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!
For Caregivers: 8 Ways to help someone you love manage PD
When someone you care about has Parkinson’s disease, you see firsthand the effects the condition can have on someone. Symptoms like rigid movements, poor balance, and tremors become part of their day-to-day life, and these symptoms can worsen as the disease progresses.
Your loved one needs extra help and support to stay active and preserve their quality of life. You can help out in a number of ways — from offering a friendly ear when they need to talk, to driving them to medical appointments.
Here are eight of the best ways to help someone you love manage Parkinson’s disease.
1. Learn everything you can about the disease
Parkinson’s disease is a movement disorder. If you’re a caregiver for someone living with Parkinson’s, you’re likely familiar with some of the symptoms of the disease. But do you know what causes its symptoms, how the condition progresses, or what treatments can help manage it? Also, Parkinson’s doesn’t manifest the same way in everyone.
To be the best ally for your loved one, learn as much as you can about Parkinson’s disease. Do research on reputable websites like the Parkinson’s Foundation, or read books about the condition. Tag along for medical appointments and ask the doctor questions. If you’re well informed, you’ll have a better idea of what to expect and how to be the most help.
2. Volunteer to help out
Everyday responsibilities like shopping, cooking, and cleaning become much more difficult when you have a movement disorder. Sometimes people with Parkinson’s need help with these and other tasks, but they may be too proud or embarrassed to ask for it. Step in and offer to run errands, prepare meals, drive to medical appointments, pick up medications at the drug store, and help with any other day-to-day tasks they have difficulty with on their own.
3. Get active
Exercise is important for everyone, but it’s especially helpful for people with Parkinson’s disease. Research finds that exercise helps the brain use dopamine — a chemical involved in movement — more efficiently. Fitness improves strength, balance, memory, and quality of life in people with this condition. If your friend or loved one isn’t staying active, encourage them to get moving by taking a walk together every day. Or, sign up for a dance or yoga class together; both of these exercise programs are helpful for improving coordination.
4. Help them feel normal
A disease like Parkinson’s can interfere with the normalcy of someone’s life. Because people may focus so much on the disease and its symptoms, your loved one may start to lose their sense of self. When you talk to your loved one, don’t constantly remind them that they have a chronic disease. Talk about other things — like their favorite new movie or book.
5. Get out of the house
A chronic disease like Parkinson’s can be very isolating and lonely. If your friend or family member doesn’t get out much, take them out. Go to dinner or a movie. Be prepared to make some accommodations — like choosing a restaurant or theater that has a ramp or elevator. And be ready to adjust your plans if the person doesn’t feel well enough to go out.
6. Listen
It can be intensely upsetting and frustrating to live with a condition that is both degenerative and unpredictable. Anxiety and depression are common in people with Parkinson’s disease. Sometimes just offering a shoulder to cry on or a friendly ear can be a tremendous gift. Encourage your loved one to talk about their emotions, and let them know you’re listening.
7. Look for worsening symptoms
Parkinson’s symptoms progress over time. Be aware of any changes in your loved one’s walking ability, coordination, balance, fatigue, and speech. Also, watch for changes in their mood. Up to 50 percent of people with Parkinson’s experience depression at some point in the course of their disease. Without treatment, depression can lead to faster physical declines. Encourage your loved one to get help from a trained mental health professional if they are sad. Make sure they make the appointment — and keep it. Go with them if they need help getting to the doctor or therapist’s office.
8. Be patient
Parkinson’s can affect your loved one’s ability to walk quickly, and to speak clearly and loudly enough to be heard. A speech therapist can teach them exercises to improve the volume and strength of their voice, and a physical therapist can help with their movement skills.
When having a conversation or going somewhere with them, be patient. It may take them longer than usual to respond to you. Smile and listen. Match your pace to theirs. Don’t rush them. If walking becomes too difficult, encourage them to use a walker or wheelchair. If speaking is a challenge, use other forms of communication — like messaging through an online platform or email.
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.
Top Senior Scams to be on the Lookout For
Eras Senior Network of Waukesha County coordinates S.T.O.P. – an awareness program focusing on frauds and scams aimed at older adults.
In 2014, the Federal Trade Commission created the Pass it ON campaign aimed at encouraging people to share vital information about scams. The FTC encourages you to not only share gifts and food during the holidays, but also tips about scams targeting older adults.
Since 2016, Eras Senior Network has given 47 presentations to over 1,250 seniors and their caregivers about common scams targeting the senior population. Through our research and conversations with seniors who have experienced interactions with scam artists, we’ve collected a list of popular senior scams that we hope you’ll share with those you love.
Grandparent Scam: A scam artist calls a senior and says “Hi Grandma, it’s me!” Oftentimes the senior assumes they’re speaking to their grandchild and won’t even ask for a name. Sometimes, the scam artist pretends to be crying, which distorts their voice, making it easier for the senior to believe it could be their grandchild. The scammer will then tell the senior they are in some sort of trouble and will need money wired to them – and begs their “grandparent” not to tell their “parents”. To avoid this scam, ask the caller specific questions like their name, address, or something only your true grandchild would know – and never wire money or send gift cards through the internet!
Telemarketing “Yes” Scam: Telemarketing scam artists use a simple response to steal from you. In this scam, a senior will receive a call and be asked if they can hear the caller. The natural response is to say “yes”. Unfortunately, scam artists can record this response and use it to fraudulently authorize charges via the telephone, according to the Federal Communications Commission. The best way to avoid this is by screening your calls and only answering numbers you recognize, or finding another way to answer their question without saying the word “yes.”
Medicare Card Scams: As you may know, new Medicare cards without the individual’s social security number began being mailed in April 2018. With this comes the risk for Medicare related scams as predicted by the Better Business Bureau. Scam artists may ask you for your social security number or a payment in order to receive your card. Your new Medicare card will be sent to you automatically at no charge – you DO NOT need to do anything or pay anything for your new Medicare card to be mailed to you.
Spear Phishing: Spear phishing is an email or electronic communications scam targeted towards a specific individual, organization or business. Emails that look like they are from a friend or family member can actually be attempts to steal data. Before clicking on the message, hover your mouse (without clicking) above the sender’s email address to see if it is from the person you know. Phone calls may showing caller identification from a known person can also be spear phishing attempts. Once you realize the caller isn’t your friend or family member, hang up without saying anything!
Sharing what you know about frauds and scams may be the best gift you can give someone. If you feel like you have been a victim of a fraud or scam, contact your local police department by calling their non-emergency number.
Kathy Gale is Executive Director, Eras Senior Network, Inc. and a member of the Wisconsin Attorney General’s Task Force on Elder Abuse. S.T.O.P. Senior Frauds and Scams is brought to you by Eras through a grant from the Wisconsin Consumer Antifraud Fund at the Greater Milwaukee Foundation and the United Way of Greater Milwaukee and Waukesha County. More information about Eras Senior Network, Inc. can be found at www.ErasWaukesha.org.
VA Changes Aid & Attendance Benefit
Starting Oct. 18, the VA will review not just current assets, but records from the previous three years when deciding a veteran’s asset-based eligibility for VA Pension benefits — commonly called Aid and Attendance (A&A) benefits. However, transfers of assets completed before Oct. 18 will not be counted against veterans or their surviving spouses.
A&A helps veterans and their surviving spouses pay for in-home care, assisted living-, memory- or nursing care as well as medical supplies and medicines. These pension benefits are available to service members (who are older than 65) or their surviving spouses. Additionally, the service member must have been honorably discharged after at least 90 days of service with at least one of those days during a wartime period.
A&A applicants must meet limited asset requirements, which will now be a little more complicated to calculate. On the bright side, the VA raised the net worth limit to $123,600, which is the maximum Medicaid Community Spouse Resource Allowance for 2018 and is indexed for inflation. Previously, the net worth limit was not firm, but was generally around $80,000 for a married veteran.
Net worth includes assets in bank accounts, stocks, bonds and commercial or secondary property holdings. But starting this month, it will also include one year’s Income for VA Purposes (IVAP), including disbursements from annuities or trusts. To calculate IVAP veterans and surviving spouses can deduct certain unreimbursed monthly care expenses, including skilled nursing, in-home care (even if provided by a non-spouse relative), assisted living costs, and long-term care and health insurance premiums.
Net worth does not generally include the veteran’s primary residence or vehicle. However, the new rules stipulate that the residence exemption only applies to homes on two acres or less, unless the additional acreage is unmarketable because of zoning or access restrictions, for example.
A family farm could be treated the same as a luxury estate. Also, if a veteran sold his home (because he was living in a nursing home) the sale could disqualify him from receiving A&A benefits. To avoid this outcome, an estate planning attorney can show you pre-planning tools that can protect your assets and your benefits.
If a veteran or surviving spouse applies for A&A benefits and gifted or transferred assets into certain trusts or annuities in the preceding three years, a penalty period will apply. The penalty period is calculated by dividing the value of the gift by the Maximum Monthly Pension Benefit, currently $2,169.
In light of the recent changes, veterans who may need nursing or home-health services should examine their finances at least three years before they are eligible for A&A. Nationwide, the median cost of long-term care currently ranges from $3,750 a month for assisted living to $8,121 monthly for a private room in a nursing home. These costs could easily wipe out your life savings.
As part of the new regulations, the VA is strictly enforcing its requirement that veterans only work with accredited attorneys or agents. A VA-accredited attorney can help veterans and surviving spouses navigate the VA pension process and evaluate how the pension may affect the rest of the veteran’s estate plan including Medicaid and Medicare benefits, income tax, inheritance tax and other financial factors.
The rising costs of long-term care are a burden our veterans should not have to bear alone. If you need help figuring out how to manage these costs, consult with a trusted, VA-approved elder law attorney about your options.
2018 was a big year!
The whole Symposium was excellent from beginning to end, including the meals and the informational booths. It was the best program I have attended.
Thank YOU for all the wonderful educational and supportive events and resources you provide for us caregivers. It means to much to know you’re there for us too.
I so appreciate WPA offering a Parkinson’s Dance Class in our area. We really enjoy the opportunity to participate and reconnect with people we knew from our support group!
Through our surveys, conversations, and emails, you have shared some great feedback with our staff about WPA’s growth and expansion over the last year. We have increased the number of programs we hold throughout the year, and added new locations around the state where we offer these programs. The number of attendees who attend these programs has nearly doubled in just a year!
Additionally, WPA’s Annual Symposium in June had over 500 people register to attend! So many of you wanted to come, we moved to a new venue. And we’re looking for another – even bigger – venue for 2019! THANK YOU to our awesome sponsors and vendors who support that program, and who allowed it to be FREE for every attendee this year.
WPA’s office moved! Our new space in Brookfield is a warm, inviting space that allows for small meetings on site. We are close to I-94, which allows us to keep moving across the state to support YOU!
In order to realign WPA’s Mission Statement with our goals and program offerings, our Board of Directors revamped the statement: Providing hope, community, support, and resources for people with Parkinson’s and their loved ones. This new mission statement truly shows what WPA is able to provide for YOU. We are a broad and diverse organization, providing you with what you need as you navigate life with Parkinson’s – whether it’s your own Parkinson’s, or that of a loved one.
We hired Laurie Couillard, as director of group engagement. Laurie’s entire job is to work with our nearly 150 support groups and exercise groups around the state, connecting them with the resources they need. WPA is also helping new groups and exercise classes start up – watch for more classes and groups coming to your area!
THANK YOU for all the support and feedback you have provided to us over the last year. We are here to serve you, and we look forward to seeing you at a program or group meeting soon!
Gary Garland | Executive Director | [email protected]
Laurie Couillard | Group Engagement | [email protected]
Carolyn Hahn, Marketing Communications, [email protected]
Raven Hamilton | Administrative Services | [email protected]
Jeremy Otte | Outreach & Education | [email protected]
Did George HW Bush have Parkinson’s?
The recent death of former president George HW Bush from vascular parkinsonism led many to question the difference between the condition and Parkinson’s disease.
Parkinsonism is the umbrella term for conditions that mimic symptoms similar to those experienced by people living with Parkinson’s. Vascular parkinsonism can occur in people who have experienced a mild stroke, or have restricted blood supply to the brain. The condition causes symptoms similar to Parkinson’s – including rigidity, difficulties walking and problems with speech and memory.
While the symptoms of the two conditions are similar, vascular parkinsonism is not considered a progressive neurodegenerative disease.
Dr Michael Okun, professor of neurology at the University of Florida, said: “It can be tricky to differentiate Parkinson’s disease from vascular parkinsonism (due to stroke(s)). Many experts refer to stroke induced parkinsonism as lower body parkinsonism because it tends to affect the legs more than the arms. In practice the differentiation can be tricky and sometimes both entities actually coexist.”
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.
Musician Dale Luedtke to play at WPA’s Holiday Reception
When Dale Luedtke retired from his job in IT at US Bank in October, he was looking forward to relaxing, enjoying more time with his family, and getting back to playing his guitar regularly. He started taking guitar lessons when he was ten years old, and then continued as a classical guitar major at the Wisconsin Conservatory of Music. He began performing in the early seventies, playing throughout the Midwest as a solo artist, and in several bands over the years.
After having some stiffness and tingling in his left arm and hand, Dale was diagnosed with Parkinson’s in spring 2017. “It was harder to play,” he said. “It would take three or four songs for my hand to loosen up and be comfortable playing.”
He took a break from playing after his diagnosis, but now that he’s retired, he’s picking up where he left off. While his stamina may not be quite what it was before Parkinson’s, his passion for music hasn’t diminished. He’s booking gigs at restaurants and bars in the area, and he’s looking to share his love for music with residents at some local assisted living communities as well.
You can hear Dale at WPA’s Annual Holiday Reception in Brookfield on December 5. Learn more about the Holiday Reception and register HERE.
November is National Caregivers Month
“An empty lantern provides no light. Self-care is the fuel that allows your light to shine brightly.”
– Unknown
During National Family Caregivers Month, we encourage you to take time for yourself. Explore some of these resources for support as you cope with the challenges of caring for your loved one.
National Alliance for Caregiving
AARP: Resources Caregivers Should Know About
US Department of Health & Human Services: Resources for Caregivers
American Society on Aging: Organizations that Take Care of Caregivers
Rosalynn Carter Institute for Caregiving
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