a new resident has Parkinson’s, they turn to WPA for help. Jeremy Otte, WPA’s director of outreach & education, is happy to connect with these facilities and spend time training their staff to recognize some of the unique challenges presented by Parkinson’s.
“We are a RCAC assisted living facility,” said Bonnie Cohn, RN, campus administrator for ProHealth Care Regency Senior Communities. “We see many residents that move in with very minimal effects of Parkinson’s and see how quickly their disease can progress.”
Regency Senior Communities recently invited Jeremy to help educate their staff. He visited their campuses in New Berlin, Muskego, and Brookfield, and gave five presentations for employees on different shifts.
“It was wonderful for him to be here to explain the different stages and what to watch for. It helped them to understand the reasons that a resident may have ‘freezing’ episodes, difficulty getting their thoughts across, or slow mobility,” Bonnie told us.
Jeremy also discussed the importance of administering medication at a certain time, helping staff to understand the impact medication can have on a resident’s quality of life. She was grateful that he helped the staff understand how to assist a resident who is have these issues.
If you are interested in having Jeremy speak at your community or agency, call our office at 414-312-6990.
How Music Transforms a Man with PD
Before Parkinson’s disease changed his life, Larry Jennings loved to sing, dance and play his guitar. A decade after his diagnosis, the 73-year-old Oklahoma man is once again able to dance with his wife, thanks to the therapeutic power of music.
Jennings’ remarkable improvement was captured on video that has gone viral since his physical therapist Anicea Gunlock shared it on Facebook. The video at first shows Jennings struggling to walk around his home in Hartshorne, Okla., even with the help of a walker.
But when Gunlock started playing music on her cellphone, Jennings’ stride immediately improved. Within a couple of minutes, Jennings was able to let go of his walker and even lead Gunlock in a dance.
“I’d never seen anything like it,” Gunlock told CTVNews.ca in a phone interview Thursday.
Gunlock explained how, after her very first session with Jennings yielded no real improvements in his gait, she went home and started researching therapies for Parkinson’s disease, a neurodegenerative disorder that can severely limit a patient’s movements.
She came across a study that used music to help patients improve their gait and decided to try it out with Jennings. Gunlock said she spent a considerable amount of time finding the right song – nothing too fast or too slow. She eventually settled on “Good Ole Boys Like Me,” a 1979 country song by Don Williams.
“When I went back a couple of days later to do it with Larry, it was just astounding,” Gunlock said. “Literally, it was instantaneous results.”
At one point in the video, Jennings is also seen singing along to “Good Ole Boys.” Since Jan. 5, the video has garnered more than nine million views.
“I’m really happy that it has been seen by so many people,” Jennings’ wife Kathy said, describing how everyone was “in tears” when her husband danced across the floor for the first time.
Now, “he can dance with whoever is around,” Kathy told CTVNews.ca. “We danced all over.”
She said caregivers often get discouraged as Parkinson’s disease continues to rob their loved ones of movement and speech. But she’s always been hopeful that her husband’s condition would improve.
“With his illness, you have to not give up,” she said. “We’re hoping that he’ll get even better.”
The power of music and dance
Music and dance have long been used to help Parkinson’s patients improve their movements and motor skills. A number of Canadian researchers have been involved in the global effort to better understand the therapeutic benefits of music for people like Jennings.
“Right now, nobody has any idea what is going on in the brain to make this happen,” said Jessica Grahn, a professor at Western University in London, Ont., who has been researching the way music and rhythm are processed in the brains of people with movement disorders like Parkinson’s.
She said there seems to be “great variability” in how Parkinson’s disease patients respond to music. Some, like Jennings, show an instant response, while others show little to no improvement.
“One of the things we’re really interested in is…what is it that makes music effective for any given patient?” Grahn told CTVNews.ca.
One of the working theories, she said, is that music enables the brain of a Parkinson’s patient to “bypass the faulty circuitry” caused by the disease. Many patients struggle with internally-generated movements — trying to get up and walk across the room, for example– only to realize that their brain is not receiving the signal. But reflexive movements, such as catching a ball thrown in their direction or dancing to music, seem to remain intact, Grahn said.
For Alice-Betty Rustin, who was diagnosed with Parkinson’s disease six years ago, music and dance programs have been more than just physical therapy.
“It’s also a great social (activity),” the 79-year-old Toronto-area resident said. She has seen many other people with Parkinson’s benefit greatly from dance programs, including one offered at Canada’s National Ballet School.
Gunlock, the physical therapist in Oklahoma, said she decided to share her video online in hopes it would help other Parkinson’s patients and the therapists who work with them.
“The response has been amazing,” she said.
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