Register now for the 2018 Choose to Move! Choose to Move to beat Parkinson's DiseaseChoose to Move is an important fundraiser for the Indiana Parkinson Foundation. Your support will help us serve more people with Parkinson's Disease through our CLIMB exercise program and other initiatives. We look forward to seeing you at this year's CTM race!
SUPPORT GROUPS
Caregiver Support Group:
August 27th, at the Wild Eggs in Fishers. This will be an open discussion meeting held from 11:15am-12:45pm.Support Group:August 22nd at LivRite Fitness in Noblesville from 12:15pm-1:15. This meeting will be led by Colleen Card from Right at Home.
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.
NOH and Parkinson DiseaseAugust 16th 2018
9:00am-11:00am
Community Health Pavilion at 9669 E. 146th St. Suite 160
Noblesville, IN 46060
Come out and enjoy a light breakfast and learn about the different aspects of Parkinson's Disease.
Call 317/550-5648 to RSVP
Partners events:PAACI Symposium When: September 8
thWhere: Northside Knights of Columbus 2100 East 71
st Indianapolis
Contact: Sheri 317-255-1993
skauffman@paaci.org Come out and get connected with a larger Parkinson's community and learn more about Parkinson's disease.
Dr. Joanne Wojcieszek, movement disorder specialist, will be the keynote speaker.
Metro Indy Lewy Body Dementia Support Group When: 2nd Thursday each month, from 2-3:30 p.m.
Who: Caregivers of those with LBD *Come a half hour early for a late lunch and socializing*
Location: Amore Pizzeria
Address: 41 Boone Village Zionville, IN
Contact::Mary Milberger at 601-909-LEWY (5399) or at MetroIndyLewy1@gmail.com
Stepping On Falls Prevention Class Starting August 2, 2018
Every Thursday, 2-4pm, through Sept. 13
3125 Scatterfield Rd, 3
rd Floor Community Room
Anderson, IN 46011
Contact Community Hospital Anderson at 298 -1681 for more information and to sign up.
Joy's House Caregiver's retreatOur next retreat is August 25th, 2018 from 9 a.m. – 12 p.m. at Copper Trace Senior Living Community. Mark your calendars and let
Candace Preston know if you are interested in attending at 317/254-0828. 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!
We would like to thank those in our community who help us with our programs and services: LivRite Fitness, Wild Eggs in Fishers, Prime Car wash, Ginger'sCafe, and Katresha Taylor from Kindred Hospice. We would also like to thank Joy Gordon for many years of serving those with Parkinson's disease. We will miss you!
Research News
The Parkinson’s Clinical Research Fair:
Individuals with Parkinson’s, their families and friends
MJFF’s Cleveland Clinical Research Fair
Saturday, August 11th from 9am to 1:30pm
Embassy Suites by Hilton Cleveland Rockside, 5800 Rockside Woods Blvd. Independence, OH 44131
RSVP by: August 18th to 800-708-7644
This event will feature an expert panel presentation on clinical research and highlight resources to learn more about participation. This is a free event.
There will be a number of opportunities to meet with leading doctors and scientists in the field of PD research and find out how you can play a part in getting to a cure.
BOOKS TO READ
Comprehensive Nursing Care for Parkinson’s Disease,
Bunting-Perry, L. K. & Vernon, G.M., ISBN: 0826102379
American Association of Neuroscience Nurses,
AANN Core Curriculum for
Neuroscience Nursing, Fifth Edition, ISBN: 9780983132
Deep Brain Stimulation Management,
2nd Edition, Edited by William J. Marks,Jr. ISBN: 1107084253
Need help improving your voice or swallowing?
The EMST150™ is the most scientifically tested, clinically proven, handheld expiratory muscle strength trainer available! Designed by a well-respected team of researchers, the one of kind EMST150™ device now has over a decade worth of evidence-based outcomes. The EMST150™ research team and scientists worldwide know that the simple use of the EMST150™ over a short period of time results in an unquestionable improvement in breathing force while improving the strength of cough, swallow and voice. In trial after trial, the EMST150™ training system has shown significant improvements in the strength of healthy individuals, and individuals diagnosed with neurological/neurogenic diseases such as Parkinson’s disease, stroke, multiple sclerosis, ALS, and spinal cord injury.
The EMST150™’s design uses a unique, calibrated pressure relief valve that creates an isometric load to the muscles used for coughing, swallowing and breathing out. This is similar to the experience that occurs when you lift weights to strengthen muscles in other parts of your body. It uses the same principle as the weight machines in the gym.
The EMST150™ can be carried with you anywhere, and used anytime to improve and maintain your muscle strength even after you complete your training. And it’s calibrated so you can measure your progress over time! The calibration on the EMST150™ is adjustable from 0-150cm H20, allowing for a safe and full range of use as the breathing, swallow cough and voice strength increases during your training program. Not only that, but the calibration features allows you to accurately measure progress over time.
ph: 800.596.7220
Can be ordered off of Amazon.com
or at www.emst150.com
Caregiving Tips for Caregivers of Parkinson’s If you take care of a loved one with Parkinson’s, what does a typical day look like for you? That question may be hard to answer, as any given day likely changes along with your loved one’s unpredictable symptoms and a rotating schedule of doctor’s appointments, exercise classes and more.
We’ve compiled a list of practical tips for caregivers of patients with Parkinson’s disease to hopefully make their lives easier and to help ease the stress. We’ve based our advice on information from the
Michael J Fox Foundation and
Partners in Parkinson’s.
- Be organized:
- Keep all of your loved one’s medical notes, insurance, records, appointments, telephone numbers of clinics and doctors, and medication details in a folder that can be easily accessed at any time. Take this folder with you to all appointments so you always have everything on hand.
- Look after yourself:
- In order to be able to look after your loved one, you need to be physically and emotionally well. Take time off–it’s important to unwind and de-stress. Ask other family members and friends to help out or look into hiring professional care. Spend some time doing something you enjoy and take your mind off things for a few hours.
- . Understand the medical insurance:
- Make sure you fully understand your loved one’s medical insurance policy — what it does and doesn’t cover and how to apply for reimbursements of medical costs.
- Join a support group:
- Find out if there are any active support groups in your local area. If not, then look online for a support group for caregivers of Parkinson’s disease patients. This will give you both practical and emotional support, and you will be able to ask advice and share your experience with others who are going through the same thing.
- Educate yourself about Parkinson’s disease:
- Expect changes in the relationship:
- Mood swings and depression are common in Parkinson’s disease and your loved one may even become resentful. It’s difficult to deal with these changes in the relationship, so open and honest communication is critical. You will both need time to adjust to your new roles in the relationship.
- Observe symptoms and report any changes:
- As your loved one’s career, you will probably be the first person to notice any changes in behavior or worsening of symptoms. Report these to your loved one’s doctors as they occur so they can be addressed as soon as possible.
- Encourage independence:
- Try not to do too much for your loved one, they will want to hold onto their independence for as long as possible. Ask if they need help and respect their answer.
- Know your rights:
- Familiarize yourself with both caregivers’ rights and disability rights. Find out if you are entitled to any disability or career’s benefits.
- Talk about the future:
- Although this is a difficult topic to broach, it’s important that you understand what your loved one wants further down the line. You need to discuss wills, treatment options and end-of-life decisions.
Source: Micheal J Fox website, and Partners in Parkinson and caregiver’s allianc
What is a Physical Therapist ,Occupational Therapist and a Speech Therapist? Physical Therapist: A Physical Therapist is a licensed health professional. They help patients reduce pain, stiffness and improve mobility – Physical Therapist also
work with individuals to prevent the loss of mobility before it occurs. Their job is to work with all the gross motor symptoms of a patient.
PT is important with Parkinson disease as they can work with the individuals on many things including dystonia, freezing, balance, lack of coordination and gait issues.
Physical therapist can work with the individual to develop specific plans for improving strength, flexibility, getting in and out of bed, cars, chairs and to the bathroom. Additionally, strengthening postural muscles may help to maintain a more upright posture.
Occupational Therapist: An Occupational Therapist is a licensed health professional that help patients work on their small motor skills. Occupational therapy is about helping people do the day-to-day tasks that "occupy" their time,
They work with all aspects of life, including daily living, getting dressed, grooming, bathing, eating, cooking, memory loss, dexterity and such. They are able to recommend or help get with many adaptive devices needed to make daily living easer for all sorts of home modifications.
Occupational therapists are often instrumental in assessing for individual for the appropriate wheelchairs for the elderly.
In addition, an occupational therapist that specialized in specific training in driver rehabilitation can assess an individual's ability to drive using both in a clinical setting and on-the-road tests. These evaluations will allow the therapist to make recommendations on whether an individual should remain behind the wheel of a car of not. This takes the stress off of the family members, as an independent person is making the assessment and recommendations.
Speech Therapist: Speech Pathologist are licensed and work with people who have problems with speech, language, thinking, swallowing and cognitive changes. Which individuals with Parkinson disease will face at some point in their disease.
Early intervention is best to keeping and improving communication and swallow function. As soon as you or caregiver notice any changes in speech, swallowing or memory/ cognition, it is time to seek help. Start seeing a speech-language pathologist as soon as possible, as it is far easier to learn new strategies and techniques, then to try to regain what has already been lost.
All three health care professionals should be a significant part of a PD patients care, as they can greatly assist individuals with PD maintain their usual and current activities for as long as possible. Many OT and PT therapist can complete special certifications related to treating Parkinson disease, Like LSVT BIG and PWR. While Speech Therapist cane complete LSVT LOUD and Speech Vive. While all therapist have knowledge of Parkinson disease and how it is treated and managed, therapist with these special certifications cam provide more in depth treatment and care. Although the therapist cannot cure Parkinson disease, they can help you deal with the many factors of living with Parkinson disease. Early intervention is always best.
Source: national PD, APDA, Web MD