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From the President
As usual, things have been hopping around MSQLP. (And, no, the Easter bunny did not pay us a visit!) But, we did have a very successful first fundraiser - "It's in the Bag".
It took a village to make this happen, with many thanks to all involved.
Last week, MSQLP held its second restaurant fundraiser at Jose's on Wave St. Thanks to Robin Morris for providing a great musical performance.
Yet, all is not totally rosy in MSQLP's financial picture. For the second year, the Community Foundation of Monterey County denied our grant. The hunt is on for new grants and possible fundraisers. Any suggestions are welcome. And we are still matching money we've collected against the Harden Foundation's matching $20,000 grant.
Please check out the Flower Power fundraiser on the sidebar. Flowers purchased through this connection will bring MSQLP 50% of your purchase during the month of April.
Since 2004 when MSQLP began offering its free Case Management Program for local people with Multiple Sclerosis, we have worked with over 300 people with MS. We have learned a LOT about the devastation MS can bring upon one's quality of life. We have had a few people move out of this area and we have had some clients die. Two spouses have granted us permission to use their words about the recent passing of their loved ones. So, the spotlight this month is on these two couples who have shared their lives living with MS.
Sincerely,
Andrea Dowdall
Board President
Program Supervisor
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Upcoming Events (click the underlined topics for more info)
Wednesday, April 3rd 1:30-3:30PM
Speaker: Helen Hempel, Elder Law Attorney
The Alzheimer's Assocation Office
21 Lower Ragsdale Drive, Suite B
Monterey, CA 93940
MSQLP's 7th Annual Walk 'n Roll
SAVE THE DATE: September 14th, 2013
Register/Check-In: 9:30AM
Start Time: 10AM
El Estero Park
777 Pearl Street
Monterey, CA 93940 93940
*If you would like to participate in the Walk 'n Roll Committee please call the office at 831-333-9091. Meetings start this month!
Support Groups
"Our Happy Hours" Joint Support Group
Saturday, April 13th 11AM-2PM
Located at the Marina Library
Presentation: CCSVI as a treatment for MS
As a service and courtesy to you, the MSQLP wants to inform you of this educational opportunity. MSQLP has had no role in developing the content or choosing speakers for this program.
Water Aerobics
Mondays & Wednesdays 12am-1pm
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In Memory Of...A special memorial for two very special people who passed away this year.
Linda Holub
January 13th, 1945-February 25th, 2013
"Linda Holub, my beautiful wife of 36 years died peacefully a month ago on February 25th. She was smiling and positive to the end. Although she was quite prepared to make that end of her own choosing based on her own assessment of the indignities caused by MS. She had been accepted for accompanied suicide by both Dignitas and by Final Exit Network. As it turned out she died in our home in her sleep of Cardiac Arrest compounded by Multiple Sclerosis. I always enjoyed spoiling her; and it seems, once again, she got her wishes" written by Bob Holub, loving husband.
Steve Williams
February 1, 1953 - March 6, 2013
John Steven ("Steve") Williams died Wednesday March 6 from complications of Multiple Sclerosis. Steve was raised in Kingsport, Tennessee. He received a master's degree in electrical engineering with honors from the University of Tennessee. He worked at Radio Shack, Digital Research, Sony, Apple Computer and Palm Computers. He was at the forefront of developing hand held computers. He was a long-time member of the Worship Alliance Ministries of Monterey. He leaves behind his wife Robin McKee Williams of Pacific Grove, his sister from Winston-Salem, North Carolina and brother James Edwin Williams of Utah. A remembrance for Steve was held on Saturday, March 16 at the Cypress Community Church.
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Did You Know?
Energy assistance programs available to you. By Grant Helm (MSQLP Staff)
Are your utility bills getting overwhelming? Is the growing warmth of the central coast making you use your household fans and AC units more than you like. Worried about the cost of your next utility bill?
There are several resources available that can help you get your utility bill lowered.
Click on each underlined topic for link to application and more information.
Provides a monthly discount on energy for low income-qualified households
and housing facilities. Qualifications are based on the number of persons living in your home and your total annual household income. PG&E Medical Baseline Get additional quantities of energy at the lowest (baseline) price for residential customers. To qualify for Medical Baseline, a California-licensed physician must certify that a full-time resident in your home has one of these medical conditions: - A paraplegic, hemiplegic, quadriplegic or multiple sclerosis patient with special heating and/or cooling needs
Click here for more Low-Income Energy Assistance Options...
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of Multiple Sclerosis Quality of Life Project
on GuideStar and help us grow!
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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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Click the flowers for an Online Catalog:
50% of profits go to MSQLP!
 | | Benefit ends 4/28/13 |
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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 Month-Choosing the right Doctor
Excerpts from an article written by "Wheelchair Kamikaze"
MS is an incredibly complex disease, and despite decades of research, there is little real understanding of the mechanisms underlying the MS disease process. There are theories, but little in the way of proven fact.
Since so much about MS remains unknown, a good physician will be open-minded, and not be locked into traditional medical dogma.
Recent research has overturned many long-held assumptions about MS, and much has yet to be discovered. A closed minded physician who dismisses new ideas out of hand should be of no use to you, but you do want a doctor who maintains a healthy skepticism of all of the "theories du jour" that tend to whip around the Internet. Your doctor should be willing to listen, but also willing to cogently explain the reasons behind the skepticism that, as an educated patient, you will almost undoubtedly run into.
There are many brilliant doctors practicing MS neurology, but they all have access to the same bag of tools, which includes the same diagnostic tests and the same menu of approved MS treatments. Some are more aggressive than others, and some more willing to try "off label" treatments, none of which at this point has proven to be a miraculous elixir. It's important to choose a doctor whose level of aggressiveness matches your own.
When choosing a doctor, it's very important that MS patients see an MS specialist. The disease is too complex, and the research being done too dynamic, to leave oneself in the hands of a general neurologist. All of the top MS physicians I've seen are passionate about their work, nearly to the point of obsession. These are doctors who have never cured any of their patients. They've been able to help alleviate some of their patients' symptoms and suffering, but none have ever been able to declare a patient free of disease. I imagine this is what drives the frustration that I've seen in the eyes of the best of these doctors.
Finally, some worth recommending is the importance of the efficiency and demeanor of the staff of your doctor's office. Most of the phone calls you make to your MS clinic will not be handled directly by your physician, but by his administrative staff, nurses, and associate physicians. Nothing is more maddening and frustrating than an unreturned phone call when you develop a troubling new symptom, need a prescription refill, or otherwise have a question regarding your condition. Such delays are rude and dangerous, and should simply not be tolerated. Certainly, in a busy neurologist's office, messages can sometimes fall through the cracks, but a repeated pattern of such behavior is reason enough to change doctors. Remember, your doctor and his staff work for you, not the other way around.
This article was taken from a series of opinion articles authored by a man who lives with MS.
If you are interested in reading the complete article from WK click here.
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Multiple Sclerosis Quality of Life Project 519B Hartnell Street Monterey, California 93940 831.333.9091 msqlp@sbcglobal.net
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