Making Friends and Finding Support

Making friends as an adult can be a challenge. Often the friends we have as adults are those we have grown up with, either through grade school or college. Sometimes those friendships change and we find ourselves looking for new friends, or friends that share a common interest, skill, or lifestyle.

Individuals diagnosed with MS may be looking to make connections with others that are diagnosed, but have a hard time meeting people face to face. There are several opportunities available to promote friendships and support to those diagnosed and their family members.

Social media can be a great way to get connected, just be comfortable knowing that your diagnosis or personal information can be shared online. Facebook groups allow individuals throughout the world to connect and share information; search in Facebook ‘multiple sclerosis’ and find a number of private or public groups. Online message boards such as MS Connection or MS World can also be an effective way to find individuals who are interested in a certain topic.

If online communication is not your thing, MS Friends, a program organized by the National MS Society connects individuals with MS through a telephone service. You can contact 1-866-673-7436 and speak to an individual with MS. MSAA also offers a Networking program, which can connect individuals through letters or e-mails.

With so many options to get connected, how do you stay in contact with others?

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To Know, Or Not To Know?

That is the question, at least today as it pertains to learning about the disease of MS. As we close in on a month dedicated to MS awareness, many individuals still do not know much about this rare disease. One challenge lies in the fact that the information available on MS can be very overwhelming at times, especially as the internet alone exudes multiple portals of literature and resources about the disease. This can sometimes have the opposite effect on education; rather than pulling people in to learn more, it actually sometimes intimidates people to the point where they shy away from learning more about it. This is completely understandable – MS can be difficult to understand and grasp, so it’s a process to educate oneself and others about it. So the question is, is it better to know, or not to know?

When MS touches the life of someone you know, love, interact with, or share a history with, it can be hard to comprehend what this disease is that’s affecting that person. If you didn’t have knowledge of what it was before, this may be a whole new learning process for you as well. Being part of someone’s support network keeps you tied into what’s going on in their daily experiences, so knowing what MS is and its process can help keep you informed of what they’re going through, and how you may be able to offer support when needed.

It’s not something that can be learned or taught overnight. It’s a process – and one that doesn’t have to be done alone. Talking about MS with family members, friends, peers and other support resources can aid in the significant education piece that comes with the disease. Learning more about it is the first step in knowing what it is and how you can offer your support. It can start with just an overview of MS information, and lead into further discussions and outreach. It’s also important to know that it’s ok to take your time learning about MS – review the information as you’re comfortable doing so at your own pace, and when you have questions reach out and ask. In the matter of MS, the act of knowing can be more beneficial than not.

Share something new you’ve learned about MS…

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National Love Your Pet Day

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In honor of National Love Your Pet Day, the “unofficial” national holiday set aside to give extra attention to and pamper your pet that you love every day. This is a good day to focus on the special relationship that you have with your pets.

Having a pet has proven to provide many physical as well as mental benefits. Therapeutically, a pet can lower blood pressure and have a calming effect over an individual, which can lead to diminishing some pain symptoms. Pets also encourage communication (who doesn’t talk to their pet), as well as provide support and comfort.

When feeling anxious or nervous about a new situation, perhaps lean to your pet for support. A pet is a perfect soundboard for thoughts and feelings and even better, they can’t talk back! Maybe there is an uncomfortable topic you wish to discuss with a loved one, try practicing speaking out loud to your pet exactly what you wish to say. The extra practice in expressing your thoughts can provide confidence and re-assurance in the situation.

While your pets can’t role play the situation back with you, having practiced saying a thought or feeling may help alleviate some of the anxiety around the situation. It may also provide you with the opportunity to hear how your words would sound to another person. Have you ever made a comment and then realized ‘that wasn’t what I meant to say.’ Practicing beforehand allows you to make changes to ensure that your message is properly received.

In what ways is your pet a support to you?

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Loving Yourself First

What is love? Webster’s dictionary defines love as “a feeling of strong or constant affection for a person”. After a day like Valentine’s Day, it is hard not to question the concept of love. Perhaps you are in a long term relationship, maybe you have yet to find love, or have just ended a relationship. By definition, love doesn’t solely rely on a relation with another person, it can define the feeling you have for yourself as well.

Truly loving yourself and having the respect for the person that you have become can be a challenge for some. Uncontrollable events occur in life that may change the way that one perceives themselves. Perhaps there are goals or outcomes that seem unmet, or feelings that are unresolved. Coming to a place of understanding and acceptance of the uncontrollable events and embracing the change they may have created is the first step in loving who you are as a person.

By accepting the changes that have occurred, you allow yourself to move forward without any self-doubts or negative thoughts. But this too is a process. One does not wake up one morning and choose to accept the many years of life’s up and downs. Daily affirmations or positive thoughts about your self can be an effective way to practice self-love and acceptance. You can create your own, or utilize one of the many that can be found in books or online.

The Law of Attraction states, “like attracts like”, meaning, what you put out into the world, is what you attract. If you feel positively about yourself and love yourself, you will attract that same level of positive energy in another. When you don’t like yourself, or don’t feel yourself worthy of love, it can be difficult for someone to find that in you as well.

The change to a place of self-acceptance and love cannot occur overnight. If you feel as though you need additional support or help in removing the self-doubts or negative thoughts, a counselor may be able to assist in getting to the root of those feelings. Everyone has a right to be accepted and loved, personally and by others. If possible, seek help from a support group or counselor. It is never too late to make a change.

“The turning point in the process of growing up is when you discover the core of strength within you that survives all hurt” –Max Lerner

References:
http://www.merriam-webster.com/dictionary/love

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Communication is a Two-way Street

Sometimes you may feel like you are talking at someone. As if the things you are saying hit an invisible force field and bounce back toward you with no impact on the person you are speaking to. When this happens it can cause feelings of frustration.

You may think: Are they even listening? Do they care? How do I make them hear what I am really saying (and not just what they want to hear)?

Communication can be difficult when the person you need support from is on a different page. You may feel they are unresponsive, unrealistic, or uncaring. The other person may be thinking about something totally different, they may be unmoved by your appeals, think you are incorrect in your logic, or something else entirely.

You can only do your best to communicate your needs and sometimes you may not get those needs met. Why, because communication is a two-way street. Talking at someone rarely effects change. To make a difference it often requires both sides to give a little and meet somewhere in the middle or for one person to make concessions to another.

When no one gives a little, situations can explode. For example: “I need help with the laundry, it’s getting too difficult to carry it up and down the stairs” over time can turn into “You didn’t change the laundry again. Do you even care about my fatigue and how that makes me feel?”

Or “Doctor xyz about that medicine makes me really uncomfortable.” Response: “You will take the medication prescribed, I’m the expert here.”

If both sides can collaborate and agree to a plan of action it may result in a better outcome. “Let’s make a plan for you to help me with the laundry every Monday so we can all have clean clothes for the week.”  “Okay, but if I forget please just remind me when you want it done before getting upset.”

Or “If that doesn’t work then let’s talk about what other options for treatment we have available and try to select something we can both agree on.” Creating a clear plan of action can remove frustration and set realistic expectations for each party.

If ultimately, the other person refuses to listen or budge on an issue you may have to try and get your needs met in other ways. “My mom agreed to come over to help wash the clothes” or “I’m finding a new doctor.”  As you can see in some circumstances seeking other support can help to resolve the issue but sometimes at a steep cost.
If you run into a situation where someone will not meet you in the middle you will need to review the pros and cons of your alternative options and remember that communication is a two-way street.

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Some Extra Holiday Help

There is no doubt that the holidays are rapidly approaching these days, especially with cooler temps across the country and decorations filling the stores as continuous reminders. While this time of year translates into joy and cheer for most, for some individuals this may represent a time when some extra help is needed to make the holiday special. Financial difficulties can make expectations of the holidays a struggle, but it’s important to know that there are resources available that may help support your holiday activities, and therefore lift some of the stress that can accompany these festivities. The following community resources may offer help through the holidays:

  • Salvation Army offices offer seasonal services and holiday assistance programs to help families in need with holiday dinners, toys, and clothing. Search for your local office to inquire about direct programs and services and application time frames.
  • The United Way can offer information and referrals for holiday assistance programs in your community.
  • Contact the county department of family/social services in your area, as their office may have additional holiday assistance and resources available.
  • The Toys for Tots Program provides new, unwrapped toys during the holidays to children in need through community outreach and support efforts.
  • Local religious organizations may offer seasonal assistance as well, though these programs can vary based on location. Contact the groups directly to inquire of services available.

Many community assistance programs have specific application deadlines and requirements in order to receive holiday assistance by a certain time. Be sure to reach out to the resources to see what’s available in your area and how to apply. Some extra holiday help can go a long way!

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Adjusting to Change

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Change is something that continually occurs throughout life for all people and to different degrees. Change may have very mild, subtle effects, or very significant effects depending on what’s being altered. Sometimes change can be a good thing, and sometimes not. One of the most difficult concepts to accept about change is that at times you have no control over it. In our individualized society we try to live by the mantra that we control our lives and what happens to us day-by-day, but this is not always the case. Sometimes the unexpected arises and we play no part in its occurrence. An unexpected illness, a loss, or other unforeseen situations are some of the incidences that can transpire due to no control of our own. When the unexpected occurs, what can you do to help adjust and cope with this new-found circumstance, that wasn’t necessarily welcome or planned for?

  • Talk to others about the changes that have occurred. Communicating to trusted loved ones, friends or your healthcare team can help you explore ways to adjust by receiving outside perspectives.
  • Reflect on what the change has affected. By recognizing what’s different you can make your own adjustments that will work for you in your day to day.
  • Explore your support resources. If change has had emotional, physical, or social impacts for you, it’s important to know who you can reach out to for help.
  • Bring focus to things that you enjoy and that you can control in your day-to-day. Make decisions that help to ensure that changes are modified to fit your needs.

Change can take some getting used to, especially if it’s something unpredictable. Though some things are uncontrollable and unforeseen at times, individuals do hold influence over the way they can approach change and react to it. It’s how you make the change work for you that’s significant.

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Getting Help at Home When You Have MS

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With years of increasing research and data on the condition of multiple sclerosis, it’s known that MS can be unpredictable and ever-changing in its course, potentially having an impact on different aspects of life for those affected. For some individuals, there may be a time when MS symptoms create change that requires additional assistance in the home, to try to help manage daily activities and duties of the household. Meal preparation, shopping, personal care, and chore responsibilities are some things that may require extra help and attention to complete. Asking for this help can be difficult for some; noticing that how things were done before may look different now and that more help is needed for certain tasks can be hard to accept. Change can be challenging, but it’s important to know that you are not alone in this, that at one time or another everyone’s asked for help, no matter the task. Figuring out what your needs are in the home and where to find help are important parts in starting this process.

Examining what it is that you need help with in the home is a good first step in trying to find assistance. Talking with healthcare professionals like your doctor and possibly a physical or occupational therapist can help determine what your needs are in the home pertaining to your medical condition. Family, friends, or significant others can assist you with this process as well, providing feedback as to what may be helpful and needed to complete certain tasks and duties in the household. Whether it is personal care attendance services or assistive equipment devices, there are a range of services that may be beneficial to you. After your needs have been assessed within the home, supportive resources and contacts can be made to identify potential sources of this assistance.

If you have health insurance coverage, a contact can be made to your insurance provider to identify potential equipment items or in-home health care services that may be a part of your coverage plan. Your insurance provider would be able to explain what services, if any, are offered within your particular health plan. In regards to possible community supports, there are homecare resources and service programs offered through county offices in the U.S. called area agencies on aging. These county offices provide information and referral services regarding community homecare assistance to those with disabilities and older individuals. They maintain a database of information for home health services in the area, as well as caregiver resources and support services. To search for your local area agency on aging, visit the Eldercare Locator website.

For individuals whose needs may not currently be at the level of requiring additional assistance in the home, it may be beneficial to explore long-term care options to have a plan in place for potential future needs. Researching long-term care insurance coverage options and other benefits can be useful to attain additional information for homecare services. The non-profit organization Life Happens provides education concerning long- term care insurance benefits and ways to find coverage.

If you do find you need additional assistance in the home, it may be helpful to have a discussion with your doctor first in regards to what your needs are, as this can lead to identifying sources of support within the community.

 

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Multiple Sclerosis Around the World

Looking at MS around the world, the Multiple Sclerosis International Federation is an international organization offering support and advocacy for those with MS throughout different countries. Their initiatives include communicating information about MS to a global audience, especially where there is little MS support. They also work and coordinate with other MS organizations to advocate for research efforts and campaigns to help those living with MS, including World MS Day each year. They have several member organizations throughout different countries, and act as an international hub of MS information and support.

With MS affecting individuals throughout the world, it is imperative to have an international resource in place to turn to when information, support, and advocacy are needed. Through publications, newsletters, and weekly MS research updates, the MSIF offers those with MS increased awareness of the disease and its impacts. The group provides an opportunity for those countries without much MS awareness to receive additional support and resources.

As MS continues to be researched and investigated across the world in regards to its potential origin and treatments, the MSIF stands as a pioneering network to keep those in MS communities around the world apprise of new developments.

For more information about the MSIF, visit their website.

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6 Ways to Support the Multiple Sclerosis Community

Looking for some creative ways to support individuals living with multiple sclerosis (MS)? In the following list, we’ll show you six different ways you can help MSAA improve lives today—without breaking the bank.

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1. AmazonSmile— AmazonSmile is a great way to support the multiple sclerosis community without spending extra money. Simply select the Multiple Sclerosis Association of America as your charity of choice, and Amazon will donate 0.5% of the price of your eligible purchase to MSAA! Click here to learn more or to make a purchase.

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2. eBay Giving Works— Do you have some things lying around the house that you’d love to sell on eBay? If so, you can choose to donate a portion of your sales to MSAA. Visit eBay’s Giving Works website to learn more.

3. Counter Punch Wine— Calling all wine lovers! Purchase wine bottles by using MSAA’s promotional code and receive a 10% discount! The best part? MSAA will also receive 10% of your purchase—helping us to continue improving lives today for people living with MS. Please visit www.counterpunchwines.com and enter the promo code: MSAA

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4. CafePress— Get all your MSAA and Swim for MS swag here. Everything from bags and water bottles to t-shirts and bracelets make great gifts. Check out the full inventory.

*We’re sure you’ll love our shirts, but we can’t promise you’ll look this cute wearing them.

5. PuraVida Bracelets— Help us raise awareness of multiple sclerosis by purchasing an MSAA bracelet from PuraVida. $1 of each bracelet purchased will go directly to MSAA. Visit PuraVida’s site to learn more.

6. Host a Pool Party—  Now that summer’s here, invite your friends and family to the pool and have a Swim for MS themed pool party! Provide games, snacks, music, and ask for donations at the door. Your only pool party requirements for this easy event are fun & sun! Email swim@mymsaa.org to start planning your event.

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However you choose to show your support for the MS community, MSAA would like to wish you and yours a safe and enjoyable summer. If you or a loved one struggle with MS symptoms during the summer heat, please visit our website to learn more about MSAA’s Cooling Program or call MSAA’s Helpline at (800) 532-7667 ext. 154.

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