Facilitator Success Tip: Promotion
There are never too many ways to promote awareness of your support group or exercise group in your community! One of our goals is to reach everyone in a community with resources, so no person with Parkinson disease feels alone or isolated! Here are some suggestions for promoting your support or exercise group to create awareness and increase attendance in the process:
- Flyer distribution. Did you know WPA can create flyers for you? Save time and let us help! Flyers can have a big impact on awareness, and can be placed in areas such as:
- Senior centers
- Churches (many churches have Parish Nurses who welcome an opportunity to share news about local support groups – and some of the nurses can even be a speaker option for you, as they are a wealth of knowledge and eager to help with health education in the community!)
- Local connections when networking
- Libraries
- Physicians’ offices, in particular primary care, neurology and rehabilitation offices. (Ask the staff if you can place on tables or shelves in the waiting areas. Do not leave a stack, as staff is often too busy to distribute, and while well intentioned, may never get them out in the lobby.)
- This website! If you do not already have your group listed on our site, contact me immediately and we will get you set up. Many new patients look to our site for information, so let’s make sure they can find you here.
- Business cards for your group. Did you know that we can create business cards for you, listing your contact information, meeting date and location – free of change? Many facilitators are excited to be able to hand out cards at events or in the community to let others know about their groups. Even more importantly, many of our support and exercise group members have asked their facilitators to give them some cards to hand out when they meet another person with PD at a physician office or at an event. Please contact me if you are interested in having us print some cards for you.
- Local Aging & Disability Resource Centers (ADRC). Nearly every county in Wisconsin has an ADRC, and they are always willing to list your support group in their literature and post flyers at their sites. They can also be a great partner for promotion and speaking events.
• Participate in local health fairs- many hospitals and local organizations hold health fairs throughout the year, and you can promote your support group at these community events.
• Local Farmer’s Market in warm weather- this is a great way to impact community members- attendance at these type of markets is high, and you can reach many who have PD or know someone with PD.
Lessons from the Field: Meeting Resource
One activity that can help spark group conversation and increase participation in discussions is a round-robin activity. Facilitators often tell us they struggle getting members to participate and interact. Feedback indicates that while sharing time can be crucial to the success of a group, not all are willing to participate. Here is one way to be inclusive:
- Provide notecards for members to take home. Encourage them to write one issue, concern, or topic that they encounter during the month, and return with the question they would like to discuss at the next meeting. Since PD can make writing difficult, this could be typed on a computer as well.
For many, it may be easier to plan ahead for a discussion topic than to come up with a question on the spot or try to remember what it was they had wanted to discuss with others. Writing makes thinking clearer, for introverts and extroverts alike! An introvert may find it easier to express thoughts verbally after they’ve written them down. You can introduce topics anonymously, and go around the room and give each member a chance to share their experience with the topic in a more comfortable manner.
- Download an interest survey HERE to go over with your group. You can distribute it to your group and send it in to Laurie for tallying. She will get the results back to you, listing your top 5-6 choices to help you plan for future meetings. This form can also be a great idea list for you as are planning for 2019 speakers.
A note from Laurie
Dear Facilitators,
Although it’s still snowing the last few days, I know winter will be ending soon – and time seems to have flown by for me this year! Since I began my role as Director of Group Engagement at WPA last June, I have had the honor of meeting many of the facilitators for both PD support groups and exercise groups. During my visits, I have heard so many inspiring stories of support, strength and determination in managing life with PD. Your genuine compassion for the members of your groups comes through in how you lead group members, and in the respect and concern you show as you facilitate meetings or exercises with their best interests at heart. I am so impressed by the sense of community and camaraderie that has developed among your members!
Changing Lives & Giving Hope
While chatting with group members, I have seen how these meetings and classes have changed lives and given hope where there was none. You have motivated many to take up exercise, encouraged some to become more socially active and inspired others to become more proactive in caring for their health. Many have seen improvement in their symptoms as a direct result of the information and classes you have brought to them! I hope you know that you are truly appreciated for facilitating these groups, and that you realize what a powerful impact you have on the lives of others struggling with PD!
One key factor I have noted in the success of your groups has been your determination to stay connected by reaching out to your group members with reminder emails and calls about upcoming meetings and events, as well as working with various clinics and hospital systems in your areas to promote awareness of your meetings and classes. In addition to creating awareness, making those connections with local medical professionals and community organizations is so important in helping to create speaker options and attain resource materials for your members.
Stories & Photos
Please share pictures of your groups with us! Send them to me at [email protected] or to Carolyn at [email protected]. These pictures can be taken during regular meetings, special moments, important activities, or exercise sessions so that we can continue to highlight you in our magazine, on our website and Facebook page, and in other communications. Sharing these photos is a great way for others to learn more about the amazing things going on in other communities, with groups just like their own – and maybe you will even inspire another group to try something new, or learn from a challenge you and your groups have faced and come out of stronger!
My visits
I visited over 70 support groups and exercise groups in 2018, and if I have not yet had the chance to visit with you and your group members – you’re on my list for this year! Or feel free to contact me to set up a visit. I am excited to learn more about you and your group, and share a little about WPA. I am looking forward to finding even more ways for WPA to support facilitators and the PD community as a whole. We are excited to be expanding resources, programs, and opportunities for all those in our communities who are managing Parkinson disease.
As we move forward into 2019, I would like to thank all of you who have welcomed me so kindly as I came to your groups to present or just do a quick introductory discussion. My role at WPA was created specifically to support you, as facilitators, and your group members, so please contact me when you need resources or assistance. WPA is thankful for each of you, and the unique role you play in supporting the PD community!
Hope to see you soon – thank you for all you do!
-Laurie Couillard
Director of Group Engagement
[email protected] | 414-386-2305
Care Partner Focus
One of the recurring themes we hear from groups is the need for Caregiver resources. WPA is committed to helping the whole family manage Parkinson disease. For example, we recently created a Caregiver Committee to help us better understand the specific needs and resources our care partners are searching for as they help care for and support a loved one with PD.
Here are some updates from our most recent Caregiver Committee meeting:
- The most recent issue of our magazine was a special double issue – featuring both information for people with PD and for Caregiver.
- Caregiver Survey. This survey was included in the magazine as well as emailed. We asked for information on topics of interest, and resources this group needs. See the upcoming issue of the magazine for results.
- Ambassador Program. This committee is helping us design a program to connect care partners with others who can share their experience with common issues faced by caregivers in our PD community. The results of our survey will play a large part in helping the committee move forward to design the topics addressed by the Ambassadors.
- Caregiver resources on our website. This is a resource requested by many of you at our Facilitator Training last June, and we will be establishing this page in 2019. We hope to include an area where facilitators can share resources such as successful speaker options, event and activity ideas and more!
On a similar note, we are working on a WPA Volunteer Program, as many in our PD community have expressed an interest in giving back and helping others. Roles such as helping to assist an facilitator with monthly meetings, filling packets for events, assist at an exercise class, etc. are just some of the roles we have in place for volunteers. Watch for a formal update soon on the WPA Volunteer Program!
Facilitator Feedback: Your Voice Matters!
We need your help! Here are a few ways you can have input as we move forward…
Speaker’s Bureau
WPA knows how difficult it can be to attain qualified speakers for your group, so we are working to build a Speaker’s Bureau! We have many wonderful speaker resources, as you have experienced at our annual Symposium and other education programs, who come to us through our Medical Advisory Committee and other partnerships around the state. Yet we know there is still a great need for speakers in all regions on a variety of topics yet to be addressed, so we are interested in gathering contact information for those we do not currently have on file.
- Help us compile a speakers list! Please send Laurie the name and contact information for 1 or 2 well-received speakers at your group.
- Share interesting topics! Send Laurie ideas on topics your members want to learn more about. We will share the list of topics and speakers in an upcoming newsletter.
Local Resource Directories
One of our goals in supporting the Parkinson community is to provide a list of resources for a variety of needs specific to each county. We are building a directory for each area – and we need your help!
- Share your resources! Share resources about the local organizations you have partnered with for your group’s needs. This could be resources for local durable medical equipment like walkers, or legal assistance information such as wills and estate planning – and everything in between! Send your ideas to Laurie.
Attendance Sheets
Make taking attendance a lot easier! Download an attendance template HERE. This sheet can be helpful for you, and also for WPA! Many of your members have already registered on our website to receive information on WPA happenings like educational programs, current updates and more, but some have not, or don’t have access to email.
- Help your members get involved! Send these completed attendance sheets to Laurie and we will make sure they are getting information and news to help manage their Parkinson’s and other concerns.
How gut bacteria affect PD treatment
Patients with Parkinson’s disease are treated with levodopa, which is converted into dopamine, a neurotransmitter in the brain. In a study published on 18 January in the journal Nature Communications, scientists from the University of Groningen show that gut bacteria can metabolize levodopa into dopamine. As dopamine cannot cross the blood-brain barrier, this makes the medication less effective – even in the presence of inhibitors that should prevent the conversion of levodopa.
‘It is well established that gut bacteria can affect the brain’, explains Assistant Professor in Microbiology Sahar El Aidy, lead investigator of the study. ‘There is a continuous chemical dialogue between gut bacteria and the brain, the so called gut-brain axis.’ El Aidy and her team investigated the ability of gut microbiota to influence the bioavailability of levodopa, a drug used in the treatment of Parkinson’s disease.
The drug is usually taken orally, and the levodopa is absorbed in the small intestine and then transported through the blood stream to the brain. However, decarboxylase enzymes can convert levodopa into dopamine. In contrast to levodopa, dopamine cannot cross the blood-brain barrier, so patients are also given a decarboxylase inhibitor. ‘But the levels of levodopa that will reach the brain vary strongly among Parkinson’s disease patients, and we questioned whether gut microbiota were playing a role in this difference’, says El Aidy.
In bacterial samples from the small intestines of rats, Aidy’s PhD student Sebastiaan van Kessel found activity of the bacterial tyrosine decarboxylase enzyme, which normally converts tyrosine into tyramine, but was found to also convert levodopa into dopamine. ‘We then determined that the source of this decarboxylase was Enterococcus bacteria.’ The researchers also showed that the conversion of levodopa was not inhibited by a high concentration of the amino acid tyrosine, the main substrate of the bacterial tyrosine decarboxylase enzyme.
As Parkinson’s patients are given a decarboxylase inhibitor, the next step was to test the effect of several human decarboxylase inhibitors on the bacterial enzyme. ‘It turned out that, for example, the inhibitor Carbidopa is over 10,000 times more potent in inhibiting the human decarboxylase’, says El Aidy.
These findings led the team to the hypothesis that the presence of bacterial tyrosine decarboxylase would reduce the bioavailability of levodopa in Parkinson’s patients. To confirm this, they tested stool samples from patients who were on a normal or high dose of levodopa. The relative abundance of the bacterial gene encoding for tyrosine decarboxylase correlated with the need for a higher dose of the drug. ‘As these were stool samples, and the levodopa is absorbed in the small intestine, this was not yet solid proof. However, we confirmed our observation by showing that the higher abundance of bacterial enzyme in the small intestines of rats reduced levels of levodopa in the blood stream’, explains El Aidy.
Another important finding in the study is the positive correlation between disease duration and levels of bacterial tyrosine decarboxylase. Some Parkinson’s disease patients develop an overgrowth of small intestinal bacteria including Enterococci due to frequent uptake of proton pump inhibitors, which they use to treat gastrointestinal symptoms associated with the disease. Altogether, these factors result in a vicious circle leading to an increased levodopa/decarboxylase inhibitor dosage requirement in a subset of patients.
El Aidy concludes that the presence of the bacterial tyrosine decarboxylase enzyme can explain why some patients need more frequent dosages of levodopa to treat their motor fluctuations. ‘This is considered to be a problem for Parkinson’s disease patients, because a higher dose will result in dyskinesia, one of the major side effects of levodopa treatment.’
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.
12 of the best domestic tools for people with Parkinson’s
From attachable plate guards to ergonomically designed grabber tools, there are lots of products that make home living that little bit easier. We’ve put together a room-by-room roundup of some of the most useful items for people with Parkinson’s.
Kitchen
1. Plate guard
Plate guards can be subtly fitted onto ordinary plates to help those who can only eat with one hand or have an unsteady grip. The inward facing slopes helps with food collection and prevents spillages.
2. Tailor-made cutlery
Electronic stabilising handles are designed specifically to help people with hand tremors. The utensils are tailor-made to counteract the effect of tremors and have inbuilt sensors and motors to help combat tremors.
3. Kettle pouring stand
Making your morning ‘cuppa’ has never been easier with kettle tippers that helps users pour boiling water without lifting the kettle up – reducing the risk of spills. The frames handily wrap around your kettle, and are held in place with a secure Velcro strap.
Bathroom
4. Foam tubing
Sliding easily over popular household items such as hairbrushes and toothbrushes, foam tubing gives users a firmer grip – making everyday grooming easy and quick.
5. Electric razor
Parkinson’s symptoms like dyskinesia and tremors can make completing everyday tasks like shaving difficult or dangerous. An electric razor is one simple swap that can speed up a morning routine and avoid nips and cuts.
Living Room
6. Grabber tools
Ergonomically designed to mimic how a finger and thumb pick things up, hand grip grabber tools help users reach for things high or low, small or large around the house without stretching or bending.
7. Touch lamps
Touch table lamps help to avoid a struggle with tricky light switches. Simply touch the bases lightly to control the light output and reach the desired brightness, making it that bit easier when settling in for bed.
Bedroom
8. Reading rest
For those who find it hard to keep a book still, consider a reading rest for a more comfortable reading experience. Simply clip the book in and adjust the angle for when in bed or at a desk.
9. Button and zip hook
You can find many easy-to-use, low-cost hooks that help combat fiddly buttons and zips while dressing and undressing.
10. Elastic laces
Get out of the door quicker in the mornings by turning lace-up shoes into slip-ons. Elasticated laces eliminate the need to bend down and tie and untie shoes before leaving the house.
Study
11. RollerMouse
A wireless RollerMouse sits directly in front of the keyboard and the cursor can be moved by touching the rollerbars lightly. Users can switch control between hands when fatigue sets in – improving accuracy and increasing the amount of time spent online in comfort.
12. Keyguards
Keyguards are placed above the keys on a standard keyboard and stop people with hand tremors hitting unwanted keys whilst typing. While it slows down typing speed, it improves accuracy and comfort.
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.
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