Check out this activity calendar to keep yourself active and engaged this month!
February 2021 Activity Calendar
Check out this activity calendar to keep yourself active and engaged this month!
WPC Launches Dual Language Webinar Series
The World Parkinson Coalition is headed to Spain for the 6th World Parkinson Congress from June 7-10, 2022. In order to help prepare delegates who live with Parkinson’s or care for someone with Parkinson’s, they are launching the first ever WPC dual language webinar series in English and Spanish. Each topic covered is a topic that people with Parkinson’s have identified in survey data that they want or need more information to better understand and to be able to make more informed decisions around treatment options.
We want our community members to live their best possible lives, but also to be able to articulately speak about Parkinson’s. The more they know about this disease, the better they can explain their needs to their healthcare team and better educate their families and communities.
Each set of webinars will use bi-lingual Parkinson’s experts. These experts will present and take questions in two webinars back to back. The first webinar will be in English. Once this session ends, they will take a short break and then will give the same talk in Spanish. We believe that it’s important for people to hear about their disease and treatment options in their native language directly from the experts.
May 2020 Activity Calendar
Check out this activity calendar to keep yourself active and engaged in May!
Your Parkinson’s tremor printed in 3D
Parkinson’s Life talk to two of the creatives behind ‘Printed by Parkinson’s’, a Berlin-based art collection that saw 3D printers ‘affected’ with the data of six people with Parkinson’s in order to replicate their individual tremors – and visualise the everyday difficulties facing people with the condition
A team of creatives from Berlin, Germany, are combining art, technology and Parkinson’s in an innovative new fundraising project.
As part of the project, organisers asked six people living with Parkinson’s to choose an object that they found difficult to use due to their symptoms. The team then used kinetic and neurological data to create a 3D printer which mirrored their personal Parkinson’s symptoms, and printed each object in bronze – creating art that reflects their struggles with the condition.
We spoke to Reiner Gorissen and Marlon von Franquemont, the two creatives behind the fundraiser.
Hello, thanks for talking to Parkinson’s Life. What’s your story and your connection to Parkinson’s?
Hi, I’m Reinier Gorissen and this is Marlon von Franquemont. We’re creatives who work at INNOCEAN Berlin. We produce advertising campaigns for global brands, but also try to find projects that could help important causes.
We started the ‘Printed by Parkinson’s’ project after a colleague had two family members diagnosed with Parkinson’s. We realised that, like most people, we didn’t know anything about the condition – and we wanted to change that.
How did you come up for the concept of ‘Printed by Parkinson’s’?
R.G: While planning, we learned about the Parkinson’s research projects conducted by Charité, one of Europe’s biggest university hospitals, and decided to put our minds together to support them.
We wanted to create a concept that would educate people about Parkinson’s and support the research at the same time. When we brought the ‘Printed by Parkinson’s’ idea to Charité, they instantly embraced it.
Who worked on this project with you?
M.V.F: The project brings the medical, tech and art world together. It was overwhelming to see how all involved parties embraced our initiative and worked long hours to make it happen.
Charité involved their patients by recording their data, production company MediaMonks was responsible for the 3D printing and the project’s website and creative content agency Cosmopola produced the photography and film material. As the initiator of the project, INNOCEAN Berlin created all marketing-related assets and organised the exhibition.
How was the data used to create the 3D models?
R.G: First, we recorded the kinetic and neurological data of the participants using electroencephalography (EEG) systems – which monitor electrical activity in the brain – and accelerometers at Charité.
The production company MediaMonks then turned the data into algorithms, devising one for each participant.
After a long period of testing, we managed to 3D print the objects selected by each patient while the printer was affected by their personal Parkinson’s data.
Why did you settle on 3D printing over more traditional art forms?
R.G: Parkinson’s is a very complex condition and most people don’t know how significant the impact of it is on people’s lives. By using technology and art, we were able to break through the clutter and also engage younger audiences. The art objects instantly give people an idea how Parkinson’s affects lives – and invite people to learn the stories behind the objects.
Why did you think using seemingly simple, everyday objects would make an impact on those outside of the Parkinson’s community?
M.V.F: We believed that the collection would be most impactful if each object portrayed a personal story. That’s why we asked participants to name an object that represented a job, hobby or activity that was affected by the onset of their Parkinson’s.
Most people outside the Parkinson’s community don’t know much about the condition. They often think it only affects older people and don’t know that Parkinson’s has more than 40 symptoms. The ‘Printed by Parkinson’s’ collection visualises the daily struggles that people have with simple tasks like using a pen or a camera.
How was the collection received by the general public, the participants involved – and by people with Parkinson’s?
M.V.F: The response has been great from all directions. The collection was shared on medical, tech and art platforms all around the world and was broadcasted on multiple TV channels in several different languages.
We also received great feedback from those who took part. On top of that, others showed interest in sharing their story – and we hope it inspires more people to be open about their condition as people must keep sharing their story to make the public aware of the condition.
How much money has been raised so far from sales?
R.G: We have received multiple bids, but unfortunately can’t reveal the digits. Let’s just say we’re very proud of the offers – all of which will go towards research at Charité.
Do you have any plans for further Parkinson’s-related art projects or campaigns?
M.V.F: Definitely. In fact, there are some projects on the way already. Hopefully we’ll be able to share them with you soon.
Reiner Gorissen (left) and Marlon von Franquemont (right), the creatives behind ‘Printed by Parkinson’s’.
“Poor Me”? Or “Lucky Me!”
Laurie Prochnow is a recruiter and a business owner in Wausau. She was diagnosed with Parkinson’s 6 years ago, and she launched a PD Support Group in Wausau in early 2019.
Together with her company, Management Recruiters, Laurie put together a couple of great videos sharing some of the lessons she has learned over the last several years of having Parkinson’s.
Do You Know How Lucky You Are?
While my grandkids were here last week, we read books every night before bed. And, of course, each night at least one book had to be by Dr. Seuss. The night before they left, we read “Did I Ever Tell You How Lucky You Are?“
It starts out by offering some rather sound advice:
“When you think things are bad,
when you feel sour and blue,
when you start to get mad …
you should do what I do!
Just tell yourself, Duckie,
you’re really quite lucky!
Some people are much more …
oh ever so much more …
oh, muchly much-much more
unlucky than you!”
Of course, Dr. Seuss then spends the rest of the book expounding on all the different ways the reader is lucky as a ducky.
Most people would agree that having been handed a diagnosis of Parkinson’s disease is anything but lucky. In fact, it can be downright scary. Even so, there are things to be thankful for. Things that cause you to pause and say, “I am so lucky” or “I am so blessed.” Things that take your mind off the unknown. Things that give you hope.
Today, I fell
I was puttering in my yard, trying to eradicate the wounded and the dead and replace them with the new. I stepped down on the shovel to finish digging the hole for a salvia plant, and I lost my balance.
It seemed as if I was falling in slow motion.
On the way down, all I could think of was hitting my head on one of the rocks that line the pathway. Some of them are sharp. I fell hard on my arm and then, with a rocking motion, came to a halt, my head never touching the ground. I waited a minute to assess the damage before trying to get up. No pain. No scratches. I was lucky. I was blessed. Given what could have been a terrible accident (considering the DBS wires tucked in my brain), I was indeed blessed.
Life is so beautiful
I went over to my grandson’s house yesterday to help him and his mom weed their backyard. When we had finished, he began yelling for his mom and me to “Come here. Quick! Come here!” He was jumping up and down (literally) with such joy on his face that I was certain he’d found a bug he’d never seen before. (Or perhaps George, “his” praying mantis, had shown up again.)
I approached where he stood, next to a small, bushy plant. He looked at the plant — a weed, by most standards — and with great excitement exclaimed, “It’s so beautiful!”
It was a smallish plant with little yellow flowers scattered here and there. To him, it was so beautiful.
Oh, how lucky I’d be if I could see the world through the eyes of a child. But wait! I did!
Oh, how lucky I am!
“Thank goodness for all of the things you are not!
Thank goodness you are not something someone forgot,
and left all alone in some punkerish place
like a rusty tin coat hanger hanging in space.” —Dr. Seuss
Caregivers: Considering an adult day program? Trust your instincts.
Baby Boomers, more than 77 million strong, are also known as the Sandwich Generation. They are the ones raising their own kids and having to care for their aging parents at the same time. In one way, an enviable position to be in for those whose parents are in good health and maintain an active lifestyle. But for other Boomers whose parents have chronic health issues, are isolated or depressed, the responsibility can be daunting and overwhelming to you, the caregiver.
One solution that could bring you some relief is a community-based program known as adult day health care. There are more than 4,000 centers across the country with more than 78 percent operating on a non-profit basis. All medical model adult day health care programs are affiliated and licensed under nursing homes. If you are considering an adult day health care program, here are some tips to help you get started in choosing the one best suited for your loved one.
Selecting the Appropriate Adult Day Health Care Model
First, decide which type of adult day health care program you need. The two types are: medical and social.
- Medical Model Adult Day Health Care Program: The medical model program offers adults who are chronically ill or in need of health monitoring access to nursing care, rehabilitation therapy, social work services, and assistance with personal care. Medical model programs have a registered nurse and rehabilitation therapists on site.
- Social Model Adult Day Health Care Program: This is the most common type of adult day center. The main function of the social model is to provide seniors with supervised care in a safe environment, as well as a place to socialize and stay physically and mentally active.
Round-Trip Transportation is Key
Most adult day health care programs provide door-to-door, round-trip transportation. The vans should be equipped with an electronic lift and other equipment to accommodate people in wheelchairs, walkers or canes.
Trust Your Instincts
As Barbara Walters, the television celebrity and news personality says, “Trust your gut.” Ask yourself some questions when visiting the adult day care health care programs. What’s the first impression you have after walking through the door? Are the staff and patients happily engaged in activities together? Are the recreation and dining areas clean? Are the walls brightly decorated with patients’ artwork? Are there people who speak my language or come from a similar background? Are the activities offered age appropriate for me? Trust your gut!
Emergency and Safety Plans
Every adult day health care program must have a medical and safety emergency plan. Ask the program’s director or the person who takes you on a tour to show you the written plan. Feel free to ask questions. For example, you could ask: What’s the procedure if someone goes into diabetic shock; or if someone falls? In an emergency, how are clients evacuated from the center? When touring the facility, notice if there are smoke detectors mounted on the walls. Do you see fire extinguishers? Ask if they have a defibrillator on the premise. Safety first!
Activities for All
Adult day health care programs should have a posted weekly or monthly calendar of activities and events. If it’s not already posted, ask for it when you’re on your tour. Offerings should range from group activities such as exercise programs and drumming circles or to activities such as arts and crafts, dominoes, or crocheting. Ask whether they provide trips to museums, shopping malls, baseball games or the local theater. Do they bring in outside guests to entertain, educate or inform individuals? It will quickly become apparent if the program is going the extra step to keep individuals motivated and actively engaged.
You Are What You Eat
Adult day health care programs generally provide at least one healthy meal and a snack during the day. Specialty diets, such as low sodium, low sugar and low cholesterol are accommodated at most programs. Ask the center for a copy of their weekly or monthly menu and, if possible during your tour, taste the food.
Personal Grooming Is So Important
Your loved one may need some assistance with personal grooming. Does the program have adequate staff to handle those needs, such as toileting, showering and other personal care? And, for those folks who are incontinent, does the staff handle toileting with sensitivity allowing the individual to maintain their dignity.
The Choice is Yours
After evaluating and experiencing a few adult day health care programs, seeing the range of activities and enthusiasm of the staff, taking a look at the menus and simply “getting the feel” of the programs, you’ll be in a better position to select the program that you feel is the most appropriate for your loved one. It’s also a good idea to speak with participants about how they feel about the program while you are on your tour.
But in the end, the choice is yours. And remember, “Trust your gut.”
“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.
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