Parkinson’s Awareness Posterboards
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.
WPA on The Morning Blend!
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!
WPA Podcast
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!
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.
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]
WPA on The Morning Blend
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!
New Medicare Cards
When you’re enrolled in Medicare, you’ll get your red, white, and blue Medicare card in the mail. If you’re automatically enrolled, you’ll get your red, white, and blue Medicare card in the mail 3 months before your 65th birthday or your 25th month of getting disability benefits. Your Medicare card shows that you have Medicare health insurance. It shows whether you have Part A (Hospital Insurance), Part B (Medical Insurance) or both, and it shows the date your coverage starts.
Be sure to carry your card with you when you’re away from home. Let your doctor, hospital, or other health care provider see your card when you need hospital, medical or other health services.
New Medicare cards are coming
Medicare is mailing new Medicare cards to all people with Medicare now. Find out more about when your card will mail.
View an example of the current card.
10 things to know about your new Medicare card
- Your new card will automatically come to you. You don’t need to do anything as long as your address is up to date. If you need to update your address, visit your mySocial Security account.
- Your new card will have a new Medicare Number that’s unique to you, instead of your Social Security Number. This will help to protect your identity.
- Your Medicare coverage and benefits will stay the same.
- Mailing takes time. Your card may arrive at a different time than your friend’s or neighbor’s.
- Your new card is paper, which is easier for many providers to use and copy.
- Once you get your new Medicare card, destroy your old Medicare card and start using your new card right away.
- If you’re in a Medicare Advantage Plan (like an HMO or PPO), your Medicare Advantage Plan ID card is your main card for Medicare—you should still keep and use it whenever you need care. And, if you have a Medicare drug plan, be sure to keep that card as well. Even if you use one of these other cards, you also may be asked to show your new Medicare card, so keep it with you.
- Doctors, other health care providers and facilities know it’s coming and will ask for your new Medicare card when you need care, so carry it with you.
- Only give your new Medicare Number to doctors, pharmacists, other health care providers, your insurers, or people you trust to work with Medicare on your behalf.
- If you forget your new card, you, your doctor or other health care provider may be able to look up your Medicare Number online.
Deep Brain Stimulation for Parkinson Disease
This article appeared in the Spring 2018 issue of The Network magazine.
Deep brain stimulation (DBS) is an advanced therapy for patients with Parkinson disease (PD) suffering from complications of carbidopa/levodopa treatment. It has been FDA approved for use in PD since 2002 and for tremor prior to that. DBS involves the surgical implantation of a device with electrodes that deliver electrical signals to specific areas within the brain. Once the electrodes are placed, they are then connected to an implanted pulse generator (battery) which is placed under the skin, typically in the chest. When the device is activated, it delivers regular electrical pulses to that area of the brain and results in improvement of PD symptoms. The exact mechanisms of how DBS improves symptoms are not known. However, we do know that it disrupts pathological signals that occur within the brain of PD patients.
Currently, DBS is approved for those patients with a diagnosis of idiopathic PD, who have had symptoms for four or more years and suffer from motor complications that are not controlled with medications. Motor complications refer to the medications not lasting as long (wearing off), levodopa induced dyskinesias (extra, abnormal and involuntary movements) and dose failures.
Individuals who would not benefit from DBS are those with atypical forms of PD, those with signs of dementia and those whose symptoms do not improve with levodopa. Depression and anxiety do not preclude someone from receiving DBS, but these should be addressed, treated and well controlled prior to proceeding.
The process of implanting DBS for patients is a lengthy process. It involves careful pre-surgical screening, two or three surgeries and many follow up programming appointments. The first step is what is called an “Off/On Test.” For this test, the patient comes to an appointment with the neurologist after not taking PD medications from the night before. The patient is then examined in this “Off” medication state. Then, the patient receives a higher than usual dose of carbidopa/levodopa and then re-examined once those take effect.
The next step is to have a formal neuropsychological evaluation performed. This evaluation typically takes about a half of a day and includes extensive testing of memory, language and other cognitive abilities. Once these two preliminary evaluations are complete, most DBS centers hold a multi-disciplinary case conference to discuss these results and the patient’s candidacy for DBS surgery. If there are no contraindications to surgery, the patient will meet with the neurosurgeon who reviews the procedure and the potential risk of surgery. Often times, an additional pre-operative medical evaluation is also required to screen for other medical conditions that could pose additional surgical risks or potential complications. The patient also receives a pre-surgical MRI of the brain to assist with placement of the DBS electrodes.
Most centers perform DBS implantation in two or three individual surgeries. After the DBS device is implanted, the patient then returns to the clinic to turn the device on, typically after three or four weeks. The number of programming appointments needed varies from one patient to the next but can take 6-12 months to reach optimal settings. The battery is checked at routine follow-up appointments and depending on which device is implanted, the battery will need to be replaced from time to time.
Not all symptoms of PD will improve from DBS therapy. The general rule of thumb is if particular symptoms improve after taking carbidopa/levodopa then those symptoms can be expected to improve with DBS. The caveat to this rule are refractory tremors. Tremor in PD can often be resistant to carbidopa/levodopa, but responds well to DBS. In addition, DBS can significantly reduce problems with medication wearing off and dyskinesias. Walking difficulties in PD can be varied and complex. Some of these may respond to DBS but many do not, including balance. Therefore, patients should consult with their DBS physician prior to surgery in regard to their specific walking issues.
Symptoms that are unlikely to improve with DBS are those symptoms that worsen with levodopa, balance, memory problems, speech and swallowing difficulties. DBS can also allow the reduction of some of the PD medications, although it is not realistic to expect to stop all PD related medications after surgery.
It is important to understand that DBS is not a cure however, it is very effective at treating many motor symptoms of PD and improving quality of life.
Ryan T. Brennan, D.O. is an assistant professor in the Department of Neurology at Medical College of Wisconsin.
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