MS Awareness Month
MSQLP's e-newsletter: March 2015 edition
Letter from our Interns
Hi MSQLP community! The graduating interns have written the opening letter this month in order to let you all know a little more about us and about the workshops that we have created for you!

My name is Melissa Bowling and I have been with MSQLP since last summer. I have thoroughly enjoyed connecting with some of you through phone calls and at support groups and workshops. On March 21st (10am-1:30pm), I am hosting a workshop at the Monterey Library for the caregivers of our MSQLP clients. I have had seen the tolls caregiving can take on an individual's health and wellness, and after meeting some of our clients' caregivers at support groups, I knew that I wanted to create this workshop for them. At the workshop, I want to discuss self-care practices and help introduce you to new practices, such as yoga therapy. There will be a yoga therapist there to demonstrate some simple breathing exercises that can be easily implemented at home. I will also be providing caregivers with resources, respite care information, and some stress management tips. Caregivers will also hear from Meg Grundy, LCSW about the benefits of counseling and its availability through insurance. We will wrap up with having a networking session with each other as well a program evaluation on the workshop. I really hope this workshop is a success and would love to have it be reoccurring here at MSQLP, and maybe throughout other agencies in California!

My name is Rachel Bedford and have been interning at MSQLP for about a year and half now. After spending this much time with this organization, I have gotten to know many of you through the interactions and activities MSQLP performs and I am grateful at the opportunity to try and help a need that I have identified. When managing the symptoms of a chronic illness, it can be easy to forget the benefits of building a healthier relationship; however, it is often difficult for couples to make their relationships a priority. That is why I am presenting a Relationship Matters Workshop on Sunday, March 29th from 1:00p.m to 5:00p.m. This workshop has been successfully implemented in the National MS Society and I am hoping to bring this effective program to our community in order to help couples improve communication and listening skills, problem solving and conflict resolution skills, ways to break old patterns, and ways to manage relationships proactively. I am hoping that this workshop will provide you with the tools needed to make that step towards prioritizing the health of your relationship and increasing your happiness. I will also provide information on resources for further assistance at the workshop. In addition, because "date night" will be an important issue discussed at this workshop, we will have a few raffle prizes for dates such as movie tickets.  I am looking forward to seeing all of you and your partners at the workshop. 


 

Sincerely,

 

Melissa Bowling

          &

Rachel Bedford

Upcoming Events 
(click orange text for more event info or flyer)

CHARITY DAYS for MS Awareness

A portion of your order goes to MSQLP! 

 

Bagel Corner - Tuesday, March 10th
818 Park Row, Salinas  

15% Charity Day Partner 

Myo Yogurt - Thursday, March 12th 

491 Alvarado St, Monterey  

10% Charity Day Partner

Friday, March 6th

11AM to 2PM
Free Tai Chi at 11AM!
Peninsula Wellness Center - Marina 

2920 2nd Avenue

 

Tuesday, March 10th

3PM to 4:30PM
Sally Griffin Center- Pacific Grove 

Phone: 831-372-7510

 

Wednesday, Mar. 4th @ 4PM

Thursday, Mar. 19th @ 5PM 

To register visit MS101online.com or call 1-800-779-9945

 

MS Event Series w/ Dr. Banks Sponsored by TEVA Neuroscience

Wednesday, March 18th
12PM to 1:30PM
Elli's American Restaurant- Salinas

1250 S. Main Street 

 

Saturday, March 21st
10AM to 1PM
Monterey Library - Community Room
Learn about:
Self-care/Mental Welness
Reduce Stress
Yoga Therapy activity

 

 MSQLP's Relationship Matters Workshop

Sunday, March 29th
1PM to 5PM
Monterey Library - Community Room
What makes a healthy relationship?
Identify relationship challenges.
Resolve communication problems.
Resolve conflict.

 

Call the MSQLP office to register: 
831-333-9091 


MSQLP Support Groups
Joint MS Support Group
Friday, March 20th
11AM to 1PM
Marina Library - Community Room
Guest speaker: Cherie Hotchkiss, Adaptive Yoga for MS 

Family Caregiver Support Group
Friday, March 20th
11AM to 1PM 
Marina Library - Outside Plaza
The topic for the family caregiver support group will be coping with stress.

Water Aerobics
Mondays & Wednesdays 
12-1pm @ Monterey Sports Center

Spotlight on MS Awareness Month

By Grant Helm, Executive Director 

 

Happy MS Awareness Month! 

 

Regardless if you are living with MS or not, this month has something to offer for everyone. And as you have probably noticed, MSQLP is promoting and hosting a lot of events and activities this month! Be sure to review the Upcoming Events section of this newsletter for detailed scheduling info on each event.

 

The MS Awareness Fair is starting this month off at the Peninsula Wellness Center. This event is hosted by National MS Society and will include a resource fair and fun activities such as Tai Chi. I strongly recommend that you attend this event, regardless if you live with MS, as there will be plenty of educational information being provided. In addition, we will be tabling there, so come say hi! 

 

And as our two interns have explained in the opening letter, we will be hosting two workshops for families. At both workshops we encourage families to come to these events together. We understand it can be hard to make time to attend events when there is so many responsibilities at home. In addition, we understand that it can be difficult to be left alone, or leave someone alone when they require much care and attention. Therefore, with the Caregiver Wellness Workshop, we invite partners who are receiving the care to join us at the office for some games and movies while the caregivers participate in the workshop!

 

To us, and to many of our readers, being diagnosed with MS is not always clear cut. "Invisible" symptoms can be difficult to explain to family, friends, and healthcare professionals. Visions of disability or loss can dominate and cause anxiety. But it is important to know that people with MS can and do live life to the fullest. I personally, get to observe this working with families living with MS nearly everyday. So when you are out there, getting things done, spending time with friends and family, or raising awareness for MS this month, just remember: YES YOU CAN! 

Monthly Tip
Adapting your home: when living with MS
Excerpts edited by Rachel Bedford- Intern

Original article by C. Smith, Adapting Your Home to Live With MS


 

Adapting your home environment can help you ease some of the burdens of living with MS. For example, fatigue is one of the major symptoms of MS and simplifying your environment can really help eliminate much of that added stress. Take a look at what you have and really think about whether or not you need it. If the answer is yes, then keep it, but if the answer is no, then sell it, throw it away, or donate it. The less clutter in your home, the less work you have to do. When simplifying your home, it is imperative to look at three main factors: accessibility, vision, and safety.
 
In order to increase accessibility, identify any potential access problems in your home. Adaptive equipment such as walkers, wheelchairs, or scooters requires ample turning space and improving access can lower the burden of fatigue and frustration. Consider your ability to reach high and low storage spaces. Place items that you frequently use in easy to reach places.  By placing frequently used objects in much easier to reach places, you will expend less energy retrieving them.
 
Moreover, the easy to reach zone for most wheelchair users is 1.5ft from the floor to about 4.5ft tall.  This is about standing knee level height to about head height. Objects that are placed at an accessible level for wheelchair users will decrease fatigue and potential falls due to imbalance. You may consider making a "home base" for your important items such as your keys, wallet, cell phone, etc. in order to decrease search time of lost objects.
 
The second important adaption, for some, is learning how to live with lower vision.  Sensitivity to light is another symptom of MS, which can be addressed in your home environment. Think about the lighting in your home. Are there abrupt changes from dark to light in different areas of your home? You may consider adding night lights in places such as dark hallways, dark closets, or anywhere there is a stark contrast from light to dark. Adding night lights to help stabilize the lighting can be a good way to decrease the sensitivity. In addition, it may be wise to minimize reflective surfaces. You can minimize reflective surfaces by removing or covering them. You can also make minor changes in order to rely less on your vision. For example, stove controls, thermostats, and other dials can be marked with differing raised sticker dots in order to know which dial is which or at what temperature you would like to place the dial at.

Safety is by far the most important aspect of adapting your home. Accident prevention should be your primary goal. This can be accomplished by assessing the traffic patterns in your home. Ask yourself if these patterns are easily maneuverable around objects? If they are not, then move or remove unnecessary couches or chairs to create plenty of space. In addition, it is important to keep electric cords, computer cables, and phone charging cords out of the traffic patterns in order to prevent tripping.  

You must also consider where you keep mobility aids. They should be kept out of your way but close enough for you to easily access them. Handrails are also very beneficial when adapting your home. They are great when you need additional support for walking or for transfers. They are often most useful along commonly used walls or by the toilet and shower.
These helpful tips can help simplify your living situation and help you adapt to living with MS. Remember that, although you do not have control over what has happened to you, you have control over how you choose to respond to your changing circumstances. Finding creative ways to make your life easier is comes naturally, when you decide to grow as a result of your experiences. 
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Our 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.

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BIRTHDAY BLOCK!
Happy Birthday Month to these great individuals:

John DiPiazza- March 6th
Isabel Bartfield- March 6th
Dawn Coombs- March 15th
Paulette Patton- March 16th
Leslie Conrad- March 17th
Carol Maben- March 19th
Helen Nyland- March 23rd
Tom Crain- March 24th
Linda Compton- March 26th
Terri Nelson- March 28th
Heather Gardner- March 29th

Don't see your name on here when it should be? Call us at 831-333-9091 and remind us about your birthday!
Did You Know?
Long-term Care Insurance
By Melissa Bowling - Intern

Establishing a long term care plan in advance can help make it easier for you to maintain your dignity, protect your hard-earned savings and secure a more healthy financial future. Unlike traditional health insurance, long-term care insurance is designed to cover long-term services and supports, including personal and custodial care in a variety of settings such as your home, a community organization, or other facility. Long-term care insurance policies reimburse you with a daily amount for services to assist with activities of daily living.

Long-term care insurance can be beneficial in many ways. Most policies that are sold are comprehensive. They allow you to use daily benefits in your home, adult day service centers, residential care facilities, nursing homes and other settings. If using it at your home, the comprehensive policies usually cover skilled nursing care, occupational, speech, physical, and rehabilitation therapy, and help with personal care, such as bathing and dressing. Homemaker services may also be covered, such as meal preparation or housekeeping.

A common misconception about long-term care insurance is that it is only for seniors and doesn't need to be purchased until one reaches an older age or until you need it. NOT TRUE! The younger and healthier you are, the less premium you will pay over the course of your lifetime.

For more information, visit:

Amy's Corner

Baclofen (AKA Lioresal) 

By Amy Lamb Heckel RDH

What is baclofen? Baclofen (also known by the names Lioresal and Liofen) is a muscle relaxant. Many of you reading this may be utilizing baclofen. According to Medscape Neurology, "An estimated 84% of patients with MS experience spasticity - involuntary muscle contractions or sudden movement." If there is anything that you feel others should know about this medication, or your experiences with it, please send an e-mail to the address at the bottom of the article so that I may become more educated on the subject.

Why is baclofen so popular?  It has been used to treat spasticity resulting from  MS, spinal cord injury, cerebral palsy, stroke, and Parkinson's*. This medication is widely regarded as highly effective and as having a small adverse reaction profile. It can be taken orally, by IV, or by a pump implanted in the abdomen which delivers the medication directly to the spinal canal.

The above was confirmed by the informal interviews that I conducted for this article. I spoke with people using baclofen to manage spasms resulting from stroke, restless leg syndrome, multiple sclerosis, and spinal cord injury. The most common route of administration was overwhelmingly oral, followed by the pump, and finally one individual has it administered by IV once every two months. Each person I spoke with reported that they have been thrilled with the medication's effectiveness and have suffered no ill side effects. Although drowsiness is the most common side effect reported in the literature, no one I spoke with has experienced it.

*CAUTION FOR THOSE WITH PARKINSON'S - The following quote is from

"In patients with Parkinson's disease receiving treatment with Lioresal and levodopa (alone or in combination with DDC inhibitor, carbidopa), there have been reports of mental confusion, hallucinations, nausea and agitation. Worsening of the symptoms of Parkinsonism has also been reported. Hence, caution should be exercised during concomitant administration of Lioresal and levodopa/carbidopa."

Care to give me your input on this subject? You can email me by clicking here.

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Multiple Sclerosis Quality of Life Project
519B Hartnell Street
Monterey, California 93940
831.333.9091