optimism

10 Tips for a ‘Common Sense Approach’ to Life With a Chronic Illness

While living with a chronic illness can be challenging, there are ways that you can make life easier and live a happy and fulfilling life. Establishing good habits and routines takes time, but as Gunnar Esiason points out in his blog Own It, there are some “common sense approaches” to living life with a chronic illness that everyone can find useful.

Follow Directions
It’s tempting to cut corners sometimes, especially if you’re running late or tired, but taking medications and therapies as prescribed and for the required amount of time will prevent you from becoming sick. Skipping meds or only partially doing therapies, not cleaning or maintaining equipment may save you a little bit of time in the short run, but may result in you becoming sick.

Designate a First Responder
Designate a person (or persons) who you can rely on to know what to do if you have a medical emergency. This can be a member of your family, a colleague, or a friend. Make sure they know how to respond to any exacerbations you may experience.

Be Organized
Keep any medications, equipment or paperwork that has to do with your health condition in good order. If you need to take medications at different times of the day, set reminders on your cellphone. Keep all paperwork in an organized folder so everything you need is easily found. Use weekly pill boxes to keep a week’s supply of meds ready. Ensure all equipment is cleaned after use so it’s ready for the next time.

Use Trusted Sources for Information
Dr. Google is notoriously wrong, as are most of your well-meaning colleagues and friends. Use trusted sources for information regarding your chronic illness. Non-profit organizations are great places to find accurate and up-to-date information. Your health care team is also a phone call away if you have any questions that need to be answered.

Get the Most Out of Your Appointments
Often, particularly when you’re first diagnosed, there is a lot of information to process. Taking notes when you meet your health care team will help you to remember all that you’ve been told. Also, preparing a list of questions before you go to your appointments will ensure that you don’t forget anything important while you’re there. Take a friend or family member along for support — they’ll often think of things you may miss.

Have Faith in Yourself
You may think that the journey you’re about to embark on will be too difficult or that you won’t be able to keep up with the treatments. Have faith in yourself — you are stronger than you realize. In the beginning, there will be many changes, but life will soon settle into a new normal and you’ll be surprised at how well you’re handling things.

Ask for Help
Don’t be too afraid or too proud to ask for help. Family and friends will want to help you out in any way they can, just as you would if the roles were reversed. Focus on your health and staying well, and allow others to do things for you. If you require financial aid or help to procure necessary equipment, non-profit organizations are a great place to start. Local volunteer groups can offer caregiving help as well as help around the house and garden.

Don’t Let Negative Feelings Get You Down
Feeling angry, frustrated, sad, or disappointed are all extremely normal reactions to a chronic illness, but you’ll need to work through these feelings and push them to one side. Focus your energy on getting well and try to be positive about your treatment.

Be Adaptable
It’s likely that you won’t be able to live your life exactly as you did before. Depending on the severity and type of chronic illness you have, you may find that you simply can’t do as much as you used to. Be more selective with your calendar so you have more energy and enthusiasm to enjoy each activity and event. Ditch bad lifestyle habits that could make your chronic illness worse, and try to embrace new healthy ones instead.  Learn that it’s OK to say no to people — your health comes first and they should be able to accept that.

Laugh
Laughter is great medicine. It won’t cure your chronic illness, but it will make living life with it more fun. Take time to do the things you enjoy and that give you pleasure, spend time with people who make you happy and take joy wherever you can find it.

 

Article from Parkinson’s News Today.

Read more

‘7 Years of Camera Shake’: photographer with PD publishes book

Last month, wildlife photographer David Plummer launched his coffee table book, ‘7 Years of Camera Shake’, in aid of Parkinson’s UK. Within its pages are more than 200 photos showcasing animals from around the world – all of which were taken after his Parkinson’s diagnosis. Here, in an extract from the book, David describes his journey as a professional photographer.

All art is a form of communication. As a child I obviously felt the need to communicate what I was seeing in the natural world. When I initially took up photography, it didn’t mean that much to me; I found it difficult to find inspiration – there seemed to be little art in wildlife photography. An image of a bird was invariably a black and white shot of a bird bringing food to a nest. From my mid-twenties onwards, I think my mind was mature enough to understand what I was dealing with, and it was the mix of this artistic element and photographic technique that wildlife photography requires that really grabbed me.

In the early years, I was not original. I looked at another wildlife photographer’s images and tried to copy or emulate them. In doing so, however, I was learning the craft; the formulaic elements that make up a good photograph – the background control, the depth of field, the composition. Once I had grasped those formulaic elements, and learnt and practised repeatedly, they eventually became a habit.

Atlantic puffin with sand eels, Skomer Island, UK

So, in essence I had a powerful tool at my disposal, one that allowed me to communicate my experience of the natural world. I wanted people to see and experience what I was seeing; I wanted them to become part of the woodland or marshes, to see the vivid mix of colours when a kingfisher lands in front of you. I strongly feel that this art is a form of impressionism; with one single image your role as a photographer is to move your viewer psychologically. Maybe nothing profound, but rather than them seeing just the woodland, they are instead a part of the woodland floor amongst the fungi – visualising themselves walking down one of its paths through a sea of bluebells, or sensing the power behind the glare of a jaguar. Instead of just seeing a photograph, they are feeling it.

Galapágos sealions play-fighting, Galapágos, Ecuador

The obsessions have become quite intense over the years; I would fixate on getting the perfect image of a great spotted woodpecker or kingfisher to the detriment of my career. Commercially, I would have been more successful if I’d done the ‘wildlife rounds’ gaining a wider portfolio of images, from more easily sought locations. But the elusive appealed to me; images people weren’t getting, such as owls, or ocelot.

I remember spending three days in the Amazon in a hide in super-hot, humid conditions, for 12 hours a day, from before dawn until after dusk, waiting for an ocelot to walk up a dry sandy streambed. I had seen the paw prints and I realised it was a habitual routeway. I was obsessed with capturing an image of this cat.

Spotted hyena with prey, Maasai Mara, Kenya

Each day on the way to and from the hide I would brush the sand clear of footprints so I had an idea of what had passed. On leaving at the end of my third unsuccessful day, I noticed that the ocelot prints had come up the riverbed to a point just before they come into view of the hide. Then they simply veered off to the side – this gorgeous and elusive predator had realised my presence, and had simply circled around me! I loved this cat all the more, but it took me a few more years to finally get images of this stunning cat.

Sometimes these obsessions can be difficult for people around me to understand, but I cannot help it, and I’ve learned to accept it. I think most people close to me now know that I’m invariably doing one bonkers thing or another to get a picture: in a marsh in chest waders at dawn, sitting in a hedge in full camouflage, following a jaguar on foot – which I really don’t recommend by the way.

Marine iguana, Galápagos, Ecuador

I like nothing more than a burgeoning new project. Solving the problems to not only get close to the subject, but capture a photograph of it – a perfect photograph. Maybe it’s that primal hunting instinct; but hunting without killing. Indeed, to produce an aesthetic image, capturing the essence of a creature, is undoubtedly much harder than killing it. And that pursuit of perfection, of capturing the essence, is a shifting thing as time goes by; what was perfect 10 years ago may no longer be the case now, so the quest goes on. The Holy Grail. Always push for better, for different.

 

This article is an edited version of the forward from David Plummer’s book ‘7 Years of Camera Shake’, and is published on ParkinsonsLife.eu with the kind permission of the author. Article from Parkinsonslife.eu.

Read more

Be a Savvy Science News Consumer

News is everywhere, all the time. It overtakes Facebook pages, overflows email inboxes and blasts from the television. We’re inundated with information and, unfortunately, often misinformation as well. But separating the two doesn’t have to be daunting or time consuming. Start with a small but healthy dose of skepticism: Don’t believe everything you read or hear. If it sounds too good to be true, it probably is.

Then, consider these five tips:

  • Go to the original source.
    Find out where the information was published. Was it a well-respected, peer-reviewed journal, such as Nature, Science or Movement Disorders? Or was it in a newer journal that is not widely recognized by the scientific community? “Peer review” is a form of quality control, and means experts assess and approve the research.
  • Compare news coverage.
    See if and how other sites are reporting the information. Are they communicating similarly across the board or are there competing views?
  • Dig deeper.
    Don’t take everything at face value. Figure out who is reporting and why. Is there an underlying motivation, such as profit seeking (if a product is being sold, for example), a political agenda or desire for sensationalism?
  • Put news in context.
    Look to trusted sources, such as your physician or credible organizations, for the facts. Many sites, including The Michael J. Fox Foundation, blog about breaking news. Some, such as healthnewsreview.org, rate news reports on how comprehensively they inform the reader.
  • Develop a checklist to evaluate news.
    Create a set of criteria or questions you can use to gauge the accuracy of news stories. Make a list of red flags, such as words like “miracle cure,” that give you reason to pause.

Stay on top of the news by reading regularly and asking questions. Follow sites you trust or sign up for email alerts. Last, but perhaps not least, think twice before you forward an email or share a Facebook post. Make sure the information you pass on is credible — word can spread like wildfire on social media.

 

Article from Michael J. Fox Foundation for Parkinson’s Research.

Read more

Getting a Good Night’s Sleep

Parkinson’s disease creates many challenges to getting a good night’s rest. Try these tips to help you get enough rest and sleep, which is an important component of overall health and quality of life.

Getting a Good Night’s Rest

  • Make a regular, relaxing bedtime routine a habit.
  • Maintain a regular sleep schedule: get up and go to sleep at the same time every day.
  • Get plenty of bright light exposure during the day, particularly natural daytime light.
  • Decrease fluids several hours before bedtime, and go to the bathroom before getting into bed to sleep.
  • Avoid strenuous exercise, alcohol, nicotine and caffeine within 4 hours of your bedtime.
  • Use your bed only for sleeping and intimacy with your partner.
  • Banish animals from the bed!
  • Customize your sleep environment: invest in a good mattress and pillows.
  • Set the bedroom temperature at a cool, comfortable level.
  • Limit daytime napping to a 40-minute NASA nap (yes, tested by astronauts!).
  • Lie down to sleep only when sleepy. Learn to tell the difference between fatigue and sleepiness.
  • If you are unable to sleep after 15 minutes, get out of bed and engage in a relaxing activity like listening to music, meditation or reading until you are sleepy.
  • Turn off the TV. If weaning yourself of a TV habit is difficult, try a relaxation or nature recording.
  • Keep lighting and noise at low levels when trying to sleep.
  • Eliminate the common but bad habit of “checking the clock” throughout the night.
  • Limit prescription sedatives to a 2-week period; instead, try over-the-counter alternatives such as Valerian root capsules.
  • Sleep as much as needed to feel refreshed, but avoid spending too much time in bed.

Getting into Bed

  • Approach the bed as you would a chair; feel the mattress behind both legs.
  • Slowly lower yourself to a seated position on the bed, using your arms to control your descent.
  • Lean on your forearm while you allow your body to lean down to the side.
  • As you body goes down, the legs will want to go up like a seesaw.
  • DO NOT put your knee up on the mattress first. In other words, don’t “crawl” into bed.

Rolling or Turning Over in Bed

  • Bend your knees up with feet flat.
  • Allow knees to fall to one side as you begin to roll.
  • Turn your head in the direction you are rolling and reach top arm across the body.
  • Some PD patients find that silk sheets help them move better in bed.

Scooting Over in Bed

  • Bend your knees up with feet flat.
  • Push into the bed with feet and hand to lift your hips up off the bed. Then shift hips in the desired direction.
  • Finish by repositioning feet in the direction your hips moved.

Getting Out of Bed

  • Bend knees up, feet flat on the bed.
  • Roll onto your side toward the edge of the bed by letting the knees fall to that side. Reach across with the top arm, and turn your head to look in the direction you are rolling.
  • Lower your feet from the bed as you push with your arms into a sitting position.

 

Information from Parkinson.org.

Read more

Singing Helps Early-stage Parkinson’s Patients Retain Speech, Respiratory Control

Singing may help people with Parkinson’s disease — especially in its earlier stages — because it strengthens muscles involved in swallowing and respiratory control, suggests two studies from researchers at Iowa State University.

One study, “Therapeutic singing as an early intervention for swallowing in persons with Parkinson’s disease,” was published in the journal Complementary Therapies in Medicine. The other, “Effects of singing on voice, respiratory control and quality of life in persons with Parkinson’s disease,” appeared in Disability and Rehabilitation.

Parkinson’s research and current treatments largely focus on symptoms relating to motor skills, and less on those like voice impairment, even though weakness in vocal muscles affects respiration, swallowing abilities and quality of life. Voice impairments in Parkinson’s —  present in 60 to 80 percent of patients, are characterized by reduced vocal intensity and pitch, and breathy voice.

Previous research has suggested that singing can ease voice impairment and improve respiratory control in people with other diseases or conditions, leading researchers to examine if it could also aid those with Parkinson’s, especially in the disease’s early stages.

Results showed that both groups had significant improvement in respiratory pressure, including both breathing in and breathing out. Phonation time, a measure of how long a person can sustain  a vowel sound, also significantly improved. Patients also reported significant improvement in measures of both voice-related and whole health-related quality of life. Lead author Elizabeth Stegemöller conducted two separate pilot studies to determine whether a group of 25 Parkinson’s patients would benefit from light therapy, singing for 60 minutes once a week, or more intensive therapy that involved singing for 60 minutes twice a week. Board-certified music therapies conducted the sessions, which included vocal and articulation exercises as well as group singing. After eight weeks, researchers measured vocal, respiratory and quality-of-life parameters.

“We’re not trying to make people better singers,” Stegemöller said in a press release. “We’re trying to work the muscles involved with swallowing and respiratory control, to make them work better and therefore protect against some of the complications of swallowing.”

Stegemöller, an assistant professor of kinesiology at Iowa State in Ames, runs singing classes there for Parkinson’s patients. She also collaborates with Iowa State Extension and Outreach to pilot an eight-week training session in several counties across northern Iowa, with the goal of creating a DVD to train extension specialists to conduct such classes on their own.

“We do a lot of vocal exercises in classes that focus on those [vocal and respiratory] muscles,” Stegemöller said. “We also talk about proper breath support, posture and how we use the muscles involved with the vocal cords, which requires them to intricately coordinate good, strong muscle activity.”

The goal now is to expand the initiative, she said, adding that “if the DVD is an effective training tool, we’d like to have as many classes as possible across the state.”

 

Article from Parkinson’s News Today.

Read more

Microsoft shows off watch that quiets Parkinson’s tremors

SAN FRANCISCO — Tech company developer conferences always feature a wacky demo or three.

But at Build 2017 in Seattle Wednesday, Microsoft went for the waterworks at the conclusion of CEO Satya Nadella’s keynote address: it showcased a prototype watch that temporarily eliminated the arm shaking that often plagues those suffering from the neurological disease Parkinson’s.

After a speech that both heralded and warned about coming leaps in technological power, Nadella screened a video that told the story of two British Microsoft Research employees, Haiyan Zhang and Nicolas Villa, who developed the tremor-interrupting device for a BBC documentary, The Big Life Fix.

Working with graphic designer and Parkinson’s sufferer Emma Lawton, 32, the researchers developed a watch — which they named Emma — that, according to Microsoft, “vibrates in a distinctive pattern to disrupt the feedback loop between brain and hand.”

The video showed Lawton trying to draw a square with her shaky right hand, and then again, wearing Emma. Watson erupts in tears as she calls her mother to say this is the first time she’s been able to write her name in ages.

When the lights went up, Nadella welcomed both Lawton and engineer Zhang on stage, thanking them for showing that thanks “developers can have impact.”

Emma Watch remains a prototype, Microsoft says, but the developers are working with a neuroscience research team to undertake trials with a small group of Parkinson’s sufferers.

The watch works through a combination of sensors and AI (artificial intelligence) techniques to potentially detect and monitor symptoms like tremors, stiffness and instability, among others, according to Microsoft. “Once these symptoms can be identified and measured, it’s possible to develop technology and devices that help humans manage their symptoms. AI is used to classify the sensor information and elicit real-time responses on small devices like wearables.”

Microsoft stresses that Emma Watch is not a cure for the disease, which afflicts 10 million people. “Rather, its technology has the potential to help Parkinson’s patients manage symptoms that impede regular functions. The goal of further research is to determine whether Emma Watch could help other people with similar Parkinson’s symptoms.”

https://www.usatoday.com/story/tech/talkingtech/2017/05/10/microsoft-shows-off-watch-quiets-parkinsons-tremors/101517718/

Read more

Recent Photos

Check out some photos from WPA staff’s recent visits to support groups and exercise classes in Wauwatosa and Lake Geneva. To see more photos, visit our Facebook page.

 

 

 

Read more

Parkinson’s Tulip

You may have noticed that WPA uses an image of a tulip throughout our website and publications. Have you ever wondered why?

The tulip is the official symbol within the Parkinson’s community. In 1980, J.W.S. Van der Wereld, a Dutch horticulturalist who had Parkinson disease, developed a red and white tulip. Van der Wereld named his prized flower, the ‘Dr. James Parkinson’ tulip, to honor the English apothecary surgeon who originally described Parkinson’s in 1812.

You will see many variations, as PD organizations around the world use the tulip as a symbol of hope and optimism. The tulip unifies independent regional organizations like WPA, national organizations and their individual chapters, people with Parkinson’s and their family and friends, neurologists, research scientists, and more.

The tulip is a reminder that regardless of affiliation, we are one community working toward common goals: to help people with Parkinson’s live better longer, to discover better treatments, and to strive for a cure.

Read more