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From a Board Member
By Andrea Dowdall
Program Supervisor/
Development Coordinator
MSQLP Board Member
Greetings from Florida and Happy Parkinson's Awareness Month!
Though I moved away, I am very much with you all in spirit. Still on the MSQLP Board, I am also supervising Grant as our Executive Director and Angie as our Case Manager. In addition I am writing grants with Grant and we are currently preparing our presentation at this year's International Consortium of MS Centers meetings.
I love my new home and all the exciting things to do in The Villages. If you have never heard of this 100,000+ community, look it up online and be prepared to be amazed! Much closer to my family, I am adapting to the Florida heat. Don't feel too bad for me as I have almost 70 pools to choose from. But enough about me.
In 2012, MSQLP's Board made the decision to expand our free case management services to people with Parkinson's disease. Last fall, MSQLP began in earnest to accept PD clients. At this time there are only a handful of PD clients in MSQLP's PD Case Management Program. We have the capacity to help many more families living with PD in conjunction with growing and maintaining our MS Case Management Program this year. If you know anyone who might benefit from our programs, please let the office know.
As March was MS Awareness month, April is Parkinson's Awareness Month. PD is a chronic, progressive movement disorder with many symptoms similar to those of MS. Parkinson's involves the malfunction and death of neurons in the brain. Like MS, the cause is unknown and there is no cure. Nearly one million people in the US are living with PD. Similar to people with MS, those with PD often need the support of family, friends, and a healthcare team. This is where MSQLP can play a big role in assisting clients in navigating the various systems, organizations, and resources that can improve the quality of life of all clients. We believe that MSQLP fulfills this role well.
There are many ways that you, as a reader, can support MSQLP. 1) Make a donation. Right now we have a $20,000 matching grant from the Harden Foundation. This mean that every dollar raised by MSQLP is matched, up to $20,000. This is almost 40% of our budget and much needed. 2) Become a Board member. If you want to know what becoming a board member entails, contact the office and they will put you in touch with someone on the Board. 3) Volunteer at the office and at education events and local fundraisers. Remember that we are the only local organization supporting our neighbors with MS and PD!
Andrea Dowdall
Program Supervisor/
Development Coordinator
MSQLP Board Member
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Upcoming Events
(click orange text for flyer)
Saturday, April 5th
Registration opens: 8AM
Sherwood Park in Salinas
Join Easter Seals'
one-mile Family Fun Walk raising funds and awareness for disability services.
Tuesday, April 22nd
6:30PM-7:55PM
The Del Mar in Santa Cruz
National MS Society's
Sunday, April 27
Registration opens: 8AM
Lover's Point in Monterey
A day to come together, to celebrate the progress we've made and to show the power of our connections!
Starts: Tuesday, April 29th
Peninsula Wellness Center in Marina
Financial assistance available through National MS Society application.
Support Groups
Family Caregiver Support Group
Saturday, April 19th 11:00AM-1PM Point Lobos State Park
Salinas MS Support Group
Friday, April18th
11AM-1PM
Salinas Memorial Hospital
Cislini Conference Room#1
Special Guest: Sarah Balbi coordinator for the new MS class starting in late April!
Monterey MS Support Group
Saturday, April 19th11:00AM-1PM Point Lobos State Park
Water Aerobics
Mondays & Wednesdays
12-1pm @ Monterey Sports Center
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Spotlight on the importance of Advance Health Care Directives
New assistance and services offered by MSQLP
By Heidi Castro- Intern at MSQLP
What is an advance health care directive?
An advance health care directive is a legal document that individuals use to formalize their medical decisions for end of life care. These legal decisions are made ahead of time in order to publish a care plan that is understood by your doctors and your loved ones. An advance health care directive is a legal document that becomes effective if an individual is unable to make his or her own health care decisions. This legal document helps doctors, family, and close friends know about the type of medical care preferences an individual wants. The individual with the advance directive can adjust the document at any time since the health of an individual and their values can change over time. Without an advance health care directive, patients and their family members can often feel confusion or disagreement when end of life medical care is needed.
Why should people living with a chronic illness consider an advance directive?
An advance health care directive is an important document to have to represent your values and medical care preferences. Unfortunately, chronic illnesses, like multiple sclerosis or Parkinson's disease, can progress at any time which can leave some individuals without enough time to prepare or to communicate their medical preferences and personal values regarding end of life care. Preparing for those medical decisions with an advance directive can help ensure your values will be secure.
How can an advance directive help improve your quality of life?
By having an advance health directive you will have your future medical decisions in a official document that will represent your values. Advance care planning also involves your family. Having meaningful conversations about end of life decisions is an important family process, regardless of ailment. By not having an advance health care directive, not only can misrepresentation occur about medical treatment decisions, but family disagreements can also occur when the patient can no longer speak for themselves. This can lead to significant stress within the family. Often times, family members want the best medical care for their loved ones. However, the patient's wishes can be different than what their family may want. Even though a conversation about end of life decisions may not be easy to talk about, the burden (or stress) on the family during a medical crisis can be significantly lessened or averted if decisions are planned ahead. Communication between the patient and their loved ones can also improve the quality of care received, which relieves family members from stress and the burden of having to make those important medical decisions on their behalf.
What is MSQLP is doing to help?
For the month of April, I will be working on my graduation project by providing education and assistance for clients who are interested in beginning an advance health care directive. I will provide one-on-one assistance so participants can ask any personal questions and individual needs can be met. Family members and close friends are welcome to learn about advance care planning and engage in the conversation. I will be available for home visits and consultations throughout the month of April.
Call (831) 333-9091 to make your appointment and begin working on your advance directive!
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MSQLP Websitewww.MSQLP.orgOur 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 have expanded to 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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$30 will fund outreach services for one client.
$70 will fund one water aerobics class.
$100 will fund a HouseCall for a client.
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$10 Bundle Deal for
PD Awareness Month!
when you buy a shirt and bag together!
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Click on iGive logo for details!
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Benefit MSQLP just through shopping online!
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MSQLP Water Aerobics in Santa Cruz?
Beginning research on water aerobics program in Santa Cruz county
By Grant Helm- Executive Director
Throughout the years MS Quality of Life Project (MSQLP) has sponsored a free Water Aerobics program offered to families living with Multiple Sclerosis and now Parkinson's disease in Monterey County. This water aerobics program is offered twice a week on Mondays and Wednesdays for one hour sessions. The program is led by an in-water trainer, who directs clients in an aerobic program for stimulating circulation through arms and legs, working on stretching & balance, and providing a comfortable environment for exercise and camaraderie.
MSQLP is always looking for new ways to serve our community. And with increased interest from the Santa Cruz county MS community, we feel the best method to continue our vision is to expand our programs to reach more areas. That is why we have begun researching available avenues to implement a MSQLP water aerobics program in Santa Cruz county. We would like our MS community in Santa Cruz to have the opportunity to experience the benefits of a free and accessible water aerobics program.
An ongoing challenge is the need for more funding. Because all of our programs and services are offered for free, they require continued development in fundraising events, grants, and donations from supporters.
Subsequently, last year MSQLP board and staff worked very hard to increase donations through MSQLP's two fundraisers: our 7th annual Walk 'n Roll and our first ever "It's in the Bag!" purse auction and tea party. This resulted in increased returns from our fundraisers and increased support from our community. However, MSQLP will still need increased grant funding and community support if we are to expand our water aerobics program and continue our vision. A water aerobics program in Santa Cruz will be completely dependent on venue availability, number of participants interested, and most importantly, finding financial resources to fund this program.
Would you like to help make the Santa Cruz Water Aerobics program happen?
There are two ways you can help:
-Fill out this very short survey. If you live in or near Santa Cruz county, this survey will help us identify how many members from the MS community would utilize a water aerobics program in their area. This survey can also be completed over the phone. Call our office at 831-333-9091.
-Help us raise funds for the program. Community funding will be instrumental for this water aerobics program to become a reality. If you are interested in learning different ways you can help raise funds for the program, feel free to give me a call at the MSQLP office: 831-333-9091.
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Tip of the Month
The Importance of Clinical Trials
Excerpts edited by Grant Helm
Source: www.nih.gov- The Basics
Clinical trials are part of clinical research and at the heart of all medical advances. Clinical trials look at new ways to prevent, detect, or treat disease. Treatments might be new drugs or new combinations of drugs, new surgical procedures or devices, or new ways to use existing treatments. The goal of clinical trials is to determine if a new test or treatment works and is safe. Clinical trials can also look at other aspects of care, such as improving the quality of life for people with chronic illnesses.
People participate in clinical trials for a variety of reasons. Healthy volunteers say they participate to help others and to contribute to moving science forward. Participants with an illness or disease also participate to help others, but also to possibly receive the newest treatment and to have the additional care and attention from the clinical trial staff. Clinical trials offer hope for many people and an opportunity to help researchers find better treatments for others in the future.
If you are interested in participating in clinical trials for MS or for PD, there are many databases that are used to connect and inform of upcoming trials in your area. The National Institutes of Health provide a great place to start research and get connected to a clinical trial that is important to you: www.nih.gov/
Also, check out this video published by the Michael J Fox Foundation:
 | | What Is Fox Trial Finder? |
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Amy's Corner
Medical Identity Theft - Really?
By Amy Lamb Heckel, RDH
Yes, really! The purpose of this article is to get you thinking about the things you can do to protect yourself. Sadly, there are some wicked people who will utilize your personal information for their own benefit. The crime of medical identity theft has risen approximately 20% in the last year. Why would anyone want to steal your medical identity?
There are several reasons: someone without insurance may want to pose as you to get treatment, your medical records may enable access to certain medications, and remember your medical records likely contain your address, social security number, and even possibly your signature.
To protect yourself follow these recommendations taken directly from the Medical Identity Fraud Alliance "Review your Explanation of Benefits" (EOBs). Ensure the doctors listed and services provided are accurate. If you find an incorrect item, even if no money is owed, contact your insurance company immediately.
Obtain your "benefits request" annually. Your insurance provider can provide a list of all benefits and services paid in your name, which you can review to confirm all the services listed were received.
Protect your medical insurance card. Leave your insurance card in a safe place, and don't carry it with you unless it's necessary.
Safeguard your insurance-related paperwork. Shred or file your Explanation of Benefits in a safe, and preferably locked location.
Report lost or stolen health insurance identification cards. Alert your insurance carrier of misplaced, lost, or stolen cards to avoid unauthorized use.
Use vigilance when providing your personal or insurance information. Be sure you're dealing with a reputable healthcare provider. Be cautious when offered free medical services. Often fraudsters use this as a way to obtain your health information.
Review your credit reports annually. You have a right to request a free annual credit report from each of the three credit bureaus. Be sure your reports are free of any medical liens."
Links to more information:
CNBC report,
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of Multiple Sclerosis Quality of Life Project
on GuideStar and help us grow!
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Multiple Sclerosis Quality of Life Project
519B Hartnell Street
Monterey, California 93940
831.333.9091
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