I am a Client Service Consultant here at MSAA. I have my Master's Degree in Social Service from Bryn Mawr College, a school just outside of Philadelphia. Originally from the Baltimore area, I am a huge Baltimore sports fan and am often heard cheering for the Ravens and Orioles. In my spare time, I enjoy cooking, traveling, and playing kickball with my friends in an adult sports league.
2013 has been a pretty substantial year in my life. As I grow older, I start to reflect back each year, just to stay in tuned with myself. I have accomplished a lot this year, in starting my career with MSAA, moving, and feeling more emotionally complete.
It is hard not to be sentimental while reflecting back; some of my favorite times are spent talking about past life events or some of the interesting people who have come into our lives. I strongly believe that there is a lesson in every moment, but sometimes you have to take a step back to see it.
Although our physical surroundings and lives may have changed over the years, our inner souls remain the same. We are still the same person on the inside. For many, it can be a challenge to accept these changes; they wish to be the person they were before. However, I think we are that same person, but maybe we have become so bogged down with all of the “stuff” outside of ourselves, we have lost touch with our inner souls.
There is a quote, by Bryant H. McGill, “Change will never happen when people lack the ability and courage to see themselves for who they are”. Take some time this holiday season to find yourself again. Maybe reach out to an old friend or family member and reminisce about the years.
Recently I attended a training regarding long-term care planning that really got me thinking about what I could be doing now that may help my family and me in the future. For many, this is a difficult topic to think about. No one wants to plan their end-of-life care, or make arrangements for a nursing home when they are relatively young and relatively healthy. But the reality is, we do not have a crystal ball, and we cannot predict the future.
According to the presentation, approximately 70% of Americans eventually require some form of long-term care. With the cost of some facilities ranging from $5000 to $10,000 a month, the idea of self-pay is extremely unrealistic. Currently, Medicare does not provide long-term care insurance that would provide the additional support for care facilities. So unless you have a private long-term care insurance plan, or can meet the income guideline for Medicaid, you are stuck paying out-of-pocket for care. With that being said, it is important to look into long-term care insurance plans early on to hopefully purchase a plan with a decent rate.
Another important tip presented was about having the discussions with your loved ones and family members regarding end-of-life decisions. This can be a very challenging conversation to have; death and dying are often difficult subjects. But less than 20% of Americans have an Advanced Directive or a living will. For the 80% that do not, I am sure a large portion of them have never discussed their wishes with a family member. Without an Advance Directive, doctors, nurses, and EMT’s will continue to provide life supporting help to prolong your life. By creating an Advance Directive and creating an end-of-life plan, you are ensuring that your wishes will be followed.
In order to complete an Advance Directive, you must be 18 years of age and of sound mind. The document must be in writing and signed by two adult witnesses. It is suggested that you provide a copy of the Advance Directive to your doctor or care facility and provide a copy to a trusting family member. It was suggested that Advance Directives and other important information should not be kept in a lock box, rather, a storage cabinet along with other documents that may need to be accessed by family members.
This training was an eye opener for me and as if I wasn’t already a neurotic “what if” planner, provided some valuable information. I wanted to share some of the things I learned in this blog, with hopes to spread the word along to others.
Have you seen the car commercial recently where someone says something along the lines of, “we have to do something about this car”, and the little yellow line pops up and guides them to where they need to be? Wouldn’t that be wonderful, if for every problem in life that we encountered, a little yellow line helped guide us to the right choice?
Although there are no yellow brick roads guiding our way, we do have a chance to prepare ourselves for our future. I have always held true the saying, “hope for the best, plan for the worst.” Although I may be called a cynic for thinking this way, I always feel it is best to have a plan in case things don’t work out the way they were expected.
For individuals faced with a chronic illness such as MS, keeping on track and following the plan are two very important steps. From the very first doctor’s appointment a plan is created; what medications to take, what testing to have completed. It becomes part of a routine. But what happens when that plan falls apart? Maybe you need to switch medications, or you are unable to continue working. You may find yourself asking, “now what’s the plan?”
Having the next step in mind is a way to try and avoid the panic that may set in when life throws you a curve ball. To help keep on track with your MS, it is important to work with your doctor not just about the present MS challenges, but also consider planning for the future. Creating a plan about who to call and what to do if you feel as though you are having a relapse may make the experience feel a little more in your control.
Also, having discussions with family regarding long term plans and making small changes that may assist down the road can lead to less confusion and uncertainty in the future. Perhaps you’ve thought about moving to a more centralized location with more resources, or downsizing to a smaller more accessible home. For some people, these are important considerations for their future plan. What plans have you created or thought of for yourself? Looking back at your life, do you see any areas where you wish you had made a plan?
For this month, we focused our blog around managing MS. Some helpful tips were provided and the one that sticks out to me was about “asking for help”. Understanding your limits and what you are able to accomplish in a day is a great way to conserve your energy and focus on what is important. Often times it is important to involve those around you, but navigating the “how to” is a challenge.
For those who struggle with the symptoms of MS that may not be visible (i.e. fatigue, pain, and cognitive changes), the hidden symptoms of MS, asking for help from a friend or loved one can often be a daunting task. We frequently hear and read stories from individuals who feel guilty asking for help, because they don’t feel that they “look” sick. They fear they will be judged in asking for help.
It may be helpful, before you tell everyone about your MS symptoms to think; does this person play a significant role in my life? And, can I rely on them in the future if I need help? If the answer to both of these questions is yes, then it is time to put on your teacher hat and educate those identified helpers about what types of symptoms you experience and what they may look, or sound like, for you. MSAA’s The Motivator Winter/Spring 2013 edition discusses may of the hidden symptoms of MS: http://www.mymsaa.org/publications/motivator/winter-spring13/. This publication can be shared with friends and loved ones to further provide education and information.
Not every person with MS experiences symptoms in the same way, so providing information as to how MS looks and feels to you is very important. With more understanding and better education, we can hope to reduce the stigma around the hidden symptoms of MS and promote a more positive experience for both yourself and your loved ones.
Please share your experiences, have you had to educate your friends and loved ones about the symptoms of MS? What has worked for you?
“Your present circumstances don’t determine where you can go; they merely determine where you start.”
As the summer comes to an end and we embark on the last few months of the year, it is time to challenge ourselves and start something new. Just as the kids prepare for the new school year, prepare yourself for a new task. Is there a goal you wish to accomplish, a skill you would like to learn, or maybe just a good book you’ve been meaning to read?
Starting something new can be scary, especially if you have tried unsuccessfully in the past. But from failure we can learn, and today is a new day.
First, decide what it is that you want to accomplish.
Second, set measureable goals for yourself, or mini-goals to help move you along.
Third, make it realistic. Many little successes over time reinforce your goals and set you up for success.
Fourth, set a deadline, but make sure to provide yourself with a reasonable amount of time to accomplish the task.
Last and more importantly, reward yourself! Even if you haven’t succeeded, you set out to try something new and have probably learned some things along the way.
Starting now, what goals would you like to accomplish?
This month we focused on offering support and resources to the caregivers providing love and support to many with MS. We shared tips, stories, and resources for the caregivers who have dedicated their lives to helping others. On behalf of the entire MSAA staff, we say Thank You!
“It is one of the most beautiful compensations of life, that no man can sincerely try to help another without helping himself.” –Ralph Waldo Emerson
The role of the caregiver is often described as “the rock” or “the foundation” of the family; the one responsible for the wellbeing of all. But who takes care of you? Just as much as your loved one needs your support, you need support also. It is ok to take a break, and turn to help when you need it. In order to be the best caregiver you can be you need to be well rested both mentally and physically. Being the primary caregiver for an individual with MS can be challenging. The unpredictability of MS itself creates an additional challenge in trying to manage your day to day life.
There are some helpful resources for those in the caregiver role to aid in the management of the daily challenges of caregiving. The Family Caregiver Alliance provides caregiving information and advice as well as a guide to state resources available to caregivers. The Caregiver Action Network offers information and resources to individuals in all types of caregiving situations. The site helps to identify the various needs that caregivers may express through their varying roles.
Another great resource directed specifically towards spousal caregivers is the Wellspouse Association. They coordinate a national network of Support Groups and facilitate a Mentor program. And when the time comes for a break, the National Respite Network provides a National Respite Locator to help caregivers locate respite services in their community. The site also helps to educate caregivers on how to find and choose appropriate respite care.
With so many resources available to assist the individual in the caregiving role, now it is your time to take a break and be the best caregiver that you can be.
As the temperature continues to rise during these summer months there are several ways to help beat the heat and conserve your home energy. Start by trying some of these tips to lower your energy bill and keep your home cool!
Keep doors closed to uncooled parts of your home. If you have central air conditioning, close off the vents to any rooms that you will not be using.
Tip: The lowest level of a home is often the coolest. If you have a basement, plan to spend most of the day in this room, to avoid over cooling the rest of your home.
Using ceiling and other fans, even if you have air conditioning, helps to provide additional cooling and better circulation of the cooled air.
Tip: Place a bowl or tray of ice water in front of a fan to increase the chill factor!
Seal any holes or cracks around doors and windows, this helps to eliminate cold air leaks. Make sure to seal around window air conditioners with insulation.
Close the blinds and shades in windows facing the sun to keep out the sun’s heat and help fans and air conditioners cool more efficiently.
Tip: Check out energy efficient curtains or blackout curtains to help keep the light and heat out of a room!
Clothes dryers and dishwashers produce a lot of heat. Use them in the early morning or late evening, not during the hottest part of the day.
Tip: Wash clothes in cold water and air dry in front of a fan. This tip works the same as the bowl of ice water!
Turn off TVs, computers, and other electronic devices rather than use standby mode. Electronic devices can create additional heat in the home.
Unplug items like cell phone chargers, DVD players, microwave ovens and other appliances. They still use energy even when turned off!
Tip: Plug electronics into power strips and turn off the power switch when the items are not in use.
The Low Income Home Energy Assistance Program (LIHEAP) helps keep families safe and healthy by assisting families with energy costs. Check in with LIHEAP about energy conservation and low income energy assistance programs. Often in the summer months, those with lower incomes, or individuals with disabilities are offered discounts on their energy bills to help keep their homes cool during the summer months. For information on applying for LIHEAP assistance, please contact your LIHEAP State or Territory agency.
June is National Fruits and Vegetable month. While we should be eating fruits and vegetables every month out of the year, June is merely welcoming back the garden-fresh produce that we’ve missed all winter long. The biggest part of eating right for summer is listening to what your body tells you about what it wants to eat. As you approach these summer months, do it with fruits and vegetables in your belly and in your fridge. Stock up on vegetables rich in color. Maybe have a bowl of fruit for a snack instead of chips. Encourage your friends and family to join you in your venture towards a healthier lifestyle!
Cantaloupe, watermelon and tomatoes are great fruits to help you stay hydrated. Great summer vegetables include summer squash, sugar snap peas, corn, bell peppers and onions. Eggplant, zucchini and green beans make a great source of dietary fiber.
-Broccoli is a nutritional powerhouse: It is full of vitamin C, calcium, fiber, and vitamin A.
-Carrots are a good source of fiber, which helps to maintain bowel health, and aid in weight maintenance.
-Watermelon, which is especially terrific this time of year, offers a juicy, sweet taste and high water content, while packing in antioxidants, vitamin C, and potassium.
-Grapes aid in the maintenance of healthy blood pressure. Eating the whole fruit instead of consuming the juice contains the added benefit of fiber.
Tips for your wallet: Fresh produce is more affordable when it is in season. Also, look for weekly specials on fresh, frozen, canned, and dried fruits and veggies. At a restaurant, always ask what vegetables, including salads, are available as substitutes.
What fruits and veggies will you be adding to your diet this June?
The grown up version of a teenage diary, journaling is a great way to connect your thoughts and tune in to how you are feeling on a daily basis. Although difficult at first, eventually you will find yourself writing page among page effortlessly. Journaling allows us to express our deepest fears, saddest sorrows, and greatest accomplishments in an open non-judgmental format.
Writing quickly frees your brain from “shoulds” and other blocks to successful journaling. If it helps, pick a theme for the day, week or month (for example, love, confusion, change or anger). The most important rule of all is that there are no rules!
All you need is a pen and paper, nothing too fancy to start! Online journaling resources such as Penzu and Penmia can be used for those who may feel more comfortable typing rather than writing. Also in this format, assistive devices can be utilized in order to journal more freely and openly without the struggle of pen and paper. Even a voice recorder or video recorder could assist with journaling!
By journaling routinely you will get to know what makes you feel happy and confident. You will also become clear about the situations and the people in your life. Journaling about stressful events helps you come to terms with them, thus reducing the impact of these stressors on your physical health. Journaling about anger, sadness and other painful emotions helps to release these feelings. By doing so, you will feel calmer and better able to stay in the present.
Tune into yourself. Journaling can benefit individuals with MS, by connecting the mind and body. Journaling about a symptom creates awareness around the symptom; when did it start, what you were doing when it started, and did anything make it better or worse. Symptom tracking through journaling is an effective way to help manage your MS.
Through your expressions you’ll discover that your journal is an all-accepting, nonjudgmental friend. And may provide the cheapest therapy you will ever get. Best of luck on your journaling journey!