|
From a Board Member
Happy Multiple Sclerosis Education and Awareness Month!
Living with Multiple Sclerosis is a daily struggle. MSQLP helps make the struggle more manageable. I know this first hand. My name is Tammy Jennings and I was diagnosed with Multiple Sclerosis (MS) in 1996. My first exposure to others living with MS was a support group where participants of the group were stinging themselves with bees (literally)! I was so scared and depressed by the time I left, I didn't go to another support group for years. That negative experience, however, made me want to help other newly diagnosed MS'ers have a positive, enriching, happy experience. We are all scared at first. But knowing others are around to help with all the aspects of MS from medical insurance & Medicare, to adaptive equipment, and emotional support. A short time after the negative support group experience, I was approached by Lotte Marcus (one of MSQLP's founders) to take a survey she was administering regarding living with MS and my quality of life. That survey helped form the incredible organization known as Multiple Sclerosis Quality of Life Project. I have been involved with MSQLP ever since.
My grandmother once told me that the answer to living a long life was to "just keep moving". "The minute you stop, sure enough it'll [death] get ya!" I understand most of us don't "move" the way we used to, but MSQLP can help us stay active. It hosts a water exercise class on Mondays and Wednesdays at 12:00 noon at the Monterey Sports Center for clients AND their caregivers. Physical activity in the water is great because it is low-impact. Water is an equalizer; you can feel "normal" in the water; you feel weightless. I believe that any kind of water activity is fabulous. You can check out my slalom waterskiing video by clicking here: Tammy's Waterski Video.
This miraculous event happened thanks to an old high school friend (who also has MS) and social networking online. I never thought I would be able to water ski again, even after multiple attempts, but she told me to come to Colorado and she would borrow a "boom" that could help me get up on skis. To make a long story short, she did. I got up on two skis for about 10 seconds before the end of my first visit. Three years later, I was able to single ski using a tow rope!
Adventures and unique experiences are still out there for all of us. We are limitless and can achieve anything.
We need to support each other and come together as a community. This is not just limited to the MS population, as MSQLP is now working to invite individuals and their families living with Parkinson's disease to our community. So please join us at our upcoming events. We will host a "It's in the Bag!" Purse Auction and Fundraiser on Sunday, May 4th. In addition, I am helping MSQLP develop the 8th Annual Walk-n-Roll on August 23 at El Estero Park. MSQLP has monthly support groups, this year we have started a support group for family caregivers of individuals living with MS or Parkinson's.
Please participate; be on a committee; join the MSQLP Board; volunteer your talents, i.e., photography, yoga, cooking, wood working, computers, knitting, etc. Share your gifts; share yourself.
We're all in this together!
Sincerely,
Tammy Jennings
MSQLP Board Member
|
|
 |
|
Upcoming Events
Friday, March 7th
10AM-2PM
CHOMP Peninsula Wellness Center in Marina
Click to see:
For the Month of March
Support GroupsFamily Caregiver Support Group
Saturday, March 8th
11:30AM-1PM
MSQLP Office
519B Hartnell St
MS Support Group
Saturday, March 15th
12-2pm
Marina Library
Water Aerobics
Mondays & Wednesdays
12-1pm
|
|
|
|
Spotlight on the healthcare reform
Patient Protection and Affordable Care Act: Assistance offered by MSQLP
By Andrew Garcia- Intern at MSQLP
One of the biggest changes in the current health care reform is the introduction of the new health care marketplace called Covered California and the expansion of Medi-Cal services. The marketplace is a forum where individuals can compare, choose, and purchase health insurance plans. The marketplace provides four different plans that an individual may choose from (Bronze, Silver, Gold, or Premium). Each plan has different rates of deductibles, co-pays, and premiums. Based on your income, you may qualify for Med-Cal services or you may be eligible for insurance with financial assistance through the Covered California marketplace.
The Patient Protection Act also brought about a standardized level of care that is offered in all health insurance plans that are offered in the Covered CA market place.
The essential health benefits of Covered California:
- Ambulatory patient services
- Emergency services
- Hospitalization
- Maternity and newborn care
- Mental health and substance use disorder services, including behavioral health treatment
- Prescription drugs
- Rehabilitative and facilitative services and devices
- Laboratory services
- Preventive and wellness services and chronic disease management
- Pediatric services
- Accessibility for all individuals living with a pre-existing condition
MSQLP is aware and enthusiastic about the instrumental changes happening in California's healthcare structure due to the Patient Protection and Affordability act. We are eager to assist clients with the new changes and available financial subsidies included in the insurance packages available for MS patients.
For the next two months (March & April) our intern, Andrew, will be offering 1-on-1 assistance and counseling on eligibility for the Medi-Cal expansion or help with shopping for a new health insurance plan through the Covered California marketplace. Included in this 1-on-1 service, is education about important insurance coverage and resources for continued help.
|
|
|
|
|
Did You Know?
The Non-Motor Symptoms of Parkinson's Disease
Excerpts edited by Grant Helm- Executive Director
Original Article can be found here:
American PD Association
There is increasing evidence that non-motor symptoms of Parkinson's disease aren't simply the result of medication side effects or life circumstances, but are caused by the disease itself. Non-motor symptoms affect the way we think, feel and behave. Many people with Parkinson's focus much of their time and energy on managing the non-motor symptoms of the disease in order to maintain their quality of life and their commitments to family, friends, and career. Like multiple sclerosis, not every person will have every non-motor symptom, and not every person will experience the same severity of symptoms.
Mood Changes
These are some of the most common non-motor symptoms of PD and may predate motor symptoms by several years. They are particularly challenging symptoms for young people and families because they can decrease or eliminate the motivation to seek or accept help.
People with young onset PD may notice changes in the way they retain and/or process information. Many young people report they are unable to manage as many tasks simultaneously as they once were. Changes in cognition often set off alarm bells; however, memory problems are not necessarily equated with dementia. Cognitive issues related to PD may include:
- Executive functioning (i.e., difficulty multi-tasking)
- Slowed cognitive speed
- Memory
- Dementia
These symptoms often manifest as obsessive-compulsive behavior such as excessive shopping, gambling, hyper-sexuality, or binge eating. It is important for the person with Parkinson's and the family to be aware of these potential symptoms as they can have devastating consequences. If behavior changes like these should occur, the physician should be notified.
As the disease progresses, cognitive and other non-motor symptoms continue to be a significant aspect of living with Parkinson's. Joanne Hamilton, PhD, ABPP-CN of Advanced Neurobehavioral Health of Southern California in Poway, CA explains what to expect and how to distinguish symptoms caused by Parkinson's from those caused by medications.
Click to watch her presentation as it offers hope and practical strategies for understanding and managing cognitive and non-motor challenges.
|
|
|
|
|
|
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.
|
$30 will fund outreach services for one client.
$70 will fund one water aerobics class.
$100 will fund a HouseCall for a client.
|
$10 Bundle Deal for the Month of March- MS Awareness Month!
when you buy a shirt and bag together!
|
 | |
Click on iGive logo for details!
|
Benefit MSQLP just through shopping online!
|
|
|
|
|
|
|
Tip of the Month
Advocating as a patient: best practices to strengthen communication with healthcare professionals
By Angie Garayalde- MSQLP Case Manager
Many of us have been taught from a young age to respect and obey authority. These authority figures may have included parents, teachers, the yard duty on the playground, and doctors. This sense of respect can be a great thing - it teaches us socially acceptable ways to behave, and allows us to learn and grow. However, our inherent respect for authority can often make it difficult for us to communicate effectively with our healthcare providers.
Some of us are lucky enough to have doctors with fantastic "bedside manners" who know when to slow down and make us feel comfortable. But, some of us are not so lucky. For some of us, a trip to the doctor's office can be intimidating and unfavorable. In times like these, it can be helpful to remember that, though we rely on doctors for their extensive education and training, we are responsible for advocating for our own wellbeing because we know our body best and ultimately, we care for it the most. Whether it be with your primary care doctor or your neurologist, it's important to establish strong and open communication.
Here are some tips to remember when heading to your next doctor's appointment:
- Keep a list of the questions you'd like to ask. Once you're on that exam table, it's easy to forget the hundreds of questions you may have had before walking through the door. Keep an ongoing list of any health-related questions on your smartphone or in your wallet/purse so that you always come prepared.
- Speak up. If you don't understand something you're being told, don't be afraid to ask for clarification. It is your right as a patient and a person to have comprehensive knowledge about what is going on inside your body.
- Take a trusted companion along. If you're not feeling well or just have a busy and chaotic life, it can be easy to forget important details that were discussed during an appointment. Bring a friend to be your emotional support, your second set of ears, and often times you'll find a close friend or relative will share important details with the doctor that you hadn't even thought about.
- Be informed. Keep up to date with current research on MS treatments and procedures. The more understanding you have of MS treatments, the more you can weigh out pros and cons with your healthcare provider to determine which avenues are the best to take for your individual situation.
You can read the Multiple Sclerosis Association of America's new and annual Research Update here.
|
|
|
|
Amy's Corner
Heard of the Swank diet but unsure what it is all about? Here are some details. The diet was developed by Roy L. Swank MD., PhD. in 1948 after he discovered that, "The existence of MS [in Norway] along the coast was rare (about 1 per 10,000 persons). In the mountains it was more common (about 9 per 10,000 persons)....In the mountains the rural families lived largely on meat, milk, eggs, and cheese, whereas along the coast, people consumed fish and other food sources found in the ocean." Therefore, Dr. Swank developed and advocated a low-fat diet for people with MS.
Though his book is titled "The Multiple Sclerosis Diet Book" with the subtitle, "A low-fat diet for the treatment of MS" there is some controversy about using the word "treatment." It is the position of the National Multiple Sclerosis Society that, "there is no generally accepted proof that the Swank diet really controls MS." However the Lancet medical journal published the following statement which is rather convincing. "144 multiple sclerosis patients took a low-fat diet for 34 years. For each of the three categories of neurological disability (minimum, moderate, severe) patients who adhered to the prescribed diet (≤20 g fat/day) showed significantly less deterioration." Neurologist Vijayshree Yadav wants her MS patients to experience the benefits of a low-fat diet. "It's healthy and it's such a low-risk intervention that I don't see any reason not to recommend it." To discover exactly what the Swank diet entails, keep reading.
The following requirements of the Swank diet were taken directly from the Swank Foundation website. "Saturated fats should not exceed 15 grams per day. Unsaturated fats (oils) should be kept to 20-50 grams per day. No red meat for the first year. After the first year, 3 oz. of red meat is allowed once per week. Dairy products must contain 1% or less butterfat. No processed foods containing saturated fat. Cod liver oil (1 tsp. or equivalent capsules) and a multi-vitamin and mineral supplement are recommended daily." As you can see following the Swank diet is no easy task. Allen C Bowling MD, PhD states, "I don't think the Swank Diet is harmful, but it's hard to stick to."
Click here to visit to the Lancet
Click here visit a National MS Society article on diet and MS
Click here to visit the Swank Foundation Website
|
|
|
|
Multiple Sclerosis Quality of Life Project
519B Hartnell Street
Monterey, California 93940
831.333.9091
|
of Multiple Sclerosis Quality of Life Project
on GuideStar and help us grow!
|
|
|
