June Newsletter 2018

June 2018
Noblesville

Join IPF on Social Media...
Encourage your friends, family, and neighbors to follow us on social media, so we can inform those in the community about Parkinson's Disease and all of our programs.
Facebook: Indiana Parkinson Foundation
Instagram: @indianaparkinsonfoundation
Twitter: @IN_Parkinson

Volunteers needed: If you have an interest in serving on IPF committees or in classes please contact Jada Aidun at 317-550-5648. We are looking for people who want to give back and get involved by using their skills and talents.

Kroger: Re-enroll with Kroger community rewards for The Indiana Parkinson Foundation they are only good for a year! Call 1-800-KROGERS for more information.

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Important Events:
Knights of Columbus Breakfast for IPF
Sunday June 10th from 8:30 am -12:30 pm
Knights of Columbus
2100 71st Indianapolis

Caregiver Support Group:
June 25th from 11:15am -12:45pm at the Wild Eggs in Fishers. Speaker will be from 1st Home Health Care Agency.
Support Group:
June 27th at LivRite Fitness in Noblesville from 12:15 - 1:15pm. Speaker will be Lona Newton with Senior Living Advisors.

Greenwood Support Groups:
P.D. Support Group every 3^rd Tuesday of the month at 3:00pm. The support group is held at Mt. Pleasant Community Life Center (1^st floor meeting room).

Caregiver Support Group Every 2^nd Saturday of each month at 10:45am. This group is held at Mt. Pleasant Community Life Center (1^st floor meeting room).

Westminster Village North Support Group:
Every month on Tuesday from 2:00 - 3:00 pm and Thursday from 10:00 -11:00 am at Westminster Village North
11045 Presbyterian Dr. Indianapolis (317)823-6841.

SAVE THE DATE:

Our 2018 Choose to Move will take place Saturday September 15th at Witten Park located at 13256 Saxony Blvd. Fishers. There is a 5k run and 1mile fun run/walk.

Make a difference today! Choose to Move has become an important and successful fundraiser for the Indiana Parkinson Foundation. Your support will help us serve more people with Parkinson's Disease.

In addition to registering for the event, you can rally your friends and family by starting your own fundraising team to help us reach our goal. Every donation makes a difference and is fully tax-deductible.

Women with Parkinson’s Disease: Stronger Together
Open to all women interested in learning more about Parkinson's Disease
Saturday July 28th from 9am-4pm.

Hosted in cooperation with PAACI at Northside Knights of Columbus
2100 East 71st Indianapolis. For more information call or email Linda Hinkle 317-374-4201 hinkle.l@sbcglobal.net or Deb Williams 317-698-7539 debslp47@aol.com

PAACI Symposium
When: September 8^th
Where: Northside Knights of Columbus 2100 East 71^st Indianapolis
Contact: Sheri 317-255-1993 skauffman@paaci.org

Come out and be connected with a larger Parkinson community and learn important information at the same time. Dr. Joanne Wojcieszek, movement disorder specialist, will be the keynote speaker.

We would like to thank those in our community who help us with our programs and services: LivRite Fitness, Wild Eggs in Fishers, Blaze Pizza for our dine to donate, and Radiant Life Christian Church for hosting our annual breakfast.

Brain Donations

There is a great shortage of brain tissue for the study of many neurodegenerative disorders, including Parkinson’s disease (PD). Donations give researchers an opportunity to better understand these neurodegenerative disorders and provide insights on improving treatments and medications.

When should I (or a family member) volunteer to donate? Deciding to be a brain donor can be difficult. It often helps to seek guidance from loved ones. Talk with your family about your intent to donate, make a living will and tell your physician your wishes. It is important to enroll with an organization in advance. Some brain banks will not accept a donation unless they already know the person’s wishes and have medical records, and this can take time. Forms will need to be filled out by you or the attending physician.

What is the process after end of life? A family member or primary care physician will need to call the chosen organization’s 24-hour telephone number to notify them of the passing. This must take place immediately. Some organizations require brain donations to take place within 12 hours of time of death, while some allow donations within 24 hours. Make sure you know the policy of your chosen organization in advance to avoid any delays.

Frequently Asked Questions

Q: Does donating brain tissue delay funeral arrangements?

A: Brain donation will not interfere with funeral arrangements, and the person may have an open casket viewing.

Q: As an organ donor, isn’t my brain included?

A: Brain donation is not included if you are an organ donor. You need to sign up for brain donation separately.

Q: Do I have to pay to donate?

A: Most organizations assume financial responsibility for transporting the brain tissue to a pathologist. Funeral expenses still need to be covered by the family.

Q: Can anyone donate?

A: There are two reasons a brain may not be accepted: if the person passed away from a certain infectious disease or if the person was on a respirator prior to death.

Q: Can I change my mind?

A: Brain donation is a personal choice. You may opt out at any time by notifying the organization you signed up with.

Q: How can I find out which organizations accept brain tissue?

A: Call the Parkinson’s Foundation Helpline at 1-800-4PD-INFO (473-4636) for a list of organizations that accept brain tissue and their program information. The Brain Support Network can also help walk you through the process and arrange donation: www.brainsupportnetwork.org.

The National Institutes of Health NeuroBioBank (www.neurobiobank.nih.gov) collaborates with six brain banks who collect tissue and then allow scientists to request samples to support their research studies. You may donate to the NeuroBioBank by signing up with the Brain Donor Project.

Learn more at www.braindonorproject.org.

Books to Read

Brain Storms: The Race to Unlock the Mysteries of Parkinson's Disease by Jon Palfreman
Caregiving for Parkinson's Disease by: Lianna Marie
Goodbye Parkinson's, Hello Life!: The Gryo/Ekinetic Method for Eliminating Symptoms and Reclaiming Your Good Health by Alex Kerten and David Brinn

Medical News:

Lingraphica is a technology company dedicated to helping adults with communication disorders improve communicate skills. Nearly 30 years ago, the company started working with adults with aphasia, a communication and language disorder often caused by a stroke or traumatic brain injury. However, the tools it develops are also used effectively in managing many other communication disorders, including those associated with PD. Lingraphica, however, is best known for its communication devices. A communication device is a laptop or tablet computer that uses specialized software to help people find their voices again. If you are interested in trying a Lingraphica communication device for free, give us a call at 888-274-2742. We’ll work with you, your speech therapist, and your doctor to ensure you have the support and tools to communicate again. For more information about Lingraphica's devices and speech therapy tools, visit www.communicateagain.com.

Topic: Aware in Care Kits

National Parkinson Foundation

The Parkinson’s Foundation launched the Aware in Care campaign in 2011 to help people with Parkinson’s disease (PD) get the best care possible during a hospital stay. According to a recent study, three out of four people with Parkinson’s do not receive medications on time when staying in the hospital. With more frequent hospital visits and a high sensitivity to the timing and dosing of PD medications, people with Parkinson’s face great risks in the hospital.

To protect, prepare and empower people with Parkinson’s before, during and after a hospital visit, we developed the free Aware in Care kit with tools and information to share with hospital staff during a planned or emergency hospital visit.

Aware in Care kits can be requested from your local Parkinson’s Foundation Chapter or Center of Excellence. If you do not live in an area with a Chapter or center, you can order a kit online.

Call 1-800-4PD-INFO (800-473-4636)

What’s in the Kit?

1. Bag: Pack the bag with your Parkinson’s medication and Aware in Care materials.

2. Hospital Action Plan: Read about how to prepare for your next hospital visit, whether it is planned or an emergency.

3. Parkinson’s Disease ID Bracelet: Wear your bracelet at all times in case you are in an emergency situation and cannot communicate.

4. Medical Alert Card: Fill in the card with emergency contact information, and put it in your wallet.

5. Medication Form: Complete this form and keep copies in the bag.

6. Parkinson’s Disease Fact Sheet: Share the facts about Parkinson’s with hospital staff, and ask that a copy be placed in your chart.

7. I Have Parkinson’s Reminder Slips: Share vital information about Parkinson’s disease with every member of your care team in the hospital.

8. Magnet: Use this magnet to display a copy of your Medication Form in your room.

The Kit also comes with a medical alert card, for those with Parkinsons. If you are not interested in the kit, follow this link to print your own medical alert card. http://parkinson.org/sites/default/files/Medical_Alert_Card_0.pdf

To get other important medical documents visit this link to view a power point with the documents.

http://parkinson.org/sites/default/files/2015_Aware-in-Care-Overview.pdf

Caregiver's Retreat

Are you a caregiver? Would you like to take a break and learn about topics relevant to caregiving and taking care of yourself?

Joy’s House would love to have you join the 2018 Spring Caregiver Retreat. We will even help you sneak in a massage. There is no charge, and you do not have to have a loved one attending Joy’s House – this is our gift to all caregivers in the community!

All attendees will enjoy snacks, massages, special exhibits, information, guest speakers, fellowship and more.

In addition, complimentary Adult Day Services are available at both Joy’s House locations (space is limited). If your loved one is not already in attendance at Joy’s House, we will need to capture basic medical information for us to best care for your loved one at Joy’s House during the retreat.

Our next retreat is June 23rd, 2018 from 9 a.m. – 12 p.m. at Calvary Lutheran Church (6111 Shelby Street, Indianapolis). Mark your calendars and let Candace Preston know if you are interested in attending.

Additional dates for 2018 A Day Away Caregiver Retreats:

August 25 at Copper Trace Senior Living Community

LSVT

Seminar

LSVT Global invites you to a FREE, one-hour presentation on the effective, evidence based LSVT BIG treatment program on Sunday June 24, 2018. Following this educational lecture, we invite individuals with PD to try the LSVT BIG exercises with physical and occupational therapists who are attending our LSVT BIG Training and Certification Course this same weekend. Please wear comfortable clothing and shoes to the event. People with PD, family members, friends, caregivers, and other health care professionals are all welcome to attend the presentation!

When: Sunday June 24th from 12:00 – 1:00 p.m. Lecture and refreshments and 1:00 – 2:00 p.m. interactive exercise practice time .

Where: Franciscan Health Crown Point Marion Education Center, Rooms A-D 1201 South Main Street Crown Point, IN 46307

RSVP: Please RSVP and all questions to LSVT Global at: Toll Free: Direct: Fax: Email: 888.438.5788 520.867.8838 520.867.8839 info@LSVTGlobal.com

This seminar is offered FREE of CHARGE. Registration is limited!

What is LSVT:
The Lee Silverman Voice Treatment – LOUD (LSVT LOUD) is a treatment for speech disorders associated with Parkinson's disease (PD).

LSVT LOUD improves vocal loudness by stimulating the muscles of the voice box (larynx) and speech mechanism through a systematic hierarchy of exercises. Focused on a single goal “speak LOUD!” – the treatment improves respiratory, laryngeal and articulatory function to maximize speech intelligibility.

Specifically, training increased amplitude of limb and body movement (Bigness) in people with Parkinson disease has documented improvements in amplitude (trunk rotation/gait) that generalized to improved speed (upper/lower limbs), balance, and quality of life. In addition, people were able to maintain these improvements when challenged with a dual task.

LSVT is Covered by health insurance, and is usually 16 sessions over a 4 week period. To find a clinician near you call or email Jada for more information (317) 550-5648 / jada@indianaparkinson.org

Websites to check out:

Clinical Trials: www.clinicaltrials.gov

Lewy Body Dementia: www.lbda.org

Cure PSP: www.psp.org Progressive supranuclear palsy which is often diagnosed as PD.

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