May Newsletter 2018

May 2018
Noblesville

Join IPF on Social Media...
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.

Tulips: Spring is coming! 12 tulip bulbs for $10 all money goes to The Indiana Parkinson Foundation. Contact Jada@indianaparkinson.org if you’re interested.

Books to Read: Journey begins with 1,000 miles by: John Alexander a member of the Parkinson’s Community, thriving with Parkinson’s Disease through Hope, Optimism, and Perseverance. The book is available on Amazon.

Announcement: If you are benefiting from one of our scholarships and are not attending the classes that we have, we kindly ask you to let us know and we can redirect the scholarship fund to someone who regularly attends.

Important dates:
Breakfast to benefit IPF: May 19^th, 2018 @ Radiant Christian Church 16162 Carey Rd Westfield, IN 46074. Doors will open at 8am and breakfast will be served at 8:30am. Tickets are $10.

No Caregiver Support Group due to Memorial Day.

Support Group:
May 23rd @ LivRite Gym at 12:15 - 1:00 pm
Closed on Memorial Day: The Climb will be closed on May 28th for Memorial day.
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 also held at Mt. Pleasant Community Life Center (1^st floor meeting room).

Westminster Village North Support Group:
Every month on Tuesday @ 2:00 - 3:00 pm and Thursday @ 10:00 -11:00 am
Westminster Village North
11050 Presbyterian Dr. Indianapolis, Indiana 46236 (317) 823-6841.

SAVE THE DATE: The 2018 Choose to Move will take place September 15th. Please mark your calendars and spread the word. More information will be available on our website in the near future.

We would like to thank those in our community who help us with our programs and services: LivRite Fitness, The Wild Egg in Fishers, Oscar Casas and Julie McGuire with Dancing for Parkinson's, Mary Beth Campbell with Southern Care Hospice, Community Health Pavilion, The Noblesville Times Newspaper, Colleen Card with Right at Home, and City BBQ.

Early Signs of Parkinson’s All Levels
By : Kelsey McClymonds

Ten early signs of Parkinson’s disease include:
Tremor.
Small Handwriting.
Loss of Smell.
Trouble Sleeping.
Trouble Moving or Walking.
Constipation.
A Soft or Low Voice.
Masked Face.
Dizziness or Fainting.
Stooping or Hunching Over.

Loss of Sense of Smell

An often overlooked but important symptom that develops along with Parkinson’s disease is the loss of sense of smell. This symptom is important because of how early it may develop. For many people who suffer from Parkinson’s disease their sense of smell loss occurred up to 10 years before they were diagnosed or their motor symptoms developed. Although many ailments cause a loss of sense of smell, most people suffering from Parkinson’s disease experience this symptom. The loss of smell that Parkinson’s patients experience is called hyposmia.Unfortunately there has been no medication found or developed to treat hyposmia or regain any previous loss of sense of smell. The only form of treatment that has been seen in research studies has been deep brain stimulation. People who have received deep brain stimulation have shown slight improvements in their sense of smell because the procedure stimulates the cognitive processing of information which includes information that has to do with smell.

The detection of this loss of sense of smell has become very important to PD research. This is due to new questions arising about the true initial location of PD development in the brain. Right now most neurologists have a general consensus that PD develops in the substantia nigra when a significant amount of dopamine producing cells die. However, new research is starting to question this theory. Some neurologists have been starting to hypothesize that PD’s true initial point is in the gastrointestinal system and the olfactory bulb. This hypothesis further explains why PD patients experience a loss of smell and why it happens before the motor symptoms develop.This hypothesis has the potential to make a break in PD treatment because if this hypothesis is shown to be true doctors could be able to locate the alpha-synuclein clumps that are found in many PD patients and break them up before they reach the brain and major damage occurs.

Topic: Parkinson’s Disease Psychosis: The Symptom No One Wants to Talk About

By: Tracy Line

Years ago my mother told me a secret. One night my father had woken up and heard people talking in the living room. He got up to investigate and moments later Mom followed. There was no one there. Dad was sure he’d seen three people and Mom was sure he was losing his mind. Because he was at the beginning stages of dementia, my mother and I wrote the incident off as confusion. We told no one about it.

Long after mom was gone, Dad would go on to have many more hallucinations (seeing, hearing or sensing things that were not there) and eventually experienced delusions as well (beliefs not based in reality). These incidences scared me, primarily because I did not know about Parkinson’s psychosis. Call me ignorant if you want, but I had done my homework. I’d read books on Parkinson’s, researched Internet articles and attended his doctor visits. Most of the literature on the Parkinson’s disease focuses on the physical symptoms. Yet the non-motor symptoms are just as demoralizing. Finally I came across a book that said some people with Parkinson’s experience hallucinations. There was just one sentence with no further details.

Some topics, like psychosis, are hard to discuss. People who have hallucinations are afraid of what they saw. Their loved ones fear what is happening. Yet understanding that it’s a part of the disease and knowing what it looks like can disarm fear. No longer do I panic when Dad points to the critters he sees running around his room. I’m no longer horrified when he tells me he witnessed a shooting or asks about my daughter's recovery from surgery (she’s not had surgery). Instead I focus on making sure Dad is not afraid of whatever he thinks has happened.

Sometimes changes in medications can help alleviate or reduce Parkinson’s psychosis. Unfortunately this has not been the case for my father. Is it hard to hear Dad talk about imaginary things? Yes. It makes me sad. But at least now I know it’s just one of the many devastating symptoms of Parkinson’s disease, and that there are ways to manage it.

________________________

Tracy Line

317.414.3840
Speaker/Author of Chasing God
www.tracyline.com

Topic of the month:

Adaptive Resources

Check out “The Wright Stuff", a catalog of items that are made to support those with a disability. This catalog has anything you can think of including items for the kitchen, hygiene products, household aids, on the move accessories, and exercise items, all specially crafted to help you.

Adaptive clothing can provide much relief for those in need, but its use requires some additional thought and planning that we may not even consider when dressing ourselves. The following companies have Adaptive Clothing that can be very helpful: Tommy Hilfiger, Magna Ready Clothing, OXO Good Grop Buttons, Target, Silverts, and Zappos.

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

Medical News and Trials: Speech Vive

Speech Vive is a wearable prosthetic that leverages your automatic response to be loud. SpeechVive uses the “Lombard Effect,” which is our natural response to speak louder and more clearly when communicating in a loud environment, automatically triggering you to speak louder and more clearly.

The Cost of SpeechVive is $2,495 Check out the website www.speechvive.com for financing options.

Give