Letter from the Executive Director
By Grant Helm
Executive Director
Summer is almost here. And like every year, the Central Coast is blessed with temperate and cool weather for most of the season. I am thankful for this cool weather because it is very important to many of us. It helps us manage our energy throughout the day, and for those that live with MS, the cool weather can help prevent exacerbations from being perpetrated by heat sensitivity.
Towards the end of May, and the end of Spring, the office staff and I found our hands full with the tasks of wrapping up the 2nd annual "It's in the Bag!" Fundraiser that was held at Valentia Piccinini's residence on Sunday, May 4th. I really appreciate the hard work that was put into this event by the fundraising committee that organized this event for MSQLP. All the hard work paid off- we raised $17,000! This was a record amount for any fundraiser ever held by MSQLP.
On to some bittersweet news, two more of our interns, Andrew Garcia and Heidi Castro graduated from CSU Monterey Bay in late May.
 | |
Interns from MSQLP, from left to right: Janelle Delgado, Heidi Castro, Osiris Salgado, and Andrew Garcia
|
Unfortunately, this means that the presence of these interns within the office is no longer academically required. The board of directors and I are very proud of these outstanding young professionals. We wish them the best with all of their future endeavors and I know the skills and knowledge that they learned at MSQLP will be carried on into their careers. In more graduation news, our lead Case Manager, Angie Garayalde, has graduated with her Masters degree in Social Work. MSQLP's case management services are now coordinated by a social worker. Congratulations Angie!
At the end of May, Andrea and I were invited to attend and present at the Consortium of MS Centers in Dallas, Texas. This week-long consortium brings together all groups committed to improving the lives of people with MS: neurologists, clinical researchers, nursing professionals, rehabilitation specialists, mental health professionals, members of the non-profit community and the corporate supporters who have driven many pharmaceutical and technological advances during the past two decades. The content of the meeting includes state-of-the-art information on the latest treatments, research, models of care, epidemiology, genetics, and much much more.
As representatives of MSQLP, Andrea and I were proud to partner with the Multiple Sclerosis Mental Health Professionals' group and provide a symposium offered to thousands of MS professionals who work in healthcare, community service, the pharmaceutical industry, and education. Soon, we at MSQLP plan on getting involved in a Parkinson's consortium of similar caliber.
If you have gotten this far, you can see that May was a busy month for MSQLP. As I look towards the future, I don't see things slowing down anytime soon. The next couple of years will be landmark years for MSQLP, and I encourage all of you to come along for the ride. Next on our calendar of community events is our 8th annual Walk 'n Roll. This event is as much a social event as it is a fundraiser! When this event rolls in August 23rd, we would appreciate your participation in celebrating our local community.
|
|
 |
|
Upcoming Events
(click orange text for flyer)
MSQLP's 8th annual Walk 'n Roll FUNdraiser
Saturday, August 23rd
11-2:30PM
Registration opens: 10:30AM
El Estero Park, Monterey
Want to help us with this fundraiser? We strive to get the local community and businesses involved. You can help us accomplish this mission! Contact MSQLP at 831-333-9091 to learn more!
Support Groups
MSQLP's Salinas MS Support Group
11AM-1PM
Salinas Valley Memorial Hospital
-Cisclini Conference Room #1
MSQLP's Monterey MS Support Group
Saturday, June 21st
11AM-1PM
MSQLP Office- 519B Hartnell St.
Family Caregiver Support Group
Saturday, June 28th 11:30AM-1PM MSQLP Office- 519B Hartnell St.
Water Aerobics
Mondays & Wednesdays
12-1pm @ Monterey Sports Center
|
|
|
|
Closing remarks on the
"It's in the Bag!" Fundraiser
By Grant Helm - Executive Director
MSQLP hosted its 2nd annual "It's in the Bag!" fundraiser on Sunday, May 4th.
Participants of "It's in the Bag!" enjoyed a brilliant afternoon, complete with afternoon tea, wine, and the opportunity to bid on new and gently-used designer handbags.
With the help of the participants and organizations that supported this event we were able to raise $17,000! The revenue from this event will go directly to MSQLP's programs and services for our clients.
Multiple Sclerosis Quality of Life Project would like to thank the following sponsors for their support of the 2nd annual "It's in the Bag!" fundraiser, supporting our local services for families living with Multiple Sclerosis and Parkinson's disease:
Platinum Sponsor:
Valentia Piccinini
Bill & Sherry Young
The Dr. David Morwood Band
Pebble Beach Food & Wine
Beth A. Myers
Gold Sponsor:
Alliance Home Health
Silver Sponsor:
Monterey Dermatology Laser Medical Center
Smith Architectural Studio
A special thank you to Valentia Piccinini for hosting the afternoon tea and fundraiser at her beautiful home in Pebble Beach, and to all of our supporters who donated purses to make this event possible!
We look forward to organizing the third rendition of this fundraiser that will occur in Spring 2015. With the help of Valentia and the committee that organized this fundraiser, MSQLP has already determined many ways that we can improve the quality of this event for the next interpretation of "It's in the Bag!".
If you are interested in viewing pictures from our 2nd annual "It's in the Bag!" fundraiser, you can review them on our Facebook page by clicking here.
|
|
|
|
|
Did you Know?
Online coverage of the Consortium of MS Centers
By Grant Helm
CMSC stands for the Consortium of Multiple Sclerosis Centers. The goal of the Annual Meeting of the CMSC is to provide MS Healthcare Professionals with the most up-to-date information impacting patient care. Much of the information presented at these meeting are very relevant to people living with MS.
It is great to see organizations like MS World providing coverage of the consortium for their audience living with MS. To review the coverage of the
2014 CMSC click here.
To learn more about MS World check out this video.
MS World
 | |
MSWorld - The Magic of Helping Others
|
|
|
|
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 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.
|
$30 will fund outreach services for one client.
$70 will fund one water aerobics class.
$100 will fund a house visit with a client.
|
when you buy a shirt and bag together!
|
 | |
Click on iGive logo for details!
|
Benefit MSQLP just through shopping online!
|
|
|
|
|
|
|
Tip of the Month
Diet and chronic illness
By Angie Garayalde MSQLP Social Worker
When working with clients, we often get asked if we can help connect people with a meal plan or diet designed specifically for individuals living with a chronic illness such as MS or Parkinson's. Many people have heard from various sources to try the Swank Diet, or other specific diets that have been deemed "The MS Diet."
Unfortunately, according to the National MS Society, there is not one particular diet that has been scientifically proven to treat or cure MS. However, there are several general recommendations that professionals seem to agree on when it comes to MS. Here are some you may want to try after consulting with your own healthcare professional:
- Try a low-fat, high-fiber diet similar to what is recommended by the American Heart Association.
- Fill your plate with fresh fruits and vegetables (check out the local farmer's markets for a fun way to try new seasonal foods).
- Reducing your daily intake of sodas and other sugary beverages.
- Stay hydrated by drinking plenty of water throughout the day.
For more information about nutrition and MS, click on the following links:
Living Well with MS
Healthline
Swank MS Diet
But a question still remains, is there a special diet for people with Parkinson's disease?
Generally speaking, if you are taking levodopa, it is recommended to take it 20-30 minutes prior to eating, or an hour after the completion of a meal. This increases its efficacy because your stomach is empty and the drug reaches the first part of the intestine where it is absorbed in a faster manner.
It is also important to know that because levodopa is an amino acid, it competes for absorption with other proteins: Eating a very proteinic meal would reduce the likelihood of efficiently absorbing levodopa. That's why it is better to eat carbohydrates and vegetables at lunch and leave meat, cheese and fish for nighttime.
The Michael J. Fox Foundation has some great information regarding the importance of diet and Levadopa treatment.
MSQLP recommends you review this video and visit the M.J. Fox Foundation by clicking here:
 | |
Ask the MD: Is there a diet recommended for Parkinson's disease?
|
|
|
|
|
Amy's Corner
Be Your Own Advocate
By Amy Lamb Heckel RDH
Biogen Idec presented a Tecfidera educational event on May 17 at the Aptos library. The main presenter was Jong-Mi Lee, a Multiple Sclerosis Nurse Practitioner." Tecfidera is a MS disease modifying medication in pill form that was approved by the FDA on March 27, 2013. Minor side effects include flushing and gastrointestinal discomfort, both of which appear to reduce over time. Ms. Lee recommends taking Tecfidera with food to reduce gastrointestinal discomfort. More serious side effects that have been reported are the decrease in white blood cells and the increase in liver enzymes. Biogen Idec stresses the importance of having your white blood cell count evaluated prior to starting treatment with Tecfidera.
Ms. Lee gave a fascinating presentation and answered all questions the audience threw at her. These included how to best decrease the odor of fish-oil supplements. Her answer? Freeze them!
The MS Advocate Jeanne Carroll also shared tips applicable to life with MS. She spoke about the Access Pass which is a free lifetime pass available to the disabled for the National Parks. This pass also applies to National Wildlife Refuges, and several National Forest areas. She also wanted us to know that discounts (Baseline Medical Allowance) are available to PG&E customers who have been diagnosed with an immune disorder that can require special heating and/or cooling needs.
Both Ms. Lee and Ms. Carroll were emphatic that we all need to be our own advocate. Ms. Lee stated that "symptom management is part of the care of the patient." To us as patients that may seem obvious, however, the medical professionals in our life will never know the extent of our symptoms unless we tell them.
If the Biogen Idec name is familiar to you, it may be because they also produce the MS medications Avonex and Tysabri.
Click Here for a link to the application for the National Parks and Federal Recreational Lands Access Pass
Click Here for a link to the application for the Baseline Medical Allowance discount from PG&E
Click Here for a link to Biogen Idec's Tecfidera website
It is important to note that if you are interested in any of these resources and need assistance completing their applications, please contact MSQLP at
831-333-9091.
|
|
|
|
of Multiple Sclerosis Quality of Life Project
on GuideStar and help us grow!
|
Multiple Sclerosis Quality of Life Project
519B Hartnell Street
Monterey, California 93940
831.333.9091
|
|
|
