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From the President
Walk and Roll was a blast as always and we had tremendous response from the MS community and friends of MS'ers - the Walk and Roll committee did a fantastic job organizing the event - and I believe all who attended had fun seeing their MS friends and participating in the activities. The sponsors joined in the fun too with a couple of them winning some of the awesome prizes we had this year.
The record number of prizes we had was thanks to Tammy Jennings (MSQLP board member). In addition this year, we had a trio of musicians who serenaded us during the lunch of barbequed polish sausage, hot dogs, hamburgers, tasty sauerkraut as well as fresh fruit and other delectable's for dessert. Once again Lotte Marcus (one of MSQLP's Founders) came to participate and support the event as well as to say so long to Andrea Dowdall (our previous board president).
It is our intent to build on and utilize what we have done successfully in the past as we plan for the current and future efforts of MSQLP. Our Board is vibrant, growing and committed to raise the funds necessary to continue our services to the MS community in Santa Cruz, San Benito and Monterey counties.
We are already hard at work with four more planned educational events and workshops before the end of this year. We will be mailing an events calendar to most clients. Your participation is invited!
Sincerely,
Gene Harter
Board President
Founder
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Upcoming Events
(click the underlined topics for more info)
Advance Care Planning Workshop for MS & Parkinson's Disease FamiliesFriday, October 18th 11AM-1PM Marina Library- Community Room
In collaboration with Compassionate
Care Alliance, MSQLP will be providing a free workshop where clients and their families can learn the importance of making future health care choices known to loved ones. Lunch will be provided. Check-in begins: 11:30 AM
Embassy Suites Monterey Bay 1441 Canyon Del Rey Seaside, CA 93955
Speaker: Daniel S. Bandari, MD Call to register: 1-877-219-0410
If you're looking to learn about different options for treating your MS relapses, you are invited to this free educational session where MS healthcare professionals will discuss:
* The difference between MS relapses and pseudo-relapses.
* The importance of treating your MS relapses.
* How to talk about your MS relapses with your healthcare provider.
* Available treatment options for MS relapses.
Support Groups
Special MS Support Group Meeting
Friday, October 25th 11AM-1PM
Marina Public Library
Veronica Jefferson, MEd
will be presenting on the topic of "Every Day Matters" with intimate discussion to follow.
Water Aerobics
Mondays & Wednesdays 12-1pm
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Spotlight on Advance Healthcare Planning
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An "advance health care directive" lets your physician, family and friends know your health care preferences, including the types of special treatment you want or don't want at the end of life, your desire for diagnostic testing, surgical procedures, cardiopulmonary resuscitation, and organ donation.
By considering your options early, you can ensure the quality of life that is important to you and avoid having your family "guess" your wishes or having to make critical medical care decisions for you under stress or in emotional turmoil. You may also name an alternate agent to act for you if your first choice is not willing, able, or reasonably available to make decisions for you.
Unless you state otherwise, your designated agent will have the right to:
1. Consent or refuse consent to any care, treatment, service, or procedure to maintain, diagnose, or
otherwise affect a physical or mental condition.
2. Select or discharge health care providers and institutions.
3. Approve or disapprove diagnostic tests, surgical procedures, and programs of medication.
4. Direct the provision, withholding, or withdrawal of artificial nutrition and hydration and all other forms of health care, including cardiopulmonary resuscitation.
5. Donate organs or tissues, authorize an autopsy, and direct disposition of remains.
An advance directive also lets you give specific instructions about any aspect of your health care, whether or
not you appoint an agent. Choices are provided for you to express your wishes regarding the provision,
withholding, or withdrawal of treatment to keep you alive, as well as the provision of pain relief. Any time is a good time to start gathering information for future healthcare decision-making. Your physician is a good place to start for understanding your options on health care treatment at the end of life. In addition, many organizations have information that may be useful: caringresources.org When you complete an advance directive, give a copy of the form to your physician, to any other health care providers you may have, to any health care institution at which you are receiving care, and to any health care agents you have named. You should talk to the person you have named as agent to make sure that he or she
understands your wishes and is willing to take the responsibility.
You have the right to revoke this advance health care directive or replace this form at any time.
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Did You Know?
Information about Healthcare Reform
By Andrew Garcia- MSQLP Intern
Did you know that reform of the United States healthcare system has begun this month? Currently, you can begin shopping for government-subsidized health insurance plans. Let's take a look at what changes are happening now, and what changes may be affecting you in the near future.
Health Insurance Market Place
The new Health Insurance Marketplace is a large web-based platform where people can enter their information and receive comparison data on different insurance plans (monthly premiums, deductibles, and expected costs & co-insurance fees for common procedures, medical equipment & medications). This is a very similar concept to Orbitz and Travelocity. When you input your income into the system, the Marketplace will identify whether you qualify for Medi-Cal. In addition, the Marketplace will be broken down into 3 levels of service:
Bronze: lower premium cost, but higher out-of-pocket (co-pay) for health services.
Silver: higher premiums than bronze, but more moderate out-of-pocket (co-pay) for health services.
Gold: highest monthly premiums, but lowest out-of-pocket (co-pay) medical costs.
Because MS medication (disease-modifying therapies and some symptom-management treatments) are considered "specialty drugs," they are classified as a Tier 3 and Tier 4 (highest co-pay levels) in the new healthcare plans. This is very important considering how crucial MS therapies are to many people living with MS. You can look at the new available insurance packages here: Covered California
Beginning in January 2014, more changes will be implemented into our health insurance system. Individuals with MS must consider the improvements that will be happening to Medicare and Medi-Cal.
Changes in Medicare
Medicare Part D:
In 2014, Medicare will pay 21% of the price for generic drugs during the coverage gap while the patient will pay the remaining 79%. What the patient pays for the generic drugs will continue to decrease each year until it reaches 25% in 2020.
Changes in Medi-Cal (Medicaid)
California will expand its Medicaid program in 2014 to cover households with incomes up to 133% of the federal poverty level. That works out to about $15,800 a year for 1 person or $32,500 for a family of 4.
You can find out more about the Medicaid expansion here: Healthcare.gov
How will healthcare reform impact individuals who currently have insurance?
The ACA or "Obamacare" will impact many individuals who have insurance already. Some of the benefits that will be put into place are:
- Removal of pre-existing condition limitation,
- The elimination of dollar limits on annual & lifetime capacity benefits for healthcare coverage,
- and benchmark plans that set minimum benefit standards on a broad array of health services.
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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. We are committed to filling these gaps by improving the quality of life of persons with MS in our local communities. We work with clients and their families to create comprehensive individual plans and programs that support independence. 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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$15 Bundle Deal
when you buy a shirt and bag together!
Call 831-333-9091 to reserve your size now!
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Click on iGive logo for details!
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Benefit MSQLP just through shopping online!
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Tip of the MonthBy Angie Garayalde- MSQLP Staff
Clinical trials, sometimes referred to as clinical research studies, are how the safety and effectiveness of any new medication are assessed. These trials take place under the supervision of a doctor and usually, a large research team. To enhance the safety of participants, clinical trials are always approved by an internal review board or ethics committee before trial begins. Participating in a clinical trial can pose some unpleasant, or even frightening, risks such as serious side-effects or ineffective treatment. However, being a part of a clinical trial could have the potential for substantial benefits. The National MS Society states that clinical trials can give people with MS the opportunity to play an active role in the fight to eliminate MS, give people access to new medications not yet available to the general public, and help others by contributing to medical research. Currently, two different clinical trials have come across MSQLP's radar. The Radiance Study is a clinical trial exploring the safety and effectiveness of an investigational oral medication for relapsing remitting MS. The study is funded by Receptos, Inc. and looking for individuals 18 to 55 years old who suffer from MS and have had at least 1 documented relapse in the last 24 months. For more information on the Radiance Study, visit RadianceStudy.com Another clinical trial of interest is a study by Kadence International looking to explore the experiences of individuals receiving various forms of MS treatment. The study's participants would be required to participate in an online bulletin over the course of 6 to 8 weeks. A monetary compensation is available to those who complete the study. For more information about the study, please contact: Elizabeth Staples at (508) 283-5025 or estaples@kadence.com. If you are considering participating in a clinical trial for a new MS medication, please speak with your doctor. Visit National MS Society to read more on the benefits and risks of participating in clinical trials. |
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Amy's Corner
MS Friends
By Amy Lamb Heckel, RDH
Have you ever just wanted to speak to someone who can really understand what living with MS is like? Have you ever needed the opportunity to express your MS created frustrations to a listener who will not try to change you nor perceive your frustrations as criticisms? If so, read on.....
MSFriends is a peer support program that you can access by telephoning 1-866-673-7436. MSFriends now operates under the umbrella of the National Multiple Sclerosis Society (NMSS) and is open from 4 a.m. - 9 p.m. Pacific Time. Everyone answering this telephone line is both a volunteer and has been diagnosed with multiple sclerosis. Though they may not experience the exact same symptoms as you, they do have a personal understanding of the challenges faced by people living with MS.
This support program is primarily designed for people diagnosed with MS. However, this line is available for people whose lives are affected by MS, be it a spouse, a parent, a child, and/or a caregiver. "All conversations are confidential to the peer relationship" states the NMSS. You can feel assured that your topics of discussion will travel no further.
The people answering this line have a wealth of information and resources that they are able to share with you. Although volunteers can share personal experiences (if they so choose), they can NOT give medical advice. Give them a call. You may be pleasantly surprised at their kindness. They are there because they want to help you discover new resources and to help you to smile.
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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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