awareness

Storming the Hill

April 1, 2018 Awareness, Community Outreach, Research

By: Samantha Barbian

We came. We saw. We conquered. From March 19-21st my dad, Craig, and I attended the Parkinson’s Policy Forum in Washington DC. We were joined by approximately 300 other Parkinson’s advocates from around the country. The feeling of being one community and truly supporting each other was undeniable. I found it interesting hearing all the different stories how Parkinson’s has affected each persons life. No two stories in the room were exactly alike just like the disease does not effect each person’s body and mind the same.

One speaker who was so inspirational that I will never forget was New Jersey Senator Cory Booker. He told stories about his life growing up and the stories his father would tell. Near the end of his speech he revealed that his father had Parkinson’s. This quote from Senator Booker hit home with many of us:

“My dad showed me what courage was about, as he struggled with this foe of Parkinson’s, and more than that, he showed me what the power of the community is about. About people who were there for him, who counseled him, who laughed with him. About folks who understood the complexities of the challenges.”

Parkinson’s patients need that community to help them keep pushing forward and to never give up.

If you were unable to attend the Parkinson’s Policy Forum there are a few ways you can still get involved. One way is to check out the website www.parkinsonsforum.org for all the information that was shared at the conference. Another way that you can get involved is to contact your legislators and ask them to fund the National Neurological Surveillance System. This program is a database for all neurological diseases to keep track of the occurrences in our society. We are also looking for continued support of Parkinson’s research done on veterans who served in Vietnam by the Department of Defense.

If you would like more information about the forum, please contact me at [email protected].

Samantha with New Jersey Senator Cory Booker

Read more

Maximize your Mobility with Fall Prevention

April 1, 2018 Caregivers, Exercise, Life

https://vimeo.com/147745733

 

Video from Davis Phinney Foundation.

Read more

7 Home Safety Tips

March 1, 2018 Caregivers, Life

After a Parkinson’s disease diagnosis, adjustments and renovations both small and large can help make your home more comfortable — and safer — for yourself or a loved one with Parkinson’s disease, especially if gait, balance and fatigue symptoms are an issue.

Our community shared changes they made around the home that helped them. You can also find our guide to assistance products for Parkinson’s disease such as utensils with a padded, ribbed handle and non-slip shoes, which can also help make life at home with Parkinson’s disease more comfortable.

Not all of these recommendations may be the right fit for you or your loved one. Connect with an occupational therapist for personalized advice on making changes around your home. An OT can also help you plan for how to make further adjustments as the disease progresses.

1. Start with small changes, like getting rid of potential obstacles on the floor such as throw rugs and extension cords. Leave plenty of space between pieces of furniture, and create a clear path through your home.

2. Tackle the bathroom. Start by getting rid of bath mats that may slip, and add a non-slip mat to the shower or bath tub. Several commenters recommended getting an elevated toilet seat, which can help make it easier to stand back up. Be careful not to use a towel rack or toilet paper dispenser for help getting up — if possible, install safety rails instead.

3. Add more lights around the house. Light makes navigation easier and can also boost mood, one commenter noted. Touch lights and lights that respond to sound also help.

4. If it’s in your budget, install railings along walls and hallways to help with balance and prevent falls.

5. Invest in chairs that are easier to get out of, such as adjustable recliners or chairs with straight backs, firm seats and arm rests. Firm cushions can add height and help with standing, as well.

6. Consider making more significant renovations, if your budget allows, such as building ramps, stair lifts and wider doorways. Medicare covers different types of portable medical equipment, but not permanent installations.

7. Besides practicality, also make adjustments for comfort. One commenter even found a way to help her two Yorkies sleep better, too, after her husband started acting out his dreams.

 

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

Read more

Tips on Traveling with Parkinson Disease

December 1, 2017 Caregivers, Life

Traveling soon? If you have Parkinson’s disease or are traveling with someone who has Parkinson’s, some extra planning can help make the trip run smoothly. Our social media community shared advice on topics like packing up medication, getting through airport security with ease and the best times to take breaks. Check out these tips for low-stress travel before you hit the road!

1. Tell the airport, train station, etc. that you have Parkinson’s disease or are traveling with someone with Parkinson’s. You may be able to board the flight early or get extra help from a flight attendant.

2. Try to add a rest day for your trip, and schedule long layovers when possible. Take stretch breaks and exercise breaks when you can.

3. Keep your medicine in a carry-on bag in case you’re separated from your luggage.

4. Pack comfort items, extra medicine and a list of your medications and doctor’s contact information. Even if you don’t normally use a cane, walker or wheelchair, consider bringing or using one if it’s convenient.

5. Prepare for airport security. Keep your medicine in a separate bag so it’s easy to pull out if necessary. Commenters also suggested taking along a certificate from the DBS manufacturer if you had the surgery and applying for TSA pre-screening so you don’t have to take off your jacket and shoes.

6. Ask for a wheelchair at the airport – whether you need one or not. Several people with Parkinson’s and family members shared this piece of advice. Even if you don’t need one or normally use one, being in a wheelchair helps put you on the fast track in an airport, which can help cut down on stress.

7. One Twitter follower suggested staying away from mobile check-ins at the gate.

8. Consider alternatives to flying. Airports can be stressful for anyone, with or without Parkinson’s disease, and planes generally don’t have much space to move around or stretch. Some of our Facebook fans have found traveling by train, car or boat to be easier and ultimately more enjoyable than flying.

9. Try to stick with your routine from home, including taking medicine at the same time and exercising a similar amount.

10. Enjoy yourself, even if it’s at a slower pace than you’re used to.

 

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

Read more

Getting a Good Night’s Sleep

September 1, 2017 Caregivers, Life

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

31st Annual Parkinson Disease Symposium | June 23, 2017

June 1, 2017 Awareness, Caregivers, Community Outreach, Education, Life, Research

WPA will host its 31st Annual Parkinson Disease Symposium on Friday, June 23, 2017 at Country Springs Hotel & Conference Center in Pewaukee, Wisconsin.

Beginning at 8:00am, attendees can check in and visit with vendors at the Resource Fair where health and community agencies will display valuable information throughout the day. Beginning at 9:00am, the first main session will be “Understanding Parkinson Disease from a Scientific Perspective”, presented by Giuseppe P. Cortese, PhD, Postdoctoral Research Associate, Department of Neurology, University of Wisconsin-Madison. The morning breakout sessions will follow Dr. Cortese’s interactive presentation, and participants will choose from three options: “Caregivers: Being prepared for an emergency”, “Grieving ‘life as we have known it’”, and a Panel on PD exercise programs.

During lunch, the resource fair will again be open for participants. After lunch, the afternoon breakout sessions will include “Are you caring too much and laughing too little?”, “Causes and prevention of falls” and “Exercise: A targeted attack on Parkinson’s.” The closing session for all attendees will be “Nutrition for Parkinson Disease” presented by Michelle McDonagh, RD, CD, Froedtert & The Medical College of Wisconsin. The Symposium will conclude by 3:30pm.

The registration fee is $30 per person and includes educational materials, continental breakfast, and lunch. To register, CLICK HERE or call our office at 414-312-6990. Registration is required and must be received by Wednesday, June 14.

The event is sponsored by Abbvie, Medtronic and US WorldMeds.

Read more

A Practical Guide on Navigating the Workplace with Parkinson’s

June 1, 2017 Change, Community Outreach, Life

The decision to share a Parkinson’s diagnosis at work is personal. Many individual factors contribute to if or when you’re ready to disclose this information. And once the conversation begins, recurring discussions may be necessary as symptoms change or the disease progresses.

In collaboration with Marti Fischer, a career and professional development consultant, the Michael J. Fox Foundation for Parkinson’s Research has developed a two-part guide to help navigate the ins and outs of talking about Parkinson’s at work. Part I, “Sharing Your Parkinson’s Diagnosis at Work,” provides practical tips and tools for crafting a personalized strategy to bring Parkinson’s into the workplace. “Talking about Parkinson’s at Work,” the recently released Part II, recommends strategies for continuing conversations, handling common reactions and situations, and managing long-term professional relationships.

Download Part I and Part II of the guide.

People with young-onset Parkinson’s — diagnosed at age 50 or earlier — may be more likely to be in the workforce when diagnosed. Register for the next Third Thursdays Webinar to learn more about the challenges and treatments of young-onset Parkinson’s disease.

https://www.michaeljfox.org/foundation/news-detail.php?new-resource-practical-guide-on-navigating-the-workplace-with-parkinson&et_cid=884158&et_rid=225075821&et_lid=Talking+About+Parkinson%27s+at+Workem_cid

Read more

How to Cook for a Loved One with Dysphagia

May 1, 2017 Caregivers, Education, Life

The simple act of eating is anything but for those who experience dysphagia, the medical term for difficulties swallowing or eating. Millions of Americans have the condition, especially aging adults: The U.S. Department of Health suggests that about 15% of the elderly population experiences some form of dysphagia. And for those who care for elderly adults, it may be difficult to find equally nutritious and appetizing food that can be consumed.

Caregivers may feel alone or discouraged when it comes to finding and cooking dysphagia-friendly recipes. Often, they will find themselves resorting to feeding their loved ones soft, tasteless food because it is the only thing they can swallow.

But, this is not the case, and students and faculty at Speech@NYU, the online master’s in speech pathology from NYU Steinhardt, wanted to change this mindset and provide tools so everyone can take dysphagia head on in the kitchen with “Dining with Dysphagia: A Cookbook.”

The cookbook, which includes eight recipes that elevate pureed or “mushy” food to a higher standard, focuses on all of the values that are important to those who are supporting people with dysphagia: nutrition, texture and taste. Not only is this cookbook meant to be a resource, but also the catalyst to help start a larger conversation about changing the narrative of dysphagia. In fact, this cookbook all started with the NYU Steinhardt Iron Chef Dysphagia Challenge competition, during which contestants prepared food based on recipes that are easy-to-follow and easy-to-swallow. The cookbook is a result of the event and this year’s dishes include rosemary mashed potatoes, pumpkin soup and vegetarian squash chili, just to name a few.

Here are a few tips to keep in mind when cooking for someone with dysphagia:

  • Find out their favorite recipes: Talk to your loved one and determine what their food preferences are so you can create a dysphagia-friendly version
  • Focus on diversity: Mix it up by including different ingredients and balancing tastes
  • Make it a family affair: If you are worried that someone will be embarrassed or left out because they are eating “different” foods unlike the rest of the family or group, try recipes that everyone can enjoy to make the meal experience more inclusive
  • Get creative: Need more inspiration for new recipes? Consider doing recipe “swaps” with other friends or colleagues, or experiment on your own
  • Have a candid conversation: Do not be afraid to talk openly about dysphagia; Showing your support and how understanding you are of their condition is critical

It is important to remember that food should not only nourish the body, but also the soul. No one should ever assume they have to resort to simple, “mushy” food just because it is easily consumed. There are myriad options to create delicious recipes that your loved one will enjoy, and the cookbook is just one example of this.

If you would like to learn more about dysphagia, schedule an appointment with your loved one’s general practitioner. A speech-language pathologist will also be able to discuss the condition in greater detail.

To learn more about the “Dining with Dysphagia” cookbook visit https://speech.steinhardt.nyu.edu/dysphagia-cookbook/about/.
By Erin Embry MPA/MS CCC-SLP

With a dual degree in both Communication Sciences and Disorders and Health Policy and Management, Erin Embry’s approach to teaching and leadership promotes interdisciplinary collaboration at all levels of academic, clinical and professional training. She is the Director of the Speech@NYU online MS program in Communicative Sciences and Disorders and the graduate student academic advisor.

Embry teaches courses related to the clinical process, swallowing disorders, and professional issues. She is actively involved in department and school-wide curriculum development with a focus on cultivating collaborative efforts of various disciplines in the educational and healthcare settings. With over 15 years of experience as a licensed and certified speech-language pathologist, Embry has devoted her clinical and academic career to adults with acquired brain injuries and progressive neurological diseases.

http://www.caregiver.com/articles/general/cook_for_dysphagia.htm?utm_source=Caregiver+Newsletter&utm_campaign=a38e745fb9-Caregiver_Newsletter_4_25_17&utm_medium=email&utm_term=0_8c5d5e6a5e-a38e745fb9-94169813&mc_cid=a38e745fb9&mc_eid=5f3c35a028

Read more

How Google Glass can help people with Parkinson’s

May 1, 2017 Awareness

Moving Through Glass, an experimental app for Google Glass, offers people with Parkinson’s dance-based visual and musical cues routines to help them move and exercise.

http://money.cnn.com/video/technology/2015/06/09/google-glass-app-for-people-with-parkinsons.cnnmoney/

Read more

Study Making Strides Toward Parkinson’s Biomarker

May 1, 2017 Awareness, Education, Research

At the current time, there is no identified biomarker for Parkinson’s disease (PD). In other words, there is no objective measure — no lab or imaging test, for example — that can tell whether a person has PD, what type of motor and non-motor symptoms will predominate and how those symptoms will change over time.

Having a biomarker for Parkinson’s would both inform clinical care and accelerate research. A key potential biomarker is alpha-synuclein, the sticky protein that clumps in the brains of people with PD. These protein clumps — called Lewy bodies — are a hallmark of the disease thought to cause damage or death to dopamine-producing brain cells. Researchers can’t currently visualize alpha-synuclein in the brains of people with PD while they’re living. (This is, however, a priority area for the Foundation and MJFF is funding efforts to develop an agent to image alpha-synuclein in the brain.) They can, however, measure the protein in several areas outside of the brain, as alpha-synuclein is found throughout the body.

Researchers haven’t yet determined the optimal location(s) or method(s) to sample alpha-synuclein. To meet this need, in 2016, MJFF launched the Systemic Synuclein Sampling Study (S4), an observational clinical study involving 60 people at varied stages of Parkinson’s disease and 20 healthy volunteers. A new report, published in Biomarkers in Medicine, details the study’s procedures and goals. The article describes the standardized collection and analysis protocols used to measure alpha-synuclein in each participant’s spinal fluid, saliva and blood, as well as their skin, colon and salivary gland tissues.

S4 is the first study to evaluate alpha-synuclein in multiple body fluids and tissues within the same person and across a population of people at various points in PD. These results may lead to recommendations for optimal alpha-synuclein measurements in clinical trial participants as well as an understanding of how alpha-synuclein changes throughout the disease course.

As the study authors write, “The development of a peripheral alpha-synuclein biomarker would provide a valuable tool for confirming the diagnosis of PD, and possibly identification of the disease in its earliest stages, and provide a potential means of monitoring efficacy of potential disease modifying agents.”

A tool that could facilitate diagnosis and gauge the impact of therapies in development would truly change the way we’re able to conduct research and how quickly we can move therapies through the pipeline. That’s why finding a biomarker and research such as this are so critical.

Visit Fox Trial Finder to learn more about how you can participate in S4 and other Parkinson’s research studies.

https://www.michaeljfox.org/foundation/news-detail.php?mjff-study-making-strides-toward-parkinson-biomarker

Read more

Wisconsin Parkinson Association Mission

Our mission is to provide hope, community, support, and resources for people with Parkinson’s and their loved ones.

Contact

13400 Bishops Lane
Suite 120
Brookfield, WI 53005
414.312.6990
[email protected]
Follow Us On Facebook

View Our Annual Report

Click here to view Wisconsin Parkinson Association’s 2021-2022 Annual Report.

Search Our Site

Copyright Wisconsin Parkinson Association 2023