In addition to TV, RADIO, PODCASTS, we also had BILLBOARDS around southeastern Wisconsin, and POSTERBOARDS at 34 gyms, clinics and YMCAs across the state!
We also received official proclamations declaring April as Parkinson Awareness Month from Governor Evers, and the mayors of Milwaukee, Madison, La Cross, Wausau and Appleton.
Jeremy Otte, director of outreach & education, and Dale Luedtke, a musician with Parkinson disease, were featured on The Morning Blend, a morning talk show on TMJ4 Milwaukee. Check it out!
This column appeared in Parkinson’s News Today.
I went to the dermatologist yesterday for a skin check. Those of us who have Parkinson’s disease (PD) should make a habit of getting a yearly check because our condition increases the odds of getting skin cancer. The Mayo Clinic reported that patients with Parkinson’s “were roughly four times likelier to have had a history of melanoma than those without Parkinson’s, and people with melanoma had a fourfold higher risk of developing Parkinson’s.”
So, I had an appointment with the dermatologist. After a thorough body check and five biopsies, I was free to leave. The nurse stayed back with me after the doctor left because I struggled to move. She asked when I was diagnosed with Parkinson’s. After I answered “2004,” she replied, “Isn’t that young for Parkinson’s?” Not as young as when the symptoms began 10 years before that, I wanted to answer.
She followed that question with another: “Did it run in my family?”
No.
“Not even one relative?”
No.
“Are you sure?”
Yes.
While I dressed and walked out to where my husband waited in the car, I shook terribly. That’s something I hadn’t done in quite a while. I was sure it was the combination of numbing five different areas with an intrusive needle and the anxious feeling that came over me with the news that spots could be cancerous. However, what caught me almost more off guard was the nurse’s questioning.
I have spoken to groups about my 20-year journey with Parkinson’s disease. I write about it on my blog. I am open about it with others. I have written articles for several different publications. I am a PD advocate. I know a lot about the disease. I just figure others do, too. What surprised me most about her questions was that she worked for a dermatologist who should be very familiar with PD since the disease can highly affect the skin.
As long as we live with PD, we are responsible for getting information about this disease out to everyone we can, as best we can. Not just to newbies in the patient club, but also those in the medical fields. Perhaps the patients and caregivers should hold a conference for medical professionals instead of the opposite. After all, we are living PD day to day, feeling it moment by moment. As my movement disability specialist once told me, “You patients are the experts. The doctors take their cue from you.”
If that is true then we need to be proactive with the hand we’re dealt. We must educate those around us, whether they’re a patient, nurse, caregiver, doctor, dental hygienist, or medical transporter. It’s going to take a whole lot more than answering the question of whether Parkinson’s disease is hereditary — it was obvious to me the nurse wasn’t buying my answers.
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!
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.
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]
Ciara Clancy is no ordinary entrepreneur, with her company Beats Medical far less concerned with making money than it is with helping people live with various neurological conditions.
At the age of just 29, Ciara Clancy’s work in helping people to live with the likes of Parkinson’s disease, Alzheimer’s, dyspraxia and the effects of stroke are unparalleled on the island of Ireland.
Speaking to host Tadhg Enright on this week’s The Architects of Business, in partnership with EY Entrepreneur Of The Year™, Ciara reveals the reason why she left behind her career as a physiotherapist.
A highly driven and passionate individual, Ciara wanted to create technology – based on Metronome Therapy, which helps Parkinson’s sufferers in particular – that would make it as easy for those living with these life-changing conditions to get around at home as it would be under medical supervision.
“I remember the exact moment that I decided I wanted to found Beats Medical,” Ciara – a 2016 finalist in the EY Entrepreneur Of The Year™ programme – reveals.
“A person with Parkinson’s disease was coming into me for this Metronome Therapy in a hospital, and he was 20 minutes late and I went out to find him stuck, frozen at the main entrance.
“And this was happening everywhere we went, every door he went through, and I knew that when he came into clinic he walked very well with Metronome Therapy but he’d go home and this would persist, and it was at that point I said I can’t go 20 years into my career and not try. I need to find a way to bring this treatment into the home.
“That’s when I decided to step out of my career as a physio and volunteer with a Parkinson’s charity to understand needs outside of the hospital. And really that’s how Beats Medical was born.”
Jeremy Otte, our director of outreach & education, and board member Ron Mohorek were on the The Morning Blend on TMJ4 this morning talking about Parkinson’s and our upcoming Symposium!
Thanks to Amada Senior Care for including us!
Four years ago, Joe & Patty Schlicher took over a community golf outing that had been held for many years to support WPA. Together with their friends and family, they have held the “Movers & Shakers Classic” golf outing in Elkhorn as a way to raise awareness and money for WPA.
Joe & Patty’s support is evident through their work year-round, not just at the golf outing. They were instrumental in starting a Rock Steady Boxing class at the Geneva Lakes Family YMCA, and they started a support group for people with PD and caregivers in conjunction with the Boxing class. Patty also joined WPA’s newly formed Caregiver Committee to help us expand our programming.
Joe & Patty were surprised with the Tulip Award at the Movers & Shakers Classic on June 2. The award recognizes a worthy individual, couple, or family who have shown dedication and a commitment toward helping people with PD and educating the public about PD.
We are so grateful to Joe & Patty for the work they have done to promote hope, community, support, and resources for people with PD and their loved ones!
In the 1970s, Golfer Cherie Zaun was on her way toward a promising career, and put her career on hold to raise two children. In the 1990s, with her children grown, Cherie decided to follow her dream: to compete at the highest level in golf. With a lot of hard work and dedication Cherie earned her way to the LPGA tour. She competed in over 30 tournaments and practiced week after week to improve her play. Struggling with her game, she began to realize that something was not quite right with her body. She tried to remain strong and work through it, only to have her symptoms get worse.
In 2003, determined to figure out what was going on with her body, Cherie left the tour, and was diagnosed with Parkinson disease. Symptoms of Parkinson disease can include tremor, slowness of movement, rigidity, problems with balance, and more. While Parkinson’s can be managed with exercise and medication, it is chronic and progressive and has no cure.
Cherie chose to get involved with many organizations and events that promote living well with Parkinson disease. The LPGA tour lost a very talented player, but the Parkinson world gained a great spokesperson. Cherie wants to be a part of the journey to find a cure for Parkinson’s in her lifetime. She now travels around the country speaking and appearing at charity golf outings — including the Movers & Shakers Classic on Saturday, June 2 at Evergreen Golf Course in Elkhorn, Wisconsin.
Coordinated by Joe & Patti Schlicher, the Movers & Shakers Golf Classic includes a golf outing, live and silent auctions, raffle, and a dinner for golfers, family members, and the community. Cherie will be a part of the day, and will be sharing her story at dinner. All proceeds from the event benefit Wisconsin Parkinson Association, which provides hope, community, support and resources for people with Parkinson’s and their loved ones.
“We are so honored the Movers & Shakers Classic has again chosen to support WPA,” said Gary Garland, executive director of Wisconsin Parkinson Association. “This annual event has raised over $35,000 that assists support and exercise groups and educational programs around the state. Cherie’s presence will be a great addition this year!”
Cost to participate in the golf outing (including dinner) is $96/golfer. The dinner only option is available for $24 (for a hamburger or brat) or $32 (for steak or chicken). To participate or to donate money or an item for the auction, contact Joe Schlicher at 262-949-8011.
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