Parkinson's Awareness Month
MSQLP's e-newsletter: April 2015 edition
Letter from a Board Member
By Helen Zilinskas - MSQLP Board Member

I think of my father often but April being Parkinson's Disease Awareness Month makes some memories more vivid. 

My father grew up on a farm in northern Europe, and, like many children at that time had to start working at a very early age. I remember the stories of hardship but also of good times.

By the time I was born, he had left the farm and embarked on a career as a master builder. I was the youngest child and as such we had a very special bond. One of the things I remember most clearly is that my father was very interested in politics and international affairs and we would sit and watch the news on TV together every evening.  That's when I first started noticing the tremors and the "pill rolling". I obviously didn't know what that was about at the time but I was very aware that it was happening.

My father requested a medical evaluation for these symptoms on a few occasions up but was told "You have done hard physical labor for a major part of your life; these kinds of issues are to be expected". It wasn't until my parents retired, moved and he went for a routine checkup that a physician said "Sir, has anyone told you that you may have Parkinson's Disease?".

As devastating as the diagnosis was for him and for all of his family and friends, there was also a sense of relief-of now we know and now we can move forward. 

This is not to say that things suddenly became easy. There were good years, for example, my father was able to realize some of his dreams of travel.  I am so glad that he was able to visit me in the US.  He saw California, New York and the Washington DC area with all its rich history. He took in as much as he could-I remember him standing in line for hours to visit the White House and walking around the National Mall and all the other major sites. My father talked about his US trip for years afterwards!

Then there were harder times.  His motor symptoms worsened and he began having problems with cognition as well as suffering from delusions. My siblings and I would provide respite care as often as we could to give my mother a break. Sadly, sometimes I wasn't sure that my father knew who I was when I was caring for him.  How very frightening that must have been for him. 

At the same time, my father and I still had fun and meaningful conversations. He was always ready to tell amusing stories from his past and always made me laugh.  More importantly, on what turned out to be the last time we saw each other, we sat side by side and watched the news as we did when I was growing up. Suddenly he turned to me and said "I'm not sure I've been such a great father to you" and I replied "You've been the best father I could have asked for".  He died a few months later.

Are there lessons in my father's experience? I think there are some. Advocate for yourself and others. Don't take "no" for an answer and get the best medical care you can. Live life to the fullest -live your dreams. Take care of your loved ones and tell them how important they are to your life.

I am very pleased and honored to have been elected to the Board of MSQLP and look forward to contributing to the very important work done by the organization. I also look forward to meeting with as many of you as possible at future MSQLP events.

Sincerely,

 

Helen Zilinskas, MPH

MSQLP Board of Directors

Upcoming Events 
(click orange text for more event info or flyer)

 

MSQLP's forum: Medical Marijuana for MS and Parkinson's

Saturday, April 11th
3PM to 5PM
Monterey Library - Community Room
Featured speaker: Dr. Deborah Malka from Cannabis Plus

 

Call the MSQLP office to register for this event: 831-333-9091 

 

Tuesday, April 14th

3PM to 4:30PM
Sally Griffin Center- Pacific Grove 

Phone: 831-372-7510

 

MS Event Series w/ Dr. Banks Sponsored by TEVA Neuroscience

Wednesday, April 15th
12PM to 1:30PM
Elli's American Restaurant- Salinas

1250 S. Main Street 

 

Michael J. Fox Foundation Parkinson's Webinar

Thursday, April 23rd

Begins at 9AM PST

Click the webinar title to register for this event.

 

Sunday, April 26th

9AM to 12PM
Registration opens at 8AM
Lover's Point Park - Pacific Grove

 

MSQLP Support Groups
Salinas MS Support Group
Friday, April 17th
11AM to 1PM
Salinas Valley Memorial Hospital
-Downing Resource Center Room A

Monterey MS Support Group
Saturday, April 18th
11AM to 1PM 
MSQLP Office - 519B Hartnell St.

The topic for both support groups will be dealing with difficult emotions.

Water Aerobics Program
Mondays & Wednesdays 
12-1pm @ Monterey Sports Center

This program is offered free to families living with MS or Parkinson's.
MSQLP's NEW
            Equipment Library

By Grant Helm - MSQLP Executive Director/Client Services Supervisor

 

Towards the end of March MSQLP was awarded an Opportunity Grant by the Community Foundation for Monterey County to fully fund the launch of our brand new Equipment Reuse Program.

 

For many years, MSQLP has tried to assist clients in donating or receiving used mobility equipment. However, due to the limited amount of space we have in our small office, we were never able to facilitate large devices like scooters or powerchairs.

 

But now, with the launch of our Equipment Reuse Program we will be using a storage facility in Monterey to store as many functional mobility devices or adaptive equipment that it can hold. The purpose of this new program is to provide donated equipment to individuals living with MS or PD that are in need of a device.

 

From now on, we will be posting pictures and details of equipment that has been donated to MSQLP. All equipment that we store is functional and available for use.

 

Below is a list of available mobility devices and equipment for loan:

 

 

Click to enlarge.
  
Medium size 3-wheeled Scooter

Brand: GoGo Ultra X

Details: comes with charger, extra battery, attachable arms for chair, and device manual.

 

 

Click to enlarge.

Small size 3-wheeled Scooter

Brand: Shoprider Echo 3

Details: comes with charger, extra battery, and device manual.

 

Click to enlarge.

 

Regular size Manual Wheelchair

Brand: Drive

Details: comes with attachable feet rests, fold-able body.

 

 

Large Portable Air Conditioner

Brand: Idylis

Details: 10,000 BTU grey portable air conditioner cools areas up to 450 sq. ft, 3 fan speeds, Dehumidifier mode.

 

 

 

We are also in need of more volunteer drivers from all three counties! Interested in volunteering your time (and vehicle) to deliver equipment to families in need? Call our office at 831-333-9091. Mileage reimbursement included!

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Our Mission:     

The Multiple Sclerosis Quality of Life Project (MSQLP) recognizes that people living with chronic illness have unmet needs. MSQLP is committed to filling these gaps by improving the quality of life of persons with Multiple Sclerosis (MS) in the tri-county area of Monterey, Santa Cruz, and San Benito. Our programs serve families living with Parkinson's disease (PD) in Monterey County. We work with clients and their families to create comprehensive individual plans and programs that support client independence. 

All of our services are free.

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BIRTHDAY BLOCK!
Happy Birthday Month to these great individuals:

Carrieanna Hess- April 4th
Catherine Webert- April 6th
Paula Casillas- April 8th
Carissa Coleman- April 9th
Debbie Allen- April 10th
Lisa Chandley- April 12th
Leroy Lettriere- April 14th
Mohammad Ravanbakhsh- April 16th
Gene Harter- April 20th
Adam Kozoskli- April 21st
Paula Bunyard- April 22nd
Martin Wilson- April 22nd
Mary Bohnen- April 25th
Maura Dorado- April 27th

Don't see your name on here when it should be? Call us at 831-333-9091 and remind us about your birthday!

Spotlight on MSQLP's 3rd annual Purse Party fundraiser:

"Breakfast at Tiffany's"

 

I am excited to invite you to participate our largest and most exquisite fundraiser of the year, benefiting local programs and services provided by Multiple Sclerosis Quality of Life Project (MSQLP)!

 

Attire: Hats & Gloves

 

On May 3, 2015, MSQLP will be holding our Purse Party fundraiser! 

 

Wine, signature drinks, and horsdevoures will be served. Participants will partake in a silent auction in Pebble Beach overlooking the Pacific coast. Designer purses, new or gently used, will be up for bid with all proceeds benefiting local MS and Parkinson's services. 

 

Adult Admission

$75.00
Youth Admission
(13 and under)

$35.00
Table Reservation (for up to 8 people)
$560.00
Did You Know?
Apps for managing symptoms and care for MS and Parkinson's
By Osiris Salgado - MSQLP Case Manager

It seems these days there's an app for nearly everything, and Multiple Sclerosis and Parkinson's Disease are no exception. The following is a list of mobile apps designed to educate you about the disease, keep track of your symptoms, and help you remember your medications.

Parkinson's Disease
PD Life: This app will help you manage Parkinson's disease, be it in yourself or your patients. Record your medicines, set up reminders so you take your meds on time, track your On and Off periods, record your symptoms and inform your doctor of the issues you're facing.

Parkinson's Central: Get all the treatment and care-taking information for a Parkinson's patient in one app.

Multiple Sclerosis
Multiple Sclerosis Self-Care Manager: 
This app is the first in our list that is specifically designed for the MS patient. And, it delivers just what the name implies. Created by the Multiple Sclerosis Association of America (MSAA), users can track their relapses and symptoms, manage their medications, and get the latest in research news. 

Momentum Magazine: 
The quarterly publication from the National MS Society, Momentum Magazine has the largest circulation of any MS magazine. And now there's an app to make reading it on the go possible.

Both
Care Zone: 
Care Zone is an app meant to coordinate family, caregivers, and patients so that everyone in your circle can stay up to date on crucial information. This app is works well for those who have chronic conditions and depend on others for help. Features include: a calendar, a journal, a place to organize photos and files, medication list, and the ability to share all of this with other family members and caregivers.

Pill Reminder: 
Pill Reminder is an easy-to-use and reliable app that helps you remember to take your medications at the right time. It allows you to create any type of recurring reminders (every X hours, specific times, daily, weekly, monthly, every X days, etc). It tracks the remaining quantity of each medication and shows a refill alert when running low.

There are many more phone apps out there that can help you track your symptoms, take notes for medical appointments, and manage medications. A simple search through Googe.com can yield more results.

Multiple Sclerosis Quality of Life Project
519B Hartnell Street
Monterey, California 93940
831.333.9091